Learning to Love Different

Home Again

2012-02-16T20:51:00.000-05:00

Today we were released from the hospital. The STAT nurse put in a PICC line yesterday, it's like a more permanent IV so that we could take Nathan home on IV antibiotics that I give him. So today once they were sure the PICC was functioning they released him. It took a while to coordinate the home infusion supplies but once that was all figued out we were good to go.

Once we got home from the hospital the nurse came out to the house to drop off all the IV supplies and pumps. She came with a HUGE bos full of stuff, all just for 2 weeks. It's amazing everything we need for such a short period of time. I have to give him his last meds of the night at 10pm which isn't bad but it's 1 1/2 hours of meds total so it's going to take a while and I'm going to get to bed late but at least we're home.

Nathan was exhausted all evening. He has been really tired lately, I think it's been from not sleeping great in the hospital. So he was ready for bed tonight when we got home from Aunt Katherine's house.

The boys had a great time at Aunt Katherine's house. Trevor was very interesed in her wine collection and Nathan just wanted to just sit on the couch and watch PBS. The adults got to play some games while the kids played, it was a nice night.

Next week we're going to have a busy week with a Dr appt in Boston, one around here and we have to have the home nurse come in to change Nathan's PICC dressing. I better sleep when I can, these next two week are going to be quite sleep deprived!

We Just Can't Stay Away

2012-02-14T07:26:00.000-05:00

Yesterday morning I was on the phone all morning call each of Nathan's specialists, we are due to go see most of them so I needed to call and make some appointments. One of my calls was to the pediatrician to check on urine results. Turns out labcorp faxed the results to the wrong place and it took a lot longer to get them than it should have.

Both boys urine was fine, no UTI's but that left us with the fever problem for Nathan. So while I was talking to the nurse she told me his urine did show some glucose in his urine which isn't a normal finding so they needed to get some bloodwork done. Anyone who knows Nathan knows how difficult that is so we went into the ER to get him checked out there and have the people who know his veins best try to get some blood.

The doctor initially acted like he didn't want to give Nathan some light sedation for the bloodwork but the nurse and I convinced him it was best for all of us, and we were right. They got the IV and blood on the 1st try - that never happens - and then about 45 minutes later Nathan looked at his arm and said "how did that get there?" They did chest x-rays and a renal ultrasound in addition to the bloodwork. His ultrasound was normal for him, his kidney has extra fluid in it but it's been there and it was better than last time so that is good. His chest x-ray is what got us admitted though. It showed a pleural effusion on the right side. That means that he has extra fluid around his lung, it's constriciting his lung making it harder for him to breathe and causing his oxygen level to be a little lower than they would like. They did another x-ray and it's small but it's there so we need to stay until it goes away.

The doctors are assuming it's from an infection since he has had such a high fever for so long. I'm hoping they are right and it's not from anything else. To treat it they are giving him TONS of antibiotics, I think he's on 3 different ones by IV right now. So I also asked them to put him on good bacteria to help with the diarrhea that I know is coming.

For now he's OK. Neither of us slept last night. Here is a timeline of events:

10pm, he finally settled into his room and went to sleep
11pm, vitals
12pm, they came in and turned on ALL the lights in the bed next to us - it was empty at the time
1am, they turned all the lights off
2am, lights on and a roommate came
3am, coughing fit because it's so dry in here he can't cough up the crap in his lungs
4am, bloodwork - the nurse did it at this time because he needed his antibiotic
5am, I called it a wrap and just got up and started working. I did that because the Dr's were rounding on the roommate.

Needless to say I'm exhausted already but Nathan is at least sleeping. I'm nosey and heard the Dr talking to his roommate who I think is going to go home later today so maybe this afternoon we can take a nap.

Thoughts

2012-02-12T13:00:00.000-05:00

Well the bus problem has been resolved. Nathan is now able to take the bus to and from school each day. I had to remind them that sending a safe carseat isn't an unreasonable request, it's just doing their job. The woman at the bus company isn't speaking to me, apparently we're 12 years old, but at least he's safe on his way to school.

Both boys have been sick for a month now. Nathan was in the hospital in January for RSV and then Trevor also got RSV but he avoided the hospital. Then they both started getting fevers but then the fevers would break for a couple days and return. So now we're waiting on urine results. I think since there are no other symptoms it's a UTI in each of them. Nathan has been complaining of belly pain which I think translates into back pain/kidney pain. So if his fever isn't gone by tomorrow and his results still aren't in I'm going to have to bring him to the hospital. I talked with the nurse at his pediatrician office and she agreed, we can't let him go for so long with a fever since he has just one kidney and we need to be careful with it. So for now we just have to wait and see.

Matt was home this weekend, which was nice. The boys really miss him, especially Nathan. Nathan has been having a hard time with Matt being gone so he really loves to be able to spend time with Daddy. It was also nice to be able to not rely so much on my parents and sister for help. With Matt and his parents all being gone my parents and sister are the only ones who can really help me with the kids. I've needed a lot of help lately with them both being sick. What has suprised me is the amount of people who have offered to help with the kids, it's been really nice to see how many people love my boys are willing to help in any way they can. What is even more suprising though is the people who haven't offered to help, the ones I haven't heard from at all since Matt has been gone.

Yesterday I went to Saratoga to help with a spaghetti dinner that was benefitting THON at Penn State. Two of my cousins go there so their parents put together the dinner in support of them and THON. MY cousins both came home for the weekend with a group of their friends, all college students, to help out at the dinner. It was amazing to see. THON raises money for the four diamonds fund - pediatric cancer. When I was in college pediatric cancer wasn't even on my radar and I certainly wasn't staying up for 48 hours to dance to raise money for it. It was amazing to see a group of kids (when did I get so old) who cared so much.

That's all for us for now. We are hoping to hear urine results tomorrow, otherwise I'm afraid it's off to the hospital for us.

Bus Problems

2012-02-03T15:54:00.000-05:00

Nathan takes the bus to preschool, he loves it. He loves when his bus gets here, it makes him feel like a big boy. I love that we don't have to drive 45 minutes each way twice a day just to bring him and pick him up from preschool. I think that has ended.

I got a call the other day from the bus company, Gateway Transportation, that he was getting a new driver in the morning - fine, I couldn't care less. This will be his 4th driver this year alone, they are constantly changing the route and drivers, no big deal. So on Thursday a bus gets here at 8:30, school starts at 8:45 and it's a 45 minute drive from our house.

I walked Nathan out to the bus and saw the "new" car seat he was supposed to sit it, it looked older than me. Usually I ask to see the expiration date but I didn't this time, I probably should have. The straps were all twisted and mangled looking, I let that go also. They sat him in the seat and buckled him in, never tightened the straps. I couldn't let that go. I asked the aide to tighten the straps, she couldn't figure out how. So the driver stepped in and attempted to tighten them, they didn't move. Now please know, I only know about car seats from having been the annoying parent at every local car seat safety check asking a zillion questions while they police and techs are trying to install my car seats. So I told the driver that Nathan couldn't sit in that car seat because he needed the straps to be tighter. The guy lifted the strap up off Nathan and it was probably 2 inches above his shoulder, and acted like that was fine.

So needless to say I drove Nathan to school that day. On the way I tried to call the bus company, the first time I called the woman was ride and defensive, she told me he was a great driver and everyone loved him. Which is wonderful, but that doesn't make him a car seat expert. Then she told me I was being too needy, they knew what they were doing since this was their business. I told her she needed to care a little more about safety and apparently that set her off because she hung up on me. So i called back a couple more times and either they wouldn't answer or they just hung up on me once they heard who I was.

Today I kept Nathan home from school, he was exhausted from being up all night coughing. Good thing since the bus never came. While on my way to the gym I called, they discontinued bus service because I'm too "needy and demanding" I told her I'm not needy, I just want my son to be safe on his way to school. She acted like providing him with a different car seat is going above and beyond what they should have to do, I reminded her it was simply her job. Then I asked her to please understand why I was upset, I had been hung up on to which she replied "I hung up on you three times" like it was a normal thing to do.

I am so frustrated. I called the county and the woman there was equally useless. She told me she inspects their car seats at the beginning of each year and they are always fine, so I should just relax. I think I might take a picture of the next car seat he is provided to show them how awful they are. Ugh

Year End Wrap Up

2011-12-31T22:04:00.000-05:00

As 2011 comes to a close I am sitting here reflecting back on the year.

In January Nathan started going to preschool 5 days a week. He learned to love preschool and now that he takes a bus to and from school he loves it even more.

In February we started having trouble with Nathan and he was admitted to the hospital a few times with severe, chronic diarrhea. We never did find out a cause.

In March we had more of the same, more hospital stays and more diarrhea. At one point Nathan was diagnosed with a lactose intolerance even though he wasn't eating any lactose (thank you very much Albany Med Peds GI, you are simply awful).

In April we went on Vacation to Myrtle Beach, SC with Grandma and Grandpa. It was a great vacation but we had to leave early to take Nathan to the ER. Up until that point it was a pretty good vacation and we can't wait to go again.

In May, nothing noteworthy again. Forgive me, it's late and I'm having a mental block to May.

In June preschool took a break before summer session began. Program preschool (where the therapies are included) doesn't break like regular school, they go year round with breaks like regular school.

In July Daddy impressed us with his fireworks display at the lake. Trevor loved all the pretty colors and didn't mind the noise, Nathan liked the colors but HATED the noise.

In August, this was a big month for us. We went to Cape Cod and it was supposed to be a fun beach vacation. In a surprising turn Trevor got sick and ended up in the ER and Nathan had a great week going to the beach with everyone else while I stayed home and nursed Trevvie back to health. Not to be outdone Nathan's feeding tube came out and we needed to call an ambulance to put it back in. Later in the month we had a party for Nathan at the track so he could see all his friends before surgery. Then at the end of the month we went to Boston to get his trach removed. It was a long surgery for all of us but Nathan came through it great. Trevor got to spend some time with all his grandparents who took turns taking care of him. Also, Trevor started really walking all over the place. Once he got mobile there was no looking back!

In September Nathan was sent home for the very first time in his life without a trach. Nathan had never before been home without one. It was quite a day for all of us, hard to believe we were able to take him home only 2 weeks after surgery but we were (since I'm a nurse I was trusted to wean him off pain meds at home).

In October we went to B'ville to see the Hipolito family and visit the zoo. Trevor loved the zoo but was always a little jealous that all the animals were eating and he wasn't. Nathan also decided there was a nearby hospital he'd never visited and knew Aunt Trisha always wanted to see the inside of it so he got pneumonia while we were out there and got himself admitted to the hospital. He was sent home a couple days later, just in time to require Aunt Trisha and Geege to do the "herkimer shuffle" with Nathan and I since Eeeeaaaa and Trevor had to go home the day before.

November brought holiday festivities. We had thanksgiving to celebrate with the family and Nathan went to his first Turkey Trot. Trevor woke up quite early and was exhausted for the rest of the day. It was also the first Thanksgiving where Trevor was able to actually eat and he loved it. Thanksgiving is his holiday, he rocks at Thanksgiving. He ate himself into a food coma and when we got to grandma and grandpa's house he was ready for bed even though all the other kids were still up playing. Also, the boys were both asked to be ring bearers in their very first wedding! Nathan is already practicing walking slowly and smiling (at the same time, hard to do for a 4 year old).

December was full of family, fun and Santa anticipation. Once it got closer Nathan was a little nervous that Santa was going to come into him room and scare him but that didn't happen. Trevor doesn't understand the joy of Christmas so he had to be woken up at 8am to open gifts. Nathan opened all the gifts for both of them while Trevor walked around eating cheerios.

Other things that happened
-Trevor started talking and waving his hands to signal he wants something, usually food

-My parents believe Trevor signs, I'm still deciding

-Nathan started talking and needs to be reminded to breathe, he just doesn't stop. I asked him if he wanted to have a silent contest and he got sad and said "I just can't stop talking mommy, I love it"

-Nathan tricked everyone into believing he can read by memorizing his books and then repeating them to you as you looked at the book

-Trevor realized he HATES broccoli, and makes a cute face when he does accidentally eat it

-Trevor realized that he can walk his little self into the kitchen, open the pantry and get some food. He has a preference for the honey. That was before I bought a gate to keep him out of the kitchen

-Nathan started taking a bus to school and loves it

-Matt got a new job with Amtrak, we are all very excited

-Nathan turned 4 with a Thomas the train party.

Overall, 2011 was a good year for us. With nothing else, Nathan got his trach removed and that is all Matt and I ever wanted. We had a lot of great times and a few bad times. We were lucky enough to spend lots of time with our friends and family.

Here are my resolutions for 2012:
-I want to live in the moment more, spend less time worrying about what the future holds and more time enjoying the moment.
-I want to teach both boys how to swim, might need some help with that one.
-I want to take the whole family to California and have no one on our plane complain about the annoying kids in reference to mine.

Happy New Year's everyone. I hope you all celebrated with the one's you love most!

Thank God for Family

2011-12-17T18:29:00.000-05:00

Yesterday Nathan wasn't having his best day, he has had pretty bad diarrhea for a few days now. Yesterday it got ahead of us and he was dehydrated. He couldn't keep anything in, not ever water so we brought him to the hospital to get rehydrated.

I realized, yesterday, how lucky we are for our families. They are always willing to drop what they are doing and run to our rescue to take care of Trevor while we are in the hospital with Nathan. I called Matt's mom and she came right over and watched Trevor during the day and then my mom took over and watched him overnight for us. The two of them also have a great relationship so i didn't have to make all the arrangements, I called each mom and then they figured out how it would work between the two of them. They always do that, figure it out and then let me know. They know how very stressful it is for us to be in the hospital so often with Nathan and they do everything they can to make it easier on us. I never worry about who is going to watch Trevor, I know they are always willing to help out. It just makes a stressful situation that much easier.

So not only am I grateful that our parents are so willing to help, I'm glad they are so close and willing to figure things out and not worry me!

Nathan is fine, rehaydrated and home. Now we just have to wait and see how long it lasts.

Ugh...

2011-12-14T15:11:00.000-05:00

So I'm sure msot of you know this but Nathan has been on near constant antibiotics since October, yeah you read that right... OCTOBER. We are all sick of the antibiotics, especially Nathan's intestines since we ran out of probiotics and gave him a different kind for 3 days and he had severe diarrhea that is just now going away (I went to the store and bought the old kind).

There is really no reason for the constant antibiotics other than he has increased mucous in his lungs. The pulmonologist has said that this is beacuse his cough simply isn't strong enough to get the mucous up and out of the bottom of his lungs. He has NEVER had to cough hard enough to get stuff out of the base of his lungs, when he had his trach we would suction it out. So he needs to develop a stronger cough, it's going to take time. In the meantime we are working on getting him a chest percussor that will help to move the mucous around the in the base of his lungs to make it easier to cough up. I am hoping he lets is do it so he can finally come off his antibiotics and stay off them.

Trevor has been doing great. He is a complete monster that is into everything and eats whatever isn't nailed down. He even tasted cat hair the other day, don't worry, he didn't eat it! He has been very happy with the Christmas tree and loves to play with the ornaments, he's still learning that they aren't toys and he can't play with them. Telling him to leave the tree alone is like telling the cats to leave the tree alone.

To add to it all Matt has gotten a new job with Amtrak (yayyyy!) but that means we are going to have to get Cobra insurance for January while he is in insurance limbo, no longer with CP but Amtrak doesn't start until February 1st. To make it all worse Matt is going to be at school in Delaware for about 8 weeks starting in January (boooooo). So things are going to get a little hectic around here for a while but we'll get through it. It's going to be a good change for all of us so that's what I remind myself of everytime I think of the 8 weeks at school.

I hope you are all enjoying this wonderful season. We are having a great time with the boys doing christmas crafts and baking together. Tomorrow one of Nathan's friends is going to come over and we are going to teach him how to sprinkle cookies using an entire jar of sprinkles but getting NO sprinkles on the actual cookies - it's a good time!

All good

2011-12-04T23:16:00.000-05:00

I haven't updated in a few days, everything here has been pretty good. Nathan's teacher sends us home a daily report with how he did at school using a star system. He usually gets 3 stars and that is the best you can do so clearly he loves preschool and does wonderful while he is there. Trevor has learned to love going to the gym daycare and each morning he walks over to the shoes and sits down and tries to put his shoes on so we can go. Sometimes he ever does this before he eats. He has even started walking right into the daycare area while I am still checking into the gym, he's come a long way since he first started going there.

Funny story: I went into Nathan's room a few days ago to wake him up for school. I asked him if he had poop in his diaper (he eats all night and usually poops) he said "No I do not" so I started to take his diaper off him and as soon as I opened it he yelled "SUPRISE" and thought he was hysterical. I didn't think it was as great a suprise as he did but it was cute to see how happy he was with himself.

It's cute to see how great the boys are together. They are still learning to share toys and not grab things from one another but I know we'll be working on that for a while. Usually they are great together and play without tears from either one. Nathan loves his little brother and Trevor just wants to do whatever Nathan is doing.

Nathan's pneumonia is mostly gone, to us it still sounds like he has some junk in his lungs but he is acting pretty good. I think we are going to go back to the Dr this week to make sure all is well with his lungs before Christmas comes. We're trying our best to turn 'hospital season' back into just plain old winter.

Thankful

2011-11-24T18:41:00.000-05:00

Happy Thanksgiving everyone! I hope you all are having as wonderful a day as we are. I know sometimes this blog can be a real downer, so I decided that today I would post a list of things I am thankful for.

I am thankful for my health. Not everyone is lucky enough to be healthy and we all need to appreciate it more.

I am thankful for my job. It provides us with a second income and gives us enough financial support to be able to do most of the things we want to do with the boys.

I am thankful for our health insurance. I know that sounds a little funny but I really am. Having a child with multiple medical issues, we'd be DEEEP DEEP in debt if it weren't for our great insurance. So I'm thankful for it.

I am thankful for our home. Not everyone is able to afford their own home and I need to appreciate it more that we are able to own our home.

I am thankful for my new van, Vannie as Nathan calls it. I just love my van (never thought I'd love a minivan so much) and am super happy with it.

I am thankful for my family, the family who are an active part of our lives. Nathan's health has been extremley stressful on all the relationships within our family and I've learned a lot since he was born. The most important lesson I learned was that family is more important than anything else and you only get one. Our family has been so, so supportive with everything we have been through. I'm not sure we would have made it through Nathan's first year without our family.

I am thankful for my husband. Although I may complain about him more than I should he really is a wonderful husband. He goes out of his way to do nice things for both me and our boys. He is the best Daddy I could have ever wanted for our boys and we are all lucky to have him, even if he can't seem to remember to switch the laundry.

I am thankful for my children. I am thankful that I get the opportunity to watch them BOTH grow up and live their lives. There were times when I didn't think Nathan would ever see his first birthday but he did. I have too many friends that lost the opportunity to see their children grow up. They have taught me to be thankful for my children. Those friends would give anything and endure health problemsjust to be able to hug their child again, give them one more kiss or hug. It's those friends who taught me to be grateful for what I have, not yearn for what I don't.

There are zillions of other things I'm thankful for today, those are just the major ones. So today I encourage you all to be thankful for what you have, and hugs your kids just a little tighter.

Things I've Learned...

2011-11-23T11:31:00.000-05:00

I've learned a lot of new things over the last 4 years, most of it related to Nathan but some of it about myself. Here is a list of things I've learned:

1. Doctors aren't always right
2. Doctors rarely know what is best for MY child
3. Nurses always mean well but some of them are burnt out and should leave the profession.
4. If it's been a bad day I think it's my personal responsibility to let above mentioned nurses know exactly what I think of them. This sometimes involves tears on their part.
5. Some nurses love Nathan just as much as I do.
6. The best nurses see Trevor come to visit and bring him snacks and juice. I love the ones who go out of their way to make my chunk feel special.
7. Nathan is the strongest person I know.
8. I can't take jokes about my parenting skills.
9. I have no problem telling a doctor/nurse/pca how to do their job if how they are doing it affects Nathan.
10. No IV is so important that Nathan needs to be treated like a pin cushion to get it. If you can't get it in 2 trys you better find me someone else.

That is just a short list to get you through until tomorrow when I post things I'm thankful for.

Angry Rant

2011-11-15T22:09:00.000-05:00

Here are some differences in my two kids

1. Nathan would go the rest of his life without food; Trevor couldn't imagine going 10 minutes without

2. Nathan loves to run fast; Trevor loves to play peek-a-boo

3. Nathan goes to school; Trevor plays and eats all day

4. Nathan knows the path we take to get to the hospital, the doctor and every medical building in the capital region; Trevor doesn't

5. Nathan knows pain and true fear; Trevor doesn't

I know that Nathan has been through a lot, you never need to remind me of that, I will never forget all the hours I've spent at Nathan's bedside. I know Nathan's health problems can seem intimidating to most adults, but he's just a little boy who wants to be loved by his family and liked by his friends. He wants nothing more than someone to play trains with him, read books with, and play silly games with. He is NO different than any other child so please don't treat him like he is.

I hate when I see one person treating my two children different. I hate that Nathan is treated badly because of health problems that he has no control over. If you want to treat someone badly treat his former surgeon badly, he caused most of his current problems and I have no problem with that.

With all that being said I have made a decision, I will no longer sit idly by and watch. From now on I will bring to your attention how poorly you are treating Nathan. I will give you one and only one chance to correct your behavior and then we will move on, with the offender no longer a part of our life. I simply can't allow Nathan to be treated badly anymore. This is true even if he doesn't seem to notice how he is being treated. Also, most people do not treat Nathan any differently than Trevor. There are just a few people who can't seem to treat him the way they would want themselves or their children to be treated.

Thank you for listening to my rant. Back to regularly scheduled programming.

Home Again

2011-11-04T13:47:00.000-04:00

The day after my last post Nathan was able to come home. Matt came out to Boston to visit us and was able to drive us home that evening. Since we didn't have clothes for Nathan we took him home wearing a hospital gown wrapped in a blanket and Daddy's coat. He has been doing good since he's been home. We go back to the hospital twice next week, Tuesday for a swallow study and then Thursday for an airway evaluation. Thursday he will stay overnight and then come home Friday.

The boys have both been doing great. Halloween was just a couple days ago and they were both very cute. Nathan was a firefighter and Trevor was a cow. Nathan had preschool and they had a parade and a party that we were able to go to along with all his grandparents. Nathan loved having all of us there and showing everyone his things at school. Trevor loved eating all the party food. Then later in the day we took the boy's to Grandma and Grandpa's house to meet us with cousins and go trick-or-treating together. Nathan had a good time with the other kids. One house gave out trucks and that was great for a kid who doesn't eat by mouth.

Today was Nathan's first school picture day at school. We got him a haircut yesterday and a new shirt to wear. Matt got up with him today and did his hair for him, hopefully he smiles rather than cries. I can't wait to see the pictures.

Trevor has been going to the daycare at the gym each day with me. He is only there about 30 minutes while I get some exercise but he cries the whole time. He started out sobbing with real tears but now he's down to whining and wimpering with no tears. I think maybe in the next couple weeks he will learn to love going there and playing with all the toys.

Moving Floors

2011-10-27T15:45:00.000-04:00

Well last night was a very long night for me. Nathan's next door neighbor (they are seperated by only a curtain) just had surgery and was up all night screaming in pain. I felt badly for his mom who kept trying to quiet him down but he was just so upset all night. Nathan slept right through him but I was up all night. Then the kid two curtains down stopped breathing (I think) and they called a staff assist, at 2am - it sounded like a heard of elephants running to his room. He is fine now, but I was just up all night. Nathan did great and slept through it all, my perfect little NICU baby.

I talked with ORL this morning and they have started to wean him off his oxygen and he went from 70% to 35% so he's almost back on room air - 21%. He is doing much better today, it seems to have really helped him to have his lungs suctioned out yesterday and have his vocal cords dilated. ORL said he should be able to go home in a few days. Then the ICU doctors said they might send him to a regular floor later today. So overall he seems to be over the hump and doing much, much better.

This morning I was rubbing Nathan's head and he told me to leave him alone. Then he told me to go lay down in my bed, so I did. Twenty minutes later he told me to come sit next to him until his EeeeAaaaa gets here (my sister Lisa). So now I'm just sitting next to him reassuring him every 20 minutes that she is on her way and will be here soon.

Update

2011-10-26T17:57:00.000-04:00

Nathan is out of the OR. The doctor said that he does have pneumonia, there was a ton of puss in his lungs. So the doctor suctioned a lot of it out and sent a culture so they can be sure they are using the correct antibiotic. Also, his vocal cords had shut most of the way. The doctor said that can sometimes happen after the particular surgery he had done so he dilated them back open. The whole OR trip was over within an hour or so.

Right now Nathan is resting not so comfortably, he has only a curtain seperating him from the room next door and a little boy was just admitted who is a screamer. Every time Nathan starts to fall asleep the other little boy wakes him up. Nathan just told me to tell him to be quiet. He just wants to sleep, he keeps telling me he is tired. For now he is doing OK. Still on a lot of oxygen which isn't unusual since he does have pneumonia. We just have to wait a few days for the antibiotics to work and then he should be good as new.

Today

2011-10-26T09:52:00.001-04:00

Nathan for a to the OR today at 12:30. We won't know anything until then. For now he is waiting for Grandma to come visit. He is doing ok, on a lot of oxygen to keep his sats up. I will update once I know anything.

Boston

2011-10-25T18:30:00.001-04:00

Well, we are safely in Boston. It took us 2 ambulances and a jet but we got here. Nathan is all settled in. He is scheduled to go to the OR tomorrow so his Dr can look at his airway. We won't know anything until then. Will update tomorrow.

Home and Back Again

2011-10-25T10:35:00.000-04:00

Well, he's back in the hospital. Nathan had been doing really great since he was discharged from the hospital in Syracuse. He had stopped coughing as much and had completley stopped throwing up at night. Then things started to go downhill again.

Yesterday Nathan went to school and didn't do so great. He was tired and wanted to sleep during recess, he was still tired after he got home from school. My parents were babysitting since Matt was already at work and I had to work from 3-11. I left for work and told them that if Nathan got worse to just call 911 and then call me. I had been at work for 10 minutes when my mom called and said that Nathan was worse and they called 911.

Nathan went to the ER and was admitted to the PICU. We were only in the ER for 3 1/2 hours, our quickest ER visit ever! The plan is to transfer him to Boston today, now that he is more stable. His airway is swollen and seems to be shutting, and his lungs don't look great on x-ray. He was too unstable for transport yesterday but today he seems to be doing OK. Hopefully sometime later today the helicopter will arrive and take Nathan to Boston. For now we have no answers but I am hoping we will have some later.

What's a vacation

2011-10-11T20:00:00.000-04:00

This weekend the boys and I went to Baldwinsville to visit Aunt Trish and her family. It was going to be a great weekend filled with the pumpkin patch and the zoo, a lovely fall weekend. Nathan was thrilled to be going so he could see Nick and Alex (who were both great to give up their weekend to spend time with my boys) and play with them.

Friday Nathan wasn't as energetic as he usually is so I thought he was just tired from the school week. Saturday he was still tired, I thought he had been up that night coughing and was still just tired. When we got to B'ville he wanted to lay on the couch and sleep. Trevor wanted to eat! So Nathan was planted in front of the tv on the couch, he was in heaven. Trevor had a great time sneaking away up the stairs to help Mommy set up their beds. Sunday we were going to go to the zoo and to get pumpkins. Sunday it was clear Nathan wasn't great.

While we were at the zoo Nathan wasn't interested in any of the animals. He wanted to zoom right through the zoo, he kept telling us to go. Trevor was having fun but did decide 1/2 way through that he was going to walk. The boys both had a good time watching the penguins (one pooped and it's all Nathan can talk about) but that's about it. Then all of us were hungry so we went to the cafeteria to eat and Nathan fell asleep. We decided to skip pumpkins because Nathan was tired and wanted to nap. We got back to the house and both boys went down for naps. When Nathan got up he was sick and burning up. I took him temp, it was 104.1. Aunt Trish (my hospital buddy) went to get children's tylenol, Nathan watched more TV. I gave him the tylenol and albuterol. The albuterol didn't help so we went to the hospital. We left Trevor in the care of Aunt Lisa who was feeding him dinner as we left.

The ER was great, the realized that Nathan was in trouble and got him to a room right away. The doctor came to evaluate Nathan before he was even in a room, we were standing in the hallway. That's where things sort of fell apart. They couldn't read his x-ray, I had to do it. The doctors never agreed on a diagnosis, some say croup, some say an infected graft some say pneumonia. I think the pneumonia is the most accurate but there isn't really a way to tell.

Nathan is doing much better now. The downside was that Nathan was in the hospital for Monday, when we were supposed to go home. Lisa ended up taking Trevor home with her and I stayed in the hospital with Nathan. Really I didn't have to be there since Nathan wanted nothing to do with me, he just wanted Aunt Trish. Nathan came home today and we are back at our house now. Aunt Trish drove Nathan and I to Herkimer where Geege met us and drove us home.

Overall, we need to redo the zoo since no one really had a great time. Uncle Mark promised us that next time we visit we will go on a horse-drawn sleigh ride, we can't wait to visit again.

The bus and other things

2011-10-03T21:11:00.000-04:00

Things in the Webster house have been relatively easy lately. I'll start with Trevor.

Trevor has been doing great. Ever since he turned 1 in June we've been going to the pediatrician each month for a weight check, he wasn't growing the way he was supposed to. He fell off the growth charts and the doctor was worried. Well, in September he got his little self back on the charts and we no longer have to go each month. He was in the 10th percentile (almost) for weight and back to the 50th for height. He is an eating machine and will eat all day, everday. He loves food, so how he ever stopped gaining weight is beyond me. He walks all over and if anyone ever leaves the gate open he loves to go upstairs and giggles when he gets there. Trevor wants to play with whatever toy Nathan is currently playing with and has started taking the toy once Nathan turns his back, sneaky little guy. He likes to clap and dance to music, baby has some moves! Trevor has a cold right now, but other than that he's been great.

Nathan has been doing great. He loves to take the bus to school even though it's a van on the way to school. He does get to take an actual bus on the way home and he LOVES that. He has a nice bus driver and he turns music on for Nathan and he dances around in his seat. Nathan seems to be up a little more at night than I would like, he's coughing a lot. He does seem to be getting better with that so I think we're getting that under control. He has started telling us "I'd like to take a nap please" when he gets home from school. He does love to sleep. Tonight we were washing his sheets and Nathan said to us, I'd like to go to bed now and we had to say no because his sheets weren't clean yet! Soon after that though he did get to go to sleep, at 7:45!

I have been working a lot lately and so has Matt. We haven't seen much of one another lately because of differing work schedules but in a couple weeks we are going away for a night just the two of us. Matt has a week of vacation and I'm also taking the week off. I'm going away with the March of Dimes for a few days after Matt and I get back so we won't have much family time but I'm really looking forward to going away with my friends!

This weekend my sister and I are taking the boys to my Aunt's house in B'ville to go to the zoo. Nathan has no idea we are going to the zoo just in case of bad weather, but he does know we're going to our Aunt's house. We are looking forward to our first post-trach trip (that means a lot less packing)!

I'll post zoo pictures once I get back.

So Good

2011-09-16T21:54:00.000-04:00

The last time I posted I said we were being discharged. Well, we got to come home later that day. Nathan was still being weaned off his narcotics so the pain team tried to keep us until that was over but I refused, there is no reason I can watch for withdrawal symptoms in other people and not in my own child so we were sent home. The doctors told me I couldn't go back to work until he was off all his medications but that wasn't a big deal, I got a couple more weeks off work.

Nathan has been doing wonderful since he got home, it's amazing how good he's doing. Since he came home he has been having a ton of fun playing with Trevor and getting his strength back. He is finally at a place where he has tons of energy throughout the day and is getting restful sleep at night. He's still having some trouble with coughing, he throws up each time he coughs because he has no idea how to cough without throwing up. He is still throwing up a little at night but that is slowly going away also.

Today Nathan and I went to preschool to visit and see all his friends. He will start going back to school on Monday but will be taking the bus so I wanted to go with him so he was more comfortable on Monday without me. I also wanted to talk to his teachers and tell them about the changes since his trach was removed. The biggest change is that he can no longer eat, at least until he has a swallow study done to make sure he's safe to eat. When Nathan goes back on Monday he will be taking the bus which is much nicer for us since it's a 45 minute drive each way, that 1 1/2 hour in the car twice a day we no longer have to do! We are not going to miss the drive and Nathan is thrilled to be taking a bus, I just hope it's a real bus and not a van!

Trevor has been walking all over the place all the time. That means he's into everything. The other day Nathan was going to the bathroom and Trevor decided to help, he threw some toys into the potty. I discovered I don't really like picking things out of the potty. Trevor loves to chase the cats around, he thinks they are playing while Snowball is running in fear (no wonder she hates people). Toggle does better and tolerates his "petting" since Trevor will usually lose interest quickly. Trevor loves to play with whatever toy Nathan was last playing with and that drives Nathan crazy. I am trying to teach Nathan to share toys with Trevor but he doesn't like it.

We are also dealing with a mouse infestation. I think a mommy mouse came in and has babies and we are slowly finding all of them. We caught one in the trap, Toggle caught one and Snowball caught three. The problem with the cats catching the mice is that they like them alive, and then they drop them so they can keep playing with them. It's a fun game for them but terrifying for me. Snowball yesterday had one in her mouth and then dropped it, the mouse ran towards me and I screamed and stood on the arm of the chair. Snowball caught the mouse again and then the cycle repeated a few times before Matt managed to get Snowball and the mouse onto the front porch so he could catch the mouse and get it out of the house.

We are hoping that 5 is the limit and we won't catch any more but I'm still living in fear. Earlier tonight I had Nathan sitting on the dining room table while I stood on a chair and Trevor was in a chair eating dinner, I heard a squeak. In retrospect I think the squeak was a chirp from a bird but it all sounds the same to me ;)

That's all that's going on with us. Tomorrow it's back to our regularly scheduled programming; I go back to work and the boys are going to my parents for a sleepover.

D-Day

2011-09-06T08:37:00.000-04:00

Well, today is it. The day I've been waiting for since we first stepped foot into the inpatient waiting area on the 25th before surgery. That's right... we're coming home today. Nathan is doing amazingly well and ORL has released him from their service. He is safe to go home with no trach, for the first time in his WHOLE life he will be home with no trach.

That's right, Nathan has NEVER been home without his trach before. Matt and I have no idea what it's like to have kids and no one have a trach. Nathan was trached when he was 4 months old and had never been home before. We took him home a short 2 weeks after that surgery for the first time. We only know what it's like to live with constant illness, medical stuff and doctor appointments. We have no idea what it will be like to live with no trach, a big change for us all.

While Nathan is still weaning off his narcotics he isn't allowed to go back to school and I can't go back to work, Nathan is under my care in case he has any withdrawl symptoms. They typically don't send kids home on ativan and morphine weans, but they said because I'm a nurse we can take him home. We have to follow-up with our pediatrician in a few days so he can see how he's doing. So today Nathan gets to come home and hopefully in a week or so he will get to go back to school. The most exciting part of going back to school is that he won't have a trach, he won't need a nurse with him for transportation which means he will be able to take a bus to school. Matt and I will no longer have to drive 45 minutes each way twice a day for school. Nathan's just excited to go on a bus.

Now I'm impatient, I want to leave NOW. Not that it would do any good, my ride is still in NY and won't be here until around noon (hopefully). So I am hoping that Nathan gets discharged right around noon and we won't have to hang around the hospital long. What a better thing to do on this rainy day than take my sweet little boy without a trach for the first time in his life?

So Long SICU

2011-09-04T17:09:00.000-04:00

Nathan has been seeing a physical therapist for a couple days, usually he just shows them how good he is at throwing a fit. Today he was in the hall walking around and playing catch - it was at that point that the doctor told us we were too loud for the ICU and were being moved a regular floor soon. A little while later Nathan was moved out of the SICU and up to a regular floor.

Now my pestering the nurses about discharge has begun. I've requested Wednesday because it's a convenient day for me to go home, I have to go home that day anyway. The main thing keeping Nathan in the hospital is his narcotic pain meds he needs to be weaned off, and it could take a while to safely get him off the meds. So the pain team was in earlier and said that if it comes to it we could request a transfer to Albany Med so that he is closer to home while he is still weaning off his pain meds.

We still need to have a swallow study done to see how Nathan does with eating and drinking, but other than that there isn't much he still needs to do here. He is breathing great on his own, he doesn't need very frequent suctioning - I don't think he's been suctioned all day. He is getting some chest PT with each nebulizer treatment but suctioning doesn't usually follow it. He is amazingly good at clearing his secretions on his own.

I am, as are all the doctors, amazed at how good Nathan is doing. He is making huge strides in being able to live outside the hospital without his trach. I can't wait to get him home, and be able to sleep in my own bed!

So for now we are waiting, and enjoying our new private room with a view of the helicopter pad. We are hoping that tomorrow he can come off the monitors so he is free to walk around and sit at the window to watch for any helpcopters.

Now I'm off to walk somewhere to dinner with my mom. She's insitent that we walk, I think I've been indulging in one too many cookies while I've been here. I guess when we are finally back home it's back to weight watchers, Lisa you better be ready for WW.

Breathing...

2011-09-02T19:40:00.000-04:00

Nathan did pretty good today, all things considered. He had a pretty good night but I did have to sleep right next to him in a chair - I assume he's going to have my sleeping here until we go home. Whenever Nathan wakes up he panic's if he can't see me, so the chair it is!

Nathan was able to move around a little today, he sat in the chair (my bed) for a little while so I could change his sheets. He was also able to go for a wagon ride, one lap around the ICU and he was done. Usually he is so happy to see people but this time whenever we walked by people he closed his eyes and pretended to be sleeping so he didn't have to talk, he wasn't feeling social I guess. Then a physical therapist came by and tried to have him stand up, while he did stand up for a second he just wasn't that into in and quickly had a meltdown and went back to bed. Considering how long he was sedated it isn't that suprising that he is so weak, his strength will come back eventually. Also, he's going through withdrawl and it isn't fun. They are weaning him off his morphine and sedatives so he can move to a regular floor, but the withdrawl he's going through is making him shaky, sleepy and irritable. They are trying to control it as best they can but some side effects are bound to happen. Hopefully it doesn't last long.

He also started feeds today, a big step in the right direction. He is now eating 10ml/hour which isn't a lot but it's something. They are going to slowly increase him to get him to full feeds and then increase his rate more to get him back to just eating overnight.

In order for Nathan to be ready for discharge he has to be breathing safely on his own, eating normally for him, and be off his meds. It doens't sound like a lot but it's a lot for him and we are going to be here at least another week. We expect to be in the ICU for a few more days while they wean him off narcotics and then on a regular floor for a few days. We are both ready to go home; when he went back to his room today after the wagon ride he cried - he thought we were going home. Hopefully sooner rather than later.

It's Done

2011-09-01T23:10:00.000-04:00

Nathan is back from the OR and did great. I expected him to be in there for a while but about 35 minutes after he was taken in the ORL dr came out with papers in his hand. I assumed something had gone wrong and we needed to sign more consents. The papers he had were pictures from Nathan's airway, they were done. After over 3 years with the trach Nathan was, for the first time, breathing on his own.

Dr.N said that Nathan was going to have some "transitional" breathing where he wasn't breathing great and was going to sound bad but it was normal and would eventually go away. Neither of us was ready for what we saw - our little boy moving around and surviving without his trach. It was amazing, but our amazement didn't last long, he was struggling.

He is trying to cope with the effects of withdrawl from the sedatives and his new breathing. It's a lot for a little 3 year old to handle and he didn't like it. He was uncomfortable so they ordered a different medicine that doesn't slow down his breathing but makes him more comfortable. Until they got it we had to try to calm him down. At one point each Matt and I had to walk away, we were overwhelmed.

His breathing sounded awful and he was thrashing around in his attempt to get some relief. A 3 year old in withdrawl isn't fun. He needs to be suctioned through his nose until he figures out how to cough effectively, and he hates it. It takes 3 of us to hold him down, I hate it. But he is slowly getting better. It's going to be a long night, the nurse brought me a chair so I can sit right next to him all night but still get some sleep. For a little while today he even sat on my lap and watched a movie.

His voice isn't great but it's there. He said "mom" and that is good enough for me right now. The rest will come, but for now we are thrilled with where he is.

Waiting

2011-09-01T15:51:00.001-04:00

We are still waiting for Nathan to be taken to the OR, I guess the Dr is a little behind schedule.

Time for Today

2011-09-01T11:18:00.000-04:00

Nathan will go back to the OR at 2:30 this afternoon. The doctor is expecting things to take no longer than 2 hours. No guarantees that Nathan will actually go at 2:30, the doctor has a few cases before Nathan and if he runs behind on one that will push everything back a little. I'll update again once Nathan is out of the OR.

Since he is coming back to the ICU after he is extubated he will come straight to his room from the OR, he won't go to recovery at all. Now we just have to wait.

Post-Op Day 6

2011-08-31T12:36:00.000-04:00

Last night was a tough one for Nathan. His nurse struggled to stay ahead of his pain and movement all night. The problem was that he needed an increase in all his doses of medications, he had gotten used to the old doses, and by the time we realized that and got the order for the new doses the pain was ahead of us and we had to really work to catch up with it.

His nurse ended up putting him in restraints because he was moving so much and she didn't want him to go for hte breathing tube and self-extubate, that would be very bad. Every time he did move he seemed to be wiping his eyes though which makes me think the morphine is making him itchy and he wants to scratch (morphine also makes me itchy).

Again in the early morining right after an x-ray he was moving around too much again. So again his doses were increased. That means that when they were increased at the beginning of the night the doses weren't increased enough. So for right now he's doing OK. ORL was just in here and talked again about decreasing his sedation, I told them no. For Nathan he seems to be either asleep or moving way to much - no middle ground. The doctor just keeps saying that wiggly is good, but not too wiggly. I don't think he understands what wiggly in Nathan looks like these days.

Later today we should get a time for tomorrow. The current ORL doctor said that he thinks it will be earlier in the day since it's a smaller procedure, Dr.N tends to save his bigger things for later in the day So hopefully we won't have to wait around all day tomorrow.

Post-Op Day 5

2011-08-30T07:22:00.000-04:00

Nathan had an OK night last night, and his nurse was the reason it wasn't good.

For a while last night his BP was a little elevated, nothing bad but just above where it usually is. The problem is that Nathan loves to sleep. He loves to lay in his bed and be cozy with his blanket. He likes quiet when he sleeps, not silence but no talking and disruptions. He likes the alone time.

The nurse last night was obnoxious and loud all night long. Every 2 hours the nurse (all the nurses) come in to do care, they reposition him, change his diaper and suction his breathing tube out. Each time his nurse last night did that she turned on all the overhead lights and talked to the respiratory therapist about her personal life. I swear she was saving all her talking for while she was in our room. For example, I know she is from Chicago and left her boyfriend there to become a traveling nurse and it was hard to tell him but he understood that it's what she wanted to do. He does get upset each time she takes a new assignment but they make it work and visit each other at least every 2 months. Now, I didn't ask her a single question, I learned all that from just trying to sleep.

So I asked Nathan this morning if he was tired, yes he is tired. Did he get sleep last night, no he did not get sleep. Did he want Mommy to stop talking to him so he could get sleep, yes he did. So I know his BP was elevated because he was annoyed that he wasn't getting sleep and wanted to. Heck, you could have checked my BP last night and it would have been elevated.

Needless to say I talked to the nurse, she cried to her friends, and I talked to the charge nurse and we will have a different nurse tonight.

I talked to ORL and they are going to decrease his sedation in preparation for Thursday's extubation. They are also going to start steroids to help with any swelling he may have and start another antibiotic just because he's going back to the OR.

He is on the schedule for Thursday but we won't know what time until Wednesday afternoon. As soon as I do know a time I'll update you all. In the meantime, I'm getting a lot of my Christmas shopping done!

Post-op Day 4

2011-08-29T14:17:00.000-04:00

Nathan is still holding strong. He's stable and for now that is still all we want. His oxygen has been good, it hasn't dropped in a while and that is great. It looks like later today he is going to go off the floor to get his g-tube turned into a j-tube. That means that when he is fed the food will bypass his stomach and go directly into his jejunum, the second part of his small intestine. The doctors want to do that to make it safer for him to "eat" rather than being in IV nutrition for the next few days.

I had to make it clear to the dr that even if they are able to get a j-tube in he IS NOT going home with that and he will be going home with a g-tube. It took us a very long time to get him transitioned from a j-tube to a g-tube and we aren't interested in going back. It's OK as a temporary thing but it's not going to be long-term. The team just thinks with the g-tube he will be more likely to aspirate since he is paralyzed, no muscles in his body are working and that includes the ones involved with keeping food where it belong and preventing reflux. Hopefully they are right and he will be safe with the j-tube. I'm not sure when he is going to get that done, or if it will even happen today. A lot needs to be coordinated to get a kid on a ventialtor off the ICU floor.

Post-op Day 3

2011-08-28T10:46:00.000-04:00

Sorry I didn't get a chance to update yesterday, Nathan kept me busy and we got some visitors. Aunt Kathleen, Trevor and Mimi all came to see Nathan and he was as excited as one can be in a medically paralyzed state. He did try to open his eyes when he heard he was getting visitors and while my mom was reading to him his heart rate slowed down showing us that he was either sound asleep, or very relaxed with Mimi.

It was nice for me to see Trevor, I haven't seem him since Wednesday. I like to think he missed me but when I picked him up I separated him from his food and he wasn't happy about that. Next time we're reunited I will make sure to have an emergency banana with me.

Nathan is doing pretty good. He had one incident yesterday where his oxygen level went down to 12%, it's supposed to be 100% - alarms start at 90%. The nurse was changing his diaper and he started peeing all over the place so she quickly put a diaper on him, we think that started him and caused him to move wrong and block his breathing tube. All the alarms went off, she called for help and the cavalry arrived. Everyone came running, with the code cart, and he came back up as quickly as he went down. Still scary for a mommy to see that, and to see them bag him instead of using the vent.

Today he is doing good. They are questioning the position of the breathing tube - he keeps having similar incidents to yesterday. Since his nurse knows his signs she catches him before he goes way down and he is able to recover quickly. The ORL doctor is going to come back in a little while and put a scope down the breathing tube to check to position of the breathing tube, they think it might be just a little bit too low and that is what is causing all this trouble. So we just have to wait and see, in the meantime his nurse is never far from our room.

Address

2011-08-26T18:13:00.002-04:00

I just wanted to give you all a quick update on Nathan. He is still doing great. Earlier today his nurse came in to do care and she goes "get over here, he's responding to me" so I went over to his bed and started talking to him. When I asked him if he was doing good he nooded his head yes - I love that he responded, his team does not love that he was able to move so his paralytic was increased. The nurse just knew that I would like those few seconds with him before he went back to sleep.

Here is his mailing address, I'm going to put it on the blog later in case anyone wants to mail him anything.

300 Longwod Ave

7 South MSICU

C/O Nathan Webster

Boston, MA 02115

Please don't feel like you have to send anything, but I know some people wanted to send cards and things. Flowers aren't allowed in the ICU so please don't send those and latex balloons also aren't allowed, mylar ones are. Thanks!

Post-Op Day 1

2011-08-26T09:55:00.000-04:00

Nathan did well overnight. Originally his ORL doctor had said that he might be allowed to wake up during this first week as long as he could hold still, I'm not sure the doctor knew who he was talking about. When they first got Nathan out of the OR he was simply on a sedative and morphine for pain control, he wasn't paralyzed. They were going to allow him to wake up a little and see how he did, but they also had restraints on his wrists to keep him from pulling his tube.

Overnight Nathan did start to wake up and wasn't thrilled with his situation so he started thrashing around. It wasn't as bad as it sounds but because any little movement can disrupt his surgical site he was medically paralyzed. The restraints were removed from his wrists since he no longer needs them, he is completley unable to move any part of his body. That includes breathing so he is completley dependent on the ventilator. He was going to be on the vent the whole first week anyway so that's no big deal.

Really this isn't something I'm suprised by, Nathan does have a history of self-extubating when he gets mad and this is one time when he will do more damage by doing that. So it's going to be a boring first week for us, Nathan won't even open his eyes and will be "sleeping" this whole first week. Anyone have any good netflix recomendations?

Overall he's doing as good as can be expected for being a little more than 12 hours post-op. He looks great, there isn't really that much swelling. His vitals are all stable and that's all we want for right now.

If you need me please text, we aren't supposed to have our phones on (but I do). I will periodically check my phone to see if anyone has texted me recently. I can call from outside the unit so if you need to talk to me text me and I will go outside the unit to call you.

Last Update

2011-08-25T18:57:00.000-04:00

He's out and stable. The surgeon just came out and said everything went well. Nathan did great during surgery. He is going to go to the SICU soon.

I don't know much, just that he is OK and his trach is gone. I should know more tomorrow.

Thanks for all the prayers all day, they worked!

Update 4

2011-08-25T18:40:00.000-04:00

We just got another update. It's still going to be a little while. The doctor is hoping to be done around 8. The problem with that is the surgery waiting area closes at 6:30 - we have gotten our last update from the liason. So at 7 we are going to go up to the SICU (surgical ICU) and wait for Nathan to arrive. We will talk with the doctor once Nathan is moved up there. Hopefully it isn't long after 8. I'll update again when I can.

Thanks for thinking of us. Your texts, facebook messages and all your support have meant a lot to us. Matt and I both really appreciate it.

Update 3

2011-08-25T16:40:00.002-04:00

Nathan is still in the OR. We just got an update and the liason said when she spoke with the doctor he told her that Nathan is stable but it's still going to be a while. When the liason asked him for an estimate on how much longer he told her he couldn't give one, it was going to be a while longer.

More waiting... this is getting boring. And we keep seeing families come and go and we just wait... I just want to see my boy and see that he is OK.

Update 2

2011-08-25T13:19:00.000-04:00

Nathan was finally taken into the OR around 11:30, only an hour late isn't really all that bad. I was able to go right into the OR with him and hold him while he was put under anesthesia. He was given gas that made him go right to sleep.

After that Matt and I went and checked in with the liason and then went to lunch. We got back from the cafeteria and the liason came and found us, the general surgeon was coming to talk to us. When he came out he said they had "hit a little speedbump" and were unable to place an IV. Neither Matt or I were suprised by that, he's a really hard stick. So they just needed us to sign a consent for a central line. That was around 12:30, so in the next hour we should start getting updates each hour.

Now we just wait.

Update 1

2011-08-25T08:45:00.000-04:00

I meant to update yesterday but wasn't able to figure out how to update from my phone and we didn't have internet at the hotel. Nathan is doing great, he keeps saying he wants to go home though. He hasn't seemed nervous at all, but we aren't doing anything yet. We are at the hospital and waiting to go to the pre-op clinic. We have to be there by 9 for a 10:30 surgery time. Hopefully that doesn't get pushed back but we are now operating on doctor time and that's never the same as regular people time.

I'll update again once he actually goes into the OR. I am going to go into the OR with him, it makes it less scary for him if a parent goes. So I will go in and be with him until he goes to sleep.

Say a prayer for us, we sure can use them today.

All About Surgery

2011-08-19T22:59:00.000-04:00

I've had a few questions lately about what exactly Nathan's surgery will entail and that made me realize that most people have no idea how big of a surgery this is. So I figured I would explain what his surgery is going to be and reasons why it might not work. That might help all of you understand why Matt and I aren't always as optimistic about the outcome of surgery. Before I can do that you need to understand why he has the trach, so bear with me this could be a long one.

Why He Has The Trach
During the surgery to repair his esophagus the surgeon was dangerously close to the nerve that controls your vocal cords. We didn't know it going in but a big risk of esophageal surgery is vocal cord nerve damage, Nathan had worst case scenario. The nerve that controls his vocal cords was shut, paralyzing his vocal cords in the closed position.

When we breathe our vocal cords open and allow air into our lungs. Then whenever we swallow our vocal cords close and protect our airway so the food goes into our stomach rather than our lungs. Nathan's vocal cords are closed and prohibit him from breathing from above his vocal cords. His trach (as all are) is below his vocal cords so that he can breathe.

Surgery Info
Nathan will first be put under general anesthesia. Then a few different IV lines will be placed, a PICC line and a regular IV. He will need more than one IV site because it's a big surgery and there is a HUGE risk of bleeding, so he will more than likely need blood during surgery. They can use one IV for blood and another IV for other things. Putting the IV in will take a while, he's a very hard stick after all the IV's he had in his life.

Once the IV is in the actual surgery will begin. First a general surgeon (hopefully his pediatric surgeon Dr.B) will take rib cartilage out. Then the ORL doctor will use the rib cartilage and place it between his vocal cords. The rib cartilage will be used to "prop open" his vocal cords. Opening the vocal cords will give him a wider airway and allow him to breathe without the trach, hopefully.

Once the vocal cords are opened the ORL doctor will close his trach site. That means closing the opening they created in his trach and closing the stoma on the outside. This will leave him with just a little scar on the front of his neck that eventually we would never see. Who has ever see Catherine Zeta-Jones former trach scar?

I know it doesn't sound like much but keep in mind that this will be our little 3 year old boy's 14th surgery - in 3 years. Each time he has surgery he develops more and more scar tissue and that has effectively turned his abdomen into concrete (his surgeon's exact words), the scar tissue is tough to get through and remove. It makes surgery more difficult and makes everything take longer.

Once Nathan is out of surgery he will be taken to the ICU for at least a week. While he's in the ICU he will be heavily sedated, probably medically paralyzed, for at least the first week. He is scheduled to go back to the OR on September 1st for a trial extubation. At that time the ORL doctor will use a camera and look down his throat at the surgical site, as long as it looks like it's healing they will trial an extubation.

Possible Complications
Inability to Breathe - the ORL doctor said that some kids who had been trached for a while just panic once they are expected to breathe without the trach. Nathan has been trached since he was 4 months old, he's lived virtually all of his life with the trach so this is a very real possibility. Nathan has never reacted well to change, or when he's expected to do new things. He used to throw up at the mere sight of his physical therapist. He's not great with new things so hopefully he does OK with his "new" breathing.

Bleeding - while the general surgeon is operating he will be open for a while. That means there will be a lot of bleeding, it could be too much. This is nothing new for Nathan, it wouldn't be his first transfusion and I'm sure it wouldn't be his last. Then once ORL takes over they are operating VERY close to a major vein in his neck that runs right behind his trachea. Ever since he was trached there has been the risk of his trach "rubbing" through his trachea and opening up that vein causing a major bleed - that risk is still there during surgery while the surgeons are in there manipulating things. This is the one that really scares me. This one means there is a very real risk Nathan wouldn't make it out of surgery. I'm living in denial about it and I prefer to stay there.

Protecting his airway - Once Nathan has been extubated and has proven that he can breathe on his own it turns to safety. His vocal cords will not move at all, they won't be able to protect his airway. He is going to have to compensate for that with his swallow technique. He will need to be able to swallow safely for this surgery to be called a success. The first hurdle is his own saliva, if Nathan can't even swallowing his saliva safely this surgery is a complete failure. When I say "swallow safely" that means swallowing without anything going into his lungs, if something does go into his lungs that is called aspiration. He can't aspirate - that's how people get pneumonia. If he can handle his saliva we will move onto actual eating. The hope is that Nathan will be able to swallow safely, even thin liquids. The thinner the liquid is the harder it is to swallow, especially without vocal cords. If he can handle thicker liquids that is just fine with us, he will just be on thickened liquids for a while. If he can't even handle his saliva he will need to be re-trached. It will simply be safer for him to have a trach than live with constant aspiration. A re-trach surgery will mean at least 2 additional weeks in the hospital, and a devestated mommy.

Being a kid - Nathan hasn't breathed without his trach since he was 4 months old, at that time he was immobile and didn't do anything. Nathan has no idea how to run, jump and play and breathe effectively. He will need to prove to the doctors that he can hold his oxygen saturation while being a kid. This will be done in the weeks after he is extubated. He will be on a monitor that will monitor his oxygen level while he is doing things.

Going Home
Nathan needs to be able to breathe on his own to go home.
Nathan needs to be able to safely swallow at least his saliva to go home.
Nathan needs to be able to hold his oxygen saturation to go home.

It doesn't sound like a lot but it is. There are HUGE goals for him, goals Matt and I have had since we first heard that Nathan needed to trach, when he was 4 months old.

When Nathan first got the trach it was devestating to us. It completley changed the course of all our lives, we were suddenly the parents of a child with chronic medical needs. We were a family who depended on Apria (HATE THEM) to keep Nathan safe with his medical equipment. We were a family who couldn't go on vacation without first sending a few boxes full of equipment. We want to be a family who can travel without medical stuff. We want to be a family who doesn't have to live with the constant worry that comes with chronic medical needs. We want Nathan to have as normal a life as possible, and for us that means no trach.

We are hopeful that the surgery will work but aren't counting on it. Read over those possible complications and understand why Matt and I aren't "putting all our eggs in one basket" We want to be realistic, we want to be prepared. Nathan has never had surgery without a complication. We are just expecting the complication that comes with this surgery to be one that causes the trach to go back in.

Suprised

2011-08-14T21:32:00.000-04:00

We have spent the last two days at my Aunt and Uncles house on Crooked Lake. Nathan loves to go out there to see all our california cousins and go fishing with Aunt Susie. This year while they were visiting my cousin had a lot of his friends visiting as well. They are all in their early 20's, not married with no kids. I didn't think they would be at all interested in the boys and sort of assumed the boys would be an annoyance to them - I remember being that age.

So we got to the lake and were introduced to the people we didn't know (we had met some of them before) and then Nathan wanted to go fishing. Trevor however wanted to stay on the deck and eat, he does love to eat. Trevor and Nathan both had a great time and warmed up to all the new people quickly. I was also very suprised at how all the other people there were with the boys - they were all amazing.

At one point Nathan decided he wanted to play baseball with the other "big boys" so I asked my cousin if he would mind letting Nathan have a turn (they were plaiyng a real game and I didn't want Nathan to be in the way) but he didn't mind. They gave nathan the bat and let him have a turn. He hit the ball and then ran all the bases, all while the others were throwing it around "trying" to get him out. He had a great time running and got a home run (imagine how suprised I was). The whole way home, the part he was awake for, he talked about how he ran fast and won!

Then today we went back to the lake and everyone was again great with the boys. They included them in what they were doing and Trevor loved all the attention. I was just suprised that a group of young adults would be so good with the kids. It was very nice to see Nathan have so much fun with everyone. He was so sad when we had to leave, but Trevor's fever is back so we needed to get him home at a reasonable time.

I got a call today from the Cape Cod hospial, Trevor has a UTI, that is why his fever is so high. I am going to call the pediatrician tomorrow and get a prescription for an antibiotic. Hopefully that will help him feel better for good. He is starting to get sick again. His fever retunred today and he was cranky all day. I'm ready for him to be healthy again.

Vacation

2011-08-13T22:08:00.000-04:00

We are home from the vacation that wasn't. I'll start my story at the beginning...

We left for Cape Cod on Monday morning, the drive was good. We got to the house we were renting around 1 and started to unpack and unload the cars. We also went grocery shopping to get ready for the rest of the week. Then we met some family at the beach for a night-time concert. It was a good day, as good as a day can be spending it traveling.

Tuesday we went to Provincetown to take Nathan whale watching, he was VERY excited to go on a big boat and see whales. While we were walking around I noticed Trevor was cranky and felt warm, I figured he was getting more teeth. I gave him tylenol and we got on the boat. I was a little nervous since I usually get seasick but this time I was fine. Trevor was very fussy and whined for a while until he finally fell asleep. We saw tons of whales and Nathan was thrilled to pieces to see a whale jump out of the water! He told anyone who would listen that the whale jumped out of the water, he was so happy. Then it was time to go back to the harbor and it started to sprinkle so we all went inside the boat. Trevor was sound asleep in the carrier but was like a furnace on my chest. He slept most of the way in until we were about 15 minutes out then he woke up cranky! He cried and cried until I got up, I started to walk around with him and then a woman says to me "he's throwing up on you" I looked down and Trevor had gotten sick all over. Katherine and I took him outside and stripped him down to get out of the puke clothes, I took my sweatshirt off since that was also dirty and then we wrapped Trevor in my sister's sweatshirt. By this time he was burning up but we couldn't do much for him. When we got to shore we gave him more tylenol and walked to the car. We drove home (a 45 minute drive) and then checked his temperature, it was 105.7. Katherine and I took him to the ER, after Ginny went to the neighbor's house to find out where the hospital was. We spent 6 hours in the hospital with Trevee. They put an IV in him, did bloodwork, urine tests and an x-ray. Everything came back normal so they sent him home with a prescription for "just in case" antibiotics and called it a viral illness.

Trevor was sick until the day we left. He got tylenol every 4 hours all week just to kepe his temp under control. He slept all day every day. He drank apple juice and ate nothing. I watched a lot of TV.

Nathan had a great time with his Aunt Lisa, Aunt Katherine, Aunt Trisha, Ginny, and of course Mimi. They all went to the beach where he got to catch hermit crabs. They went mini golfing, it was pirate mini golf and he still talks about how fun it was. He went into the ocean to kick water at Aunt Lisa and scare her. He had so much fun. He told me he wants to go back to the beach again. He cried when we left, he wanted to go to the beach again.

Finally on our last day Trevor was feeling better so Trevor, Nathan, Aunt Trisha, Aunt Lisa and myself all went to the go-karts. It was going to be fun since Trevor could go on with everyone else. We paid for our ride and then stood in line. We were surrounded on every side by people since it's a fun attraction. Then I hear Lisa say "it just came out" I look over and I see Nathan holding his shirt and starting to panic, his feeding tube had come out and he was scared. Aunt Trisha took Trevor from me and I went to the car to get the syringe to deflate the balloon so I could put the tube back in. Much to my horror I didn't have the syringe with me, I didn't have one at all. That only meant one thing: ambulance. We needed to get the tube back in and that was the only way I could think of. So I asked the woman who worked at the go-kart place to call me an ambulance and explained to her what was going on. She called and then people came. We took Nathan out of line, took his shirt off and used that to stop the bile from coming out the hole and then went to a little seating area to sit down. We sat down and then a police car came, 1 cop was inside. He made sure we weren't in an emergency and then called the ambulance and told them to keep coming. Then the ambulance arrived, with lights and sirens. Nathan was thrilled with the lights and sirens! Then it happened, not 1 not 2 and not even 3 paramedics came out, there were 5 of them, 5 paramedics surrounded us to reinsert a feeding tube. I told them what I needed, they gave it to me and the tube was put back in. Then Nathan panicked that he wasn't going to go on the go-karts and he was going to go in the ambulance. We assured him he was going to get to go in the go-karts and walked back over to wait in line. The whole incident happened so fast that the same people who were behind us (and witnessed the incident) were now in the front of the line. They all let Nathan go ahead of them, it was so nice.

The woman who worked there let Nathan go on twice since he was so brave! It was so nice to see people who were so sweet to him after his little incident.

So our vacation didn't exactly go as planned. Trevor and I never even made it to the beach, oh well there's always next year.

Pictures to come later. I didn't take any since I wasn't involved in any of the fun!

Of Course

2011-08-07T12:11:00.000-04:00

Just thought I'd let you all know that we are leaving for Cape Cod tomorrow morning, so of course that means Nathan now has a fever and says he doesn't feel good. His trach still isn't producing green mucous but I'm bure that isn't far off considering the amount of stuff coming out. Of course he gets sick before we leave for vacation, he'd hate to go away and feel good.

In good news he's now a talking maniac. He can say so many words I can't believe it. Mostly when he speaks a work he will say the vowel sounds for the word, for instance Lisa has become "eeuuhh" but he can say some other consonant sounds, he now calls Grame "mee mee" so she's changed her name to MiMi to acomodate his speach. Sign is still his easier form of communication and when he is speaking a word I don't understand I'll ask him to sign it, and he still signs 98% of the time, but he is saying more now than he was a week ago and that's amazing!

Trevor has decided he's ready to walk. Yesterday Lisa dropped the boys off at my house and stayed so she could watch them while I worked. So we were all hanging out in the living room, Lisa was supervising the boys I was getting ready to throw my phone out the window from frustration and then Trevor just walked across the living room as if he's been doing it forever. Then he turned around and walked back to me, then laughed hysterically.

OK, I'll post pictures once we're back. No internet access while we are there!

Getting Ready

2011-08-01T13:43:00.000-04:00

As I write this I shold be getting things ready to go to Cape Cod in a few days but I'm not. I have the big things packed but nothing that any other person would ever even need. I have sterile water, trach ties, HME's, saline ampules, an extra trach, suction catheters... No clothes yet though, they will be packed this weekend right after I do laundry.

The boys are both doing great. Nathan is in his last week of summer program for preschool. His graduation in next week but we are going to miss it because of vacation. Trevor has started walking a little, he will take a couple steps and then fall down and crawl, crawling is faster for him right now so he likes it better.

Nothing has been going on so I haven't updated much. I have been working a lot to try to compensate for the week I'll be in Cape Cod and the month or so I will be in Boston. We leave for Cape Cod on Monday, Nathan's pretty excited to drive in Grame's car the whole way there. That will leave just Lisa and I in my car with Trevor. Hopefully he'll be good, I plan on bringing snacks to ensure his good behavior.

We've started talking to Nathan a little about his surgery. He knows that we're going to go see the doctor who is going to help him take a nap and while he's napping he is going to get his trach out. He doesn't know much more than that but he's 3 and doesn't need to know much more than that right now. As we get closer to surgery we'll talk with him more about what's going to happen but for right now he doesn't need to worry about it.

Here are a couple pictures of the boys from when we went to visit Matt's parents while they were camping. They both loved the camper and Nathan decided we're going camping next year with Grandma and Grandpa!

Nothing New

2011-07-26T20:05:00.001-04:00

Did you miss me while I wasn't updating? It's been a while because I've been pretty busy between work, the kids and managing to go to the gym most days.

The kids are great. Chubbo still won't walk, I think he's too fat and he loves to crawl. For now crawling is quicker and more familiar to him so he doesn't see a need to move around any other way. The doctor never called with bloodwork results which means it was fine. Also he never called with any suggestions after we faxed in the 3 day diet history we did, so he must also be eating OK too. Nathan is in preschool all summer and is having a great time. They are doing things more like a summer camp than school and he's having a ton of fun. He started eating applesauce at snack time and yogurt at lunch time - I know it doesn't sound like a big deal to most of you but it's huge for him.

We are now less than a month out from surgery and I'm starting to get nervous. I won't get into all of how I'm feeling but just know I'm not as relaxed about it as I may seem. Sending my 3 year old in for his 14th surgery isn't easy.

Matt and I joined a gym recently. The first few times I went I brought Trevor and dropped him off at their daycare and then attempted to work out, Nathan was at school. Trevor thought it was completley unacceptable that he wasn't in contact with mommy during those few minutes and screamed until they came to get me. As I was walking down the stairs towards the daycare area I could hear him, there were tons of people trying to make him happy but he just wanted me. Then I dropped him off the next day and the same thing happened. So now I drop him off at home with Daddy and then go to the gym alone. Really, I talked Lisa (my sister) into joining the gym with me so we go together most days. It's nice to have someone to go with, and it holds me accountable and makes me go more often. Lisa and I met with a trainer for a fitness evaluation (she won!) and an orientation to all the weight machines. He set us up with an exercise program and after the first time we did it I could barely walk, my c-section was less painful than the day following the workout! But it's getting better as my muscles remember they aren't just there to look pretty (he he he).

That's about all for us. The boys and I are going to Cape Cod in the beginning of August with my mom, sister, aunt trisha, aunt katherine and cousin ginny. It should be a great time and I'm looking forward to some relaxation on the beach before the stress of surgery. We are planning on going whale watching while we are there so Nathan should love that. Hopefully no one falls overboard ;)

What I wish you knew

2011-07-16T22:09:00.006-04:00

Here are some things I wish I could tell people when they meet us:

When Nathan was born it was supposed to be the happiest day of our life but it wasn't, it was the scariest. Nathan was 38 weeks when he was born but was sick and we knew it, we knew he was going to have to fight. He was in the hospital for 20 weeks before he came home, he was home for 3 weeks before he went back to the hospital. His first year of life was spent mostly in the hospital. We saw the nurses in the hospital more than we saw our family. Most of the time there was someone better qualified to care for our son than we were.

Don't stare at Nathan's trach, it's how he breathes. Don't ask me when he will no longer need it, when was the last time you survived without breathing. Don't treat him differently than you would treat any other child, he breathes different and that's it. Don't talk about him in front of us, he has a breathing issue not a hearing issue. Don't reprimand your child for asking questions, I don't mind answering your questions. Don't ask me what I did to cause this, it's mean and hurtful no matter how sincere you were being.

If you don't understand what he's signing to you, ask me, I would rather you ask me and can communicate with him than ignore him. If you have questions about his trach ask me in a nice way, I have no problem sharing but don't make him feel bad for something that isn't his fault. If you are nervous to let you children play with him that's fine, but he's just like any other kid and most times he can handle it. If you see him get 1/2 red it's just nerve damage don't laugh at him it's not his fault, we don't laugh at you for things that aren't your fault.

His stamina isn't great because of the trach, not because there is something wrong with him. He loves to play with other kids and gets sad when they don't want to play with him. He is old enough to see that he is being treated differently. He is just like any other 3 year old, he loves fire trucks and the movie Cars. He loves to run and jump and play. He is imaginative and playful, he loves to read and color. He is good to his little brother and loves to help.

If I'm short with you and seem like I'm on edge it means there is something going on with Nathan. I don't always want to talk about it, so don't push. All things Nathan are hard for me to talk about sometimes, I still feel guilty for his birth defect and that isn't going to change. Don't try to talk me out of it, it's annoying and useless. I've had many great doctors tell me it wasn't my fault and that doesn't matter to me, the guilt remains.

Please know that while you can make plans for your children a few months in advance and know you will be able to stick to them, I don't have that luxury. We make plans a few days in advance based on Nathan's health, we can't predict how his health will be in a few months. I'm not going to leave my sick son in the hospital so I can do something else (I did that once and regret it). When Nathan is sick I drop everything, and that may just be plans I have with friends. It's nothing personal it's just my life.

I could go on and on. I wish people just knew how to act but they don't...

The Verdict Is In

2011-07-06T21:26:00.000-04:00

Today I took Trevor to the pediatrician for a weight check. As you may remember when we took him for his 1 year well-baby visit and the Dr. decided that Trevor was too little. Today we got the final verdict, he's still too little. He's even smaller than he was last time we were there. His height is in the 10th percentile and last time his weight was in the 5th percentile, this time his weight was below the 3rd percentile. So we went to the hospital after the pediatrician for some bloodwork.

All babies have bloodwork at 1 year old to check their lead level, Trevor had that done and some additional stuff. The doctor diagnosed Trevor with Failure to Thrive, but he said he thinks Trevor is just eating too many fruits and vegetables. Too many foods that have very few calories are leaving him too skinny, wish I had that problem! We also have to do a 3 day diet history with him, so for 3 days we have to keep perfect track of everything that goes into his mouth and then send it to the pediatrician. They will evaluate it and then send it to a nutritionist who will tell us what changes to make to help him gain weight.

Here is a picture of what failure to thrive apparently looks like

Good Weekend

2011-07-05T13:13:00.000-04:00

This weekend was a great one! The boys and I spent the weekend at my parents house traveling to a lake each day. On Saturday we went to Hedges lake for a little while with the boys, they had a great time. Nathan loved playing in the sand with my cousin Jake and Trevor enjoyed being held and dipping his toes in the water.

Sunday we went to our first 4th of July party at my aunt's house on Crooked Lake. The boys, again, had a great time. Trevor and I ate way to much great food and Nathan played all day. The weather wasn't as great as I wish it would have been but we all still had a wonderful time. Nathan really loved knowing that even when we left we were going to Grame and Geege's house, way better than going home!

Monday was the best day of the weekend. The weather was great, sunny and warm all day. Trevor changed into his bathing suit as soon as we got to the lake (Crooked Lake again, another aunt's house) and didn't get out of it until it was dark out. The water was a little cool when he first got in and he whined a little but once he got used to it he loved swimming. He also loved crawling around in the dirt, he was covered in sand all day. Nathan also played in the sand all day, but he didn't go into the water at all. Nathan got to drive a boat a little and he had all 4 of his grandparents there with him - his ideal day!

We were surrounded by aunts, uncles and cousins who entertained both boys all day. Trevor could con all of them into feeding him all day and Nathan had them all playing with him. It's so nice to be around people who love my boys so much, and they love all the attention.

Once it was dark out Matt and Brendan did some fireworks for us. Most of us really enjoyed them but Nathan had a hard time with the sound. My Dad took Nathan into the camp and closed all the windows and doors so they were as quiet as possible. Once fireworks were over Matt took the boys home and put them to bed. Nathan had to get up early today for preschool, he is enrolled in their summer program so he doesn't lose to much ground with his therapy. Trevor slept a little late today, until 9, since he's been going to bed late this weekend. He's been sleeping a lot today cathing up on his sleep.

Since the 25th has passed it's less than 2 months until surgery. Hard to believe that in 51 days Nathan will go in for his 13th surgery and he's only 3. I know all of you are *sure* it's going to work but please forgive Matt and I if you talk to us and we're less than optimistic, we are trying not to get our hopes up. We're being realistic, 1/2 of these surgeries fail and we're trying to be prepared to be in the 50% who leave the hospital still with a trach.

Makes me think

2011-06-28T21:08:00.000-04:00

Today was an overall fun day for us. I had to work in the morning so that part wasn't so great for the boys but their day got better. Once I got home and they got up from their naps the fun began. I fed both boys dinner (Nathan asked for yogurt!!) and then I told them we were going on a suprise adventure. Nathan was so excited.

We were leaving out the back door. First he ran over to me with his backpack, unsure if he needed it or not - he did not. So he ran to the front door to put it back on it's hook and then ran back to me. Then he asked if he needed his sneakers, he did not, sandals would be just fine. So he jumped into the back porch and put them on. Then we were off.

Once we were all strapped into our appropriate seats Trevor sucked his thumb and talked to his feet and Nathan begas asking where we were going. Since I wasn't telling him where we were going he guessed and his guesses made me think. First he guessed the doctor, he was relieved we weren't going there. Then he guessed school - he was also a little relieved it wans't school. It was his third guess that made me a little sad - the hospital. That just shows how much time we spend there, way to much time. He was thrilled when he realized we were going to Hoffmans!Once we got there he had a great time riding all the rides. It wasn't as exciting for Trevor who is still too little to ride anything good. Nathan also asked to go on the carousel but he's to little to go alone and I can't take them both so we had to skip it. He was a little disappointed but was comforted by another ride on the train.

Tomorrow Matt and I are taking Nathan to go see Cars 2 while Grandpa watches Trevor. I can't wait to see how excited he is to see his first movie theater movie!

...there's the other shoe dropping

2011-06-24T21:44:00.000-04:00

Just when I thought Nathan was getting better, he's sick again. At least this time it isn't diarrhea but he does still have it. He's got thick green stuff coming out of his trach so it was off to the pediatrician today. It was also bad timing since today was supposed to be his last day of preschool. Oh well, he starts summer program in 2 weeks so he didn't really need to say goodbye to anyone.

The pediatrician called me while Nathan was there since Grandpa took him, Matt and I were both working and doing a tag-team with Trevor. Dr. said that it's tracheitis, we caught it before it got bad and turned itself into pneumonia, thank god. He's on an antibiotic, a steroid, a nebulizer antibiotic and a different nebulizer medicine that will help dry out his lungs. It should help him in a few days.

Trevor is also sick. Poor kid is losing his voice, he can barely cry sometimes. At times he reminds me of Nathan when he was little, making the cry face and I can tell he's really mad but there is hardly any sound (really he's a lot louder than Nathan ever was but it brings me back). So hopefully in a few days our house will return to normal health. One good thing is that this is Trevor's first illness ever, score one for breastfeeding for 6 months. Imagine if I had been able to do it longer!!

Tomorrow the boys are going to Grame and Geege's house for the night and then Sunday they are being handed over to the care of Grandma and Grandpa. Mommy and Daddy both have to work all weekend, I'm working 12 hours on Sunday! They will love their night away and getting to spend so much time with their grandparents. They will be fully spoiled on Monday I'm sure. Oh well, that's what grandparents are for - no rules just fun fun fun!

Pictures

2011-06-21T19:05:00.000-04:00

We had Trevor's one year old pictures taken the other day. A woman who works with my mom, Lessa, took them and they turned out beautiful. She took them outside on the campus of RPI and they turned out great! I love all of them, it's going to take me a while to decide which ones to print. Way better than going to JCPennys.

Today Nathan had a fun day at school, there was a bouncy bounce, pony rides, sno cones, cotton candy, and a petting zoo. The preschool they integrate with had their graduation yesterday and today was their family fun day, they invited Nathan's class to join them. Nathan's nurse texted me a picture of him on a pony, he was having a great time. I told his nurse about his scary incident from the other night with the bouncy maze at the baseball game so she would understand why he might get upset at the bouncy bounce, but he did fine and loved it.

After Nathan got home from school he decided he wasn't tired so I took both boys for a walk at the park down the street from our house. I put them both into the double stroller and we all had a great time. Nathan pointed out all the different things he saw and Trevor relaxed and sucked his thumb the whole time, it was very nice.

Once we were too hot to keep walking we came home and played inside for a little while. I'm always afraid that since Nathan only sweats on 1/2 his body he will overheat easily so when it gets really hot like today was I tend to try to keep him inside and cool. Since Nathan didn't take a nap and Trevor still isn't feeling great (I now think he's teething) they were both ready for bed early, bonus for mommy!

Here are a few pictures of the boys! The first one is Nathan on the pony, the rest are Trevor's one year pictures

3x5 Folded Card

2011-06-21T12:53:00.001-04:00

Mint Julep Thank You 3x5 folded card

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Father's Day

2011-06-20T10:30:00.000-04:00

I hope all of you had a wonderful Father's Day celebrating the important Father's in your life, we sure did. We started the morning with a visit to my parent's house, the boys had spent the night there. We had a great breakfast with my parents and sister. Then it was time to take the boys home for naps.

After their naps we went to a Valley Cats baseball game. I was a little worried that the boys were going to get bored and antsy and we'd have to leave early. Nathan had a great time but Trevor did get a little antsy. When we first got there Nathan caught a glimpse of their mascot Southpaw and was shaking he was so scared. So I picked him up and carried him into the giftshop, we told him he could get a souvenier. So we bought him a new hat and we bought Trevor a little stuffed animal that he loved to try to eat. Then we went to our seats and watched the players warm up. After that Grandma and Grandpa joined us and Nathan was thrilled to see them. Then we walked over to the kids play area and bought tickets so Nathan could go into the bouncy maze and play games. At one point Matt lost sight of him and walked back to me thinking we would just wait for him at the end. I knew it had been too long so I went around the back and looked for him, he was sobbing and just standing there. There was a guy working so I told him Nathan needed to come out and he helped me get Nathan out. Once Nathan was safely in my arms he hugged me and stopped crying. Then he told me he fell and was scared, poor kid. So he didn't want to use the rest of his tickets, too scary, so we left - still with all our tickets. I gave them to a guy walking in with 3 kids, he was very appreciative of the free tickets.

Then we watched the baseball game for a while. Nathan had a great time sitting with grandma and grandpa and clapping whenever everyone else did. We did the wave a few times and he loved that! Then Trevor started to get a little tired and antsy. The real problem was the people behind us were eating popcorn and not sharing with Trevor and he didn't like that! So Matt and I took turns walking around with him. Then we decided to leave a little early. We went home and put the kids to bed then the adults sat outside and made s'mores by the fire. It was a great ending to a great day.

Not So Chubby

2011-06-14T21:57:00.000-04:00

As you all know I call Trevor Chubby. I call him that because I truly think he is just that, chubby, and I love it. I have nothing to compare him to. Nathan wasn't on the growth charts for YEARS after he was born. He was born in the 50% for weight and quickly fell off them. He didn't get back on the charts until he was almost 3 and he's been slowly climbing ever since. Trevor was always right around the 50%, until today.

We took both boys to the pediatrician, Nathan for a hospital follow-up and Trevor for his 1 year well-baby visit. Nathan is doing wonderful - weighs 27lbs. Trevor isn't doing as great in the weight department. He has only gained 6ozs. since 4 months ago and is an inch longer. The length is fine but he fell from the 50% to not even the 5% mark, a big decrease. I think it's because he LOVES fruits and vegetables and fills up on them at each meal, he eats less of the "fatty" stuff. The doctor agreed, he is probably just filling up on stuff that is good for him but isn't helping with weight gain. He needs to gain weight. We have to take him back in 3 weeks to get him weighed and he needs to have gained some weight by then.

To facilitate weight gain we are giving him pediasure each day. Today was the first day of it and he seemed to like it a little. We are also feeding him as much as he wants. He does love his fruits though and they don't have many calories in them. Too bad he doesn't have a feeding tube, then I could give him whatever we needed to without regard for what he would like (just kidding, sort of). The doctor isn't worried at all, he doesn't think there is anything wrong with Trevor. He just wants him to be as healthy as possible. At 1 year all kids have routine bloodwork done to check their lead level and to check for anemia, we have to wait a while. The doctor wants to wait until we go back to see him to get the bloodwork done. If Trevor hasn't gained any weight he is going to order some more bloodwork so if we wait he will only get stuck once.

I always thought Trevor was chubby and compared to what Nathan was like at the same age, he is. Nathan was so so so little at the same age. I guess Trevor should just be more chubby than he already is. Since he is still so little we have to keep him backwards for a while longer in his carseat which is really no big deal. The only reason I want to turn around his carseat is for a weird reason. Nathan's seat is behind the driver and Trevor's is behind the passenger. Since Trevor is backwards the passenger seat has to be very far forward and straight up, not so comfortable. He doesn't fit behind the driver since Matt wouldn't be able to ever drive the car. Nathan signs and it's impossible to see him when you are driving. I want to be able to talk to him while we are alone in the car but I can't see what he's saying to me. Once we can turn Trevor around Nathan can sit behind the passenger and Trevor can sit behind the driver. Then I will be able to see Nathan and talk to him when we're alone in the car.

OK, I hear the dryer beeping at me. Where does all the laundry come from? I swear people are droping it off at my house, there is no way 4 people can make this much laundry.

Trevor is One

2011-06-12T21:03:00.001-04:00

On Saturday we celebrated Trevor's first birthday with a big party for him. We didn't invite all that many people but when we had everyone cramed into our house it seemed like there were tons of people here. We all had a great time, especially Trevor. The house was full of friends and family who all overdid it with the gifts (which I'm still putting away) but we are very grateful to have gotten all those wonderful new toys. Nathan doesn't realize they aren't all for him, he loves them just as much as Trevor does.

Trevor had the best time with his birthday cake. It was a Mickey Mouse party so of course there was a Mickey Mouse cake. I baked the cake and Matt decorated it, it looked amazing. We put the whole cake in front of Trevor and he had a blast! He dug right in as if he's been eating entire cakes his whole life. At one point he even put his mouth down to the cake and bit a piece off - he's such a pro! We did take it away from him once he had some. We didn't want him to overdo it, especially since he'd already thrown up a little from eating too much.

Nathan was Trevor's big helper and helped open all the gifts. Thankfully Trevor is still too little to open anything himself so Nathan had a wonderful time. Trevor wasn't all that interested, he just wanted to crawl around and look for food crumbs on the floor. Trevor got a ton of new toys, one was a drum filled with all different instruments. Nathan took that toy over to Geege who opened it up and formed a band with all the kids, the toy was a hit. Nathan picked the trumpet and tried to play it, he couldn't do it since he doesn't exhale through his mouth. One other little boy 'A' noticed that and handed Nathan a different instrument and gave Nathan that to use. It was so sweet to see A switch with Nathan so that Nathan could also make noise with the band.

One of my fears for Nathan has always been that other kids will alienate him because he's different and for the most part that is true. Most kids won't play with him because he signs and looks different and it's heartbreaking for me. A is the son of great friends of ours and it only a year older than Nathan. He's always been great with him, I love seeing the two of them play. A was the first kid to even ask Nathan to go play with him, I love that kid (and his parents too)!

Now after that sidenote, after all the kids went to bed we played games with the adults. Most people had to leave but some were able to stay and play. It was a great time. It was so nice to talk to other adults and just relax. I feel like getting ready for Nathan's surgery later this summer is very stressful and just having a few hours to play games with my friends was great.

Here is a picture of the aftermath of birthday cake

Home... Finally

2011-06-11T09:03:00.000-04:00

On the 8th I had to work and got back to the hospital a little after midnight. I talked to Nathan's nurse about leaving early in the morning. She told me that she needed to talk to the doctor to make sure all his discharge papers were ready to go - she came back in and told me they weren't. The night doctor also wasn't told he was being discharged and nothing was ready. I was exhausted and tired and let it go for the night.

At 6am I woke up to Nathan clapping, it's how he gets our attention instead of whining. I looked at him and he told me his eyes were open and he was awake. So that meant I was awake also. I figured since we were both awake we may as well pack up and leave. In came his nurse and I told her we were ready to leave. Then she tells me the night doctor said we needed to wait for rounds, at noon! There was no way I was waiting for rounds just to be discharged with no answers. So I told his nurse we were just going to leave and started packing. Then I noticed the doctor was sitting right in front of us so I went to talk to her. I said, I know you're not going to discharge us so we're just going to leave but can you at least write us prescriptions so we can still have his meds filled. The doctor told me that she had called the attending at home and was waiting on a call back. Apparently residents are so useless they can't even decide to discharge someone on their own, even when the attending had told us the day before we could leave.

So a little while later Nathan's nurse came in prescriptions and discharge papers in hand. We were home by a little after 7am. It was great to be home, finally. That morning while Trevor was still with Grandma and Grandpa I cleaned the house for Trevor's birthday party. Nathan had a great time playing with all his toys. Then Trevor came home and Nathan was so excited to see him, that faded once Trevor started touching his toys though.

Yesterday was Trevor's first birthday; I can't believe he's one already. In the morning I took Nathan to preschool to visit so he isn't so overwhelmed when he goes back on Monday. Then in the afternoon all 4 of us went to play mini-golf. Nathan loved it, it was so cute to see him having so much fun. The first few holes he would his his ball first and then he'd hit whichever ball he stumbled across first on his way to the hole. Then towards the end of the course he'd put his ball down right next to the hole and start from there. He had a great time, it was a lot of fun to watch.

Then we went to Grame and Geege's house to drop the boys off for their sleepover. Trevor got to eat a cupcake after dinner and he was thrilled. He made a mess of himself and loved every second of it. Nathan got a new ride-on tractor at Grame and Geege's house and drove it around helping to clean up all the little branches that are down from the recent storms.

Today is a lovely day for a picnic, it's cold and rainy outside. We have to move Trevor's party inside but that's no big deal. Hopefully everyone still has a great time and I know there will be tons of great food. I will post pictures in a few days of Trevor's party.

Going Home

2011-06-08T01:20:00.000-04:00

Well, things are status quo around here. Nathan still has diarrhea and the doctors still have no idea why. They took a stool sample the other day to test it, and it came back positive for C. Diff - just a yucky bacteria that makes the hospital put him on contact precautions so he can't even leave his room so he doesn't give it to other people. Needless to say that when I got here today I was upset. He's been here for 3 weeks, the last thing they need to do is restrict him to his room.

So when the doctors all came in I told them time was up. They aren't making him better they are only making him worse. He is no better now than he was when we were first admitted. The diarrhea is the same, everything is the same. They've done 3 weeks worth of tests and got no answers. It's time to stop and admit defeat. The doctor agreed. We are going home tomorrow.

We have an appointment with our GI doctor in Boston for August, we have an appointment with our pediatrician on Tuesday - both boys have appointments that day. Nathan for a weight check and Trevor for his 1 year well baby visit.

So tomorrow morning we get to leave. Then we can start getting excited and ready for Trevor's party. I am so glad he's coming home. I am so sick of the hospital. Today I left for work from the hospital and then came back here once I was done. I want to go home, sleep in my own bed, take a shower without shoes on. I just want to be home. Nathan likes the attention he gets in the hospital. He likes that most people come to see him every day. Today he was thrilled to pieces to see Rob, who is a friend of my mom's friend Vicki. Rob just stood in the window and waved and Nathan was thrilled to see him - he waved back. Nathan has been in the hospital so much he's starting to like it. And I don't like that. We need to be back home. Tomorrow night, for the first time in a VERY VERY long time, we will be. All 4 of us will be under one roof - except when Matt is working of course.

Telethon Day

2011-06-05T21:11:00.000-04:00

Today was the Children's Hospital telethon, it was on for 11 hours on Fox. It was where Nathan became famous - in his eyes at least. Geege (my Dad) was interviewed and did great! Nathan was quietly sitting there reading his books while Geege talked about how important it is to keep him busy and how hard it's been on our family to see him so sick. He also talked about how all the grandparents and my sister pitch in and take care of Trevor and sit with Nathan when one of us isn't able to. It was great. The little girl next to us has the telethon on her TV and the nurses can see it from the desk where they were sitting. So I was sitting in Nathan's room with him, Grandma and Grandpa when all of the sudden all the nurses and pca's started looking at us; then they told us Nathan was on TV. So we turned it on just in time to see most of the interview. The telethon raised over $2 million dollars, woo hoo!!

Nathan still has his catheter in, he will have that in until tomorrow after his tests are over. He will have an ultrasound and VCUG, we won't know results until sometime on Tuesday. For now Nathan is sick of the catheter - it feels weird and he doesn't like it, he's ready for it to come out.

Today he started pancreatic enzymes. The GI doctor said that it's clear the antibiotic isn't working so we may as well try something else. We will know quickly if they are going to work or not. I really hope they do work, I'm not ready to go back to no ideas on how to fix this. I am hoping to be home by Trevor's birthday at the latest but there are never any guarantees. We just have to wait and see.

Nope

2011-06-04T20:56:00.000-04:00

We got the results, there is no fistula. I have never been so upset at good news. I'm glad he doesn't have the fistula and need a big surgery, I'm upset because that means we still don't know what is causing his diarrhea.

We had a consult with albany peds GI, he had a few suggestions to offer. He suggested the diarrhea might be caused by a severe bacterial overgrowth - I disagree but am willing to give that theory a go. Nathan is now on antibiotics, they don't seem to be helping. We're going to give them through the end of the weekend to work then on Monday we'll try out a new theory. Monday we will add in pancreatic enzymes and see how that goes. At this point I think anything is worth a try. He's been so sick for so long we'll do anything to make him better.

In kidney news the urologist is a little concerned with how his kidney looked in the last ultrasound. I guess it looked like there was "tissue" in his kidney, it could be the beginning of a stone or it could be a severe fungal or yeast infection. They placed a catheter today and are going to leave it in for 48 hours. After that they are going to do an ultrasound to look at his kidney to see how it looks. Then the urologist is going to do a VCUG, for that they put dye into his kidney through the catheter and see what happens. We are hoping all goes well. The urologist is always very careful with Nathan and takes all changes seriously because he only has one kidney and we need to do everything we can to protect it. His kidney function blood tests have been fine so he isn't all that worried.

I've made sure all the doctors know that we need to be home by Friday. We have to be home because Trevor has a big birthay coming up - he will be 1 on Friday. I can't believe a year ago I was still pregnant. Still getting used to thinking about the way things would be with two kids, little did I know it would be NOTHING like I had imagined.

I would like to thank my Mommy who took me out for a nice day today. We went shopping for Mickey Mouse stuff for Trevor's party and then went to get ice cream and pedicures. It was a wonderful break from the hospital for me. She is also staying at the hospital for me tonight so that I can get up early tomorrow to go to work. After I get out of work it will be back to the hospital for me.

Make sure you all watch the Children's Hospital telethon tomorrow, Nathan will be on it. They will be filming from the hospital and they already taped Nathan once - he was reading a book with Grandpa. Tune in and you just might see him, and see how cute he really is.

No News

2011-06-01T21:51:00.000-04:00

This morning at 8:30 Nathan went to rediology for an 'Upper GI with Small Bowel Follow-Through' basically they were injecting contrast dye into his belly to see where it goes. After the dye was injected they did periodic x-rays all day long to follow the dye through his gut. For a while they were making us sit in the waiting room between x-rays but after a while Nathan was done, I was bored so we went back to his room. Then they started coming to us for x-rays, it was better that way.

We have no news from that study today. The last x-ray wasn't done until almost 9pm so the radiologist is going to review all the films tomorrow. The study he had yesterday was normal.

I talked to our surgeon in Boston today, Dr. B - we love her. She said that the cyst doesn't need to be removed right now, it can wait a while. Before she does remove it she wants an MRI done to look at the cyst and see which type of cyst it is. The radiologists in Boston said that what Albany Med is seeing as a cyst could just be a big gallbladder, so she wants the MRI before she does anything. Since he isn't having symptoms that are adversely affecting him she is going to wait on the surgery for a while. If the fistula is there then that changes things. The fistula would need to be repaired sooner rather than later and that would be an abdominal surgery. Since she would be in there anyway she would operate no the cyst at the same time. So then he would need an MRI before he has the fistual repaired. If he doesn't have a fistula we're back at square one with the diarrhea but he won't need surgery right away.

Dr. B also said that because he's having surgery in August to remove his trach she wants to wait a few months after that to do anything with the cyst, unless it starts causing problems. The cyst surgery is a big one that requires a lot of reconstruction, and so is the surgery he's having in August so she doens't want him to have two big surgery's so close together. She wants him to recover completley from the surgery in August for a few months before she does anything else. She, and we agree, feels that the August surgery is the more important surgery - decanulation!

So we won't know what's going on until we get results from the Upper GI test today. Once we know what that study showed we will know, surgically, what needs to be done. For now we wait, again.

Tuesday Test Day

2011-05-31T19:47:00.000-04:00

Today we made a little progress, and I do mean a little. Nathan had a test done, I can't remember it's name, but they had to put an IV in so they could inject a radioactive isotope and see what it did. The test was for his bile/gallbladder - we were checking something out with his cyst, not sure what was really happening. What I do know is once they injected the isotope Nathan had to lay still, he was strapped down, on a table for an hour. They turned a movie on for him and thankfully he fell asleep.

After that part was ove the doctor wanted a second part done, that part meant he had to be hooked up to an IV with a slow infusion of something (I also can't remember the name of this thing) while he again layed still and they watched what happened. It's like the longest x-ray ever. For a total of 2 hours he was strapped down to the table under the machine. I would have been a little antsy the whole time but he was great. He watched Finding Nemo and the first part of Madagascar. Thankfully he fell asleep for most of the first part. He woke up and was a little antsy for the last 20 minutes - he was ready to get up.

We don't have any results yet, we won't know anything until tomorrow afternoon. Tomorrow morning he's having an upper GI with small bowel follow-through. That is putting contrast into his belly to see where it goes. This is the test to see if he really does have a fistula in his belly. So we're back to waiting.

Weekend

2011-05-30T11:16:00.000-04:00

This weekend was a fun one for me, thanks to our family who made it possible. On Saturday I took a break from staring at Nathan (he won't let me actually play with him usually so I just sit and stare) so I could go out to Crooked Lake with my mom, sister and Trevor so we could see Aunt Sue and Uncle Chris who are here for the weekend. We had a great time and Trevor loved being able to get his toes wet. My in-laws stayed with Nathan so he wasn't alone. And to be honest, he much prefers a grandparent be with him at all times since Mommy is so boring!

Then Sunday I went out yet again to a christening while my in-laws stayed at the hospital for the day. I had a great time talking to people about things other than Nathan's pain level, bowel movements and imminent surgery. It was fun to watch Trevor realize he isn't the smallest person around. He kept poking the baby and then smiling at me - he couldn't believe the baby was real! They had a pool and Trevor demanded to be taken swimming, which was unfortunate for me since I didn't have a bathing suit. Luckily he's cute and someone else took him in the pool, I think he might be a fish! Trevee kicked his feet the whole time, he absolutley loved the pool. Then he started to turn a little blue and he was shivering so I took him out in true "mean mommy" fashion. Then my mom took Trevor home since it was nearing bedtime and all us "adults" stayed and talked. We had a great time all day.

Today is just another day of waiting. Since it's a holiday we aren't expecting to hear from Nathan's surgeon so we're just sitting around. I packed up a lot of Nathan's toys and will be sending them home with Matt in anticipation of going to Boston soon.

Lately a lot of people have been asking how I'm doing, I'm fine is my general response. I don't often get into how I'm really feeling where Nathan's health is concerned. Just know that I've been dealing with Nathan's chronic health problems since he was born, I'm used to it. That doesn't make it easy to watch him struggle and suffer, but I'm OK.

Trevor

2011-05-27T19:24:00.000-04:00

I feel like sometimes I don't mention Trevor in this blog as much as I probably should. So I'm going to devote one entire post just to him.

Trevor is huge, his nickname is Chubby. Sometimes when I'm trying to get him to smile at me I sing "Chbby, Chubby, Choo Choo" and he loves it. Last night we went to Aunt Sue and Uncle Chris' camp on Crooked Lake with my mom and sister. Trevor hasn't seen the california relatives since last summer and he's not at an age where he remembers people yet so they had to win him over. Aunt Sue did it with food, a banana. Trevor loved her once he realized he could get food from her, he loved sharing a banana with her. Then Uncle Chris came in and Trevor went right up to him. We walked down to the water and Trevor took his first dip in Crooked Lake with Aunt Susie! He loved the water, I was a little suprised, but he sat right down in the water and tried to catch everything that was floating. Then he tried to eat the sand, I'm sure he'll eat a ton of it this summer!

Then we went down to see Aunt Jean so the boat could get put into the lake at her house. Trevor had a great time wiggling all around trying to get free from our arms so he could crawl around the deck and eat everything on it - bugs included.

Then it was off to the Towne Tavern for dinner. By the time we got there it was about 8, his usual bedtime, so I was a little nervous that he would have a meltdown about being tired but I was wrong. Worrying was useless since he was perfect. First Grame held him while he ate crackers, then Uncle Chris held him and he ate more crackers, then Aunt Sue held him and he ate some salad (carrots and dressing). After that our dinner came and he had a grilled cheese sandwich. By that time it was after 9 and we were on our way home.

He was changed into pajamas before we got into the car in case he fell asleep, but he didn't fall asleep. He talked the whole way home. Then he was so excited to sleep in his own crib he couldn't contain himself. He stood up in his crib and was bouncing! He was tired though and slept until 9 this morning. Now he's back with Grandma and Grandpa and I'm sure he's thrilled.

Well I guess I do have to mention Nathan. He's doing fine while we're still just waiting to hear from Boston. Hopefully we'll hear by Monday.

Still Waiting

2011-05-26T23:12:00.000-04:00

I feel like I'm in an airplane circling the airport, not allowed to land. So close to where I want to be but things aren't lined up correctly and it just isn't happening yet.

We are still at Albany Med waiting for Boston to happen. It's still going to be a few days. Nathan's surgeon has his records and all his studies from the last few days, she hasn't had time to review them yet. She is the attending on service this week in Boston so she's been really busy. She's going to call as soon as she has a chance to review them.

Nathan is on continuous (16 hours a day) feeds - I can tell he's in pain whenever he eats and for a while after he's done. I hate it, I feel like I"m torturing him but he needs to be in a good place nutritionally so that when his surgeon says she can do the surgery he's ready for it.

We are going to be at Albany Med until at least next week. We have no plan as of right now. We're still waiting, and I'm not very patient.

It's not a food allergy...

2011-05-22T20:56:00.001-04:00

There is good news, kind of bad news and frustrating. The good news is that the Doctors think they have finally figure out what is wrong with Nathan. The kind of bad news is that he will neer surgery to fix it. The frustrating news is that we are waiting to be transferred to Boston to decide how to proceede.

The good news
The doctors were quick to say they thought Nathan had *another* virus and this episode of vomiting/diarrhea would pass. I knew that was wrong. I knew it wasn't just another virus. It's not very likely that he's had virus and virus after virus since February. I knew there had to be more to this mystery illness. I asked for an abdominal ultrasound, the doctor said his last one looked fine. That's strange mostly because he's never had one before - so imagine my suprise to find out it was fine! She reviewed hsi records and realized I was right, he's never had one, so it couldn't have been fine. She ordered one just to make me happy, not because she thought he needed one. She said if it was negative they would do a CT (also just to make me happy, and because the pediatrician said it was worth a shot) to look at his belly that way. Well, the ultrasound revealed interesting findings so they did the CT. The nurse who went down with us was amazing - she sang to Nathan the whole time he was on the table. He even told her what animals to sing and she did, even though elephant was one of the animals!

Well, the CT also revelaed interesting things. The contrast that we had given him an hour before the study was in his stomach and the first part of his small intestine, it wasn't in the middle part of his small intestine and then it was in the last part of his intestine - this would explain the diarrhea. If the findings are correct it means he has a fistula in his intestine. That means that two pieces of small intestine are connected where they shouldn't be connected. That is causing his food to go through him way to fast, because it's skipping most of his intestine, and not be absorbed - diarrhea.

Also, they saw a choledocal cyst, type I. That means a cyst is in his common bile duct going down into his small intestine from his gallbaldder and pancreas. The cyst is what is causing the vomiting, diarrhea, and abdominal pain. The risk of the cys is that it can rupture and spill bile into his peritoneal cavity and that can make him septic, or it can cause an infection in his liver or pancreas. So the cyst needs to come out.

The kind of bad news
If the fistual really is there it will need to be repaired. The fistula could just have been an error and a weird fiding from his weird anatomy. He needs another study to determine if it's really there or not. And the cyst needs to come out no matter what.

The frustrating news
We want to go to Boston since we're pretty sure he needs surgery. Our surgeon is in Boston, all the doctors we love are in Boston. All the doctors we trust are in Boston. We want to be in Boston. The doctors here are working on a transfer but it's not as easy as I would like it to be. I asked to be discharged with the knowledge that I will just take him there myself and just go to the ER. The doctors here aren't sure about that. We won't know what will happen until tomorrow when our surgeon is back. She wasn't on this weekend and the covering resident in Boston wasn't comfortable making any decisions about Nathan without her since his history is so complicated. So now we wait.

Back Again

2011-05-20T00:21:00.000-04:00

Nathan is back in the hospital.

On Monday he went to school and his nurse called us part way through the day and asked us to come pick him up. He was exhausted and was laying down in school. He didn't have the energy to make it through the day so we went to pick him up. He went straight to bed when he got home and stayed there for most of the rest of the night. He went to the pediatrician that night and she didn't have any great insight for the diarrhea. She was concerned that he was STILL having it but she was going to talk to the other Dr. (the one we usually see) and call us back.

He stayed home from school on Tuesday to sleep.

Wednesday he went to school in the morning, by the time we got to school he had been awake for 1.5 hours and was telling me he was tired. He just wanted to lay down. I told his nurse to call me if she didn't think he was going to make it through the day. I called the pediatrician when I left the school because I was a little worried about how much he was starting to throw up and I could tell he was getting dehydrated. Then my phone rang and it was Nathan's nurse, he was ready to come home - it wasn't even noon yet. Then the Dr. called back and told us to take him to the ER since I knew he needed fluids and they can't do that in the office.

In the ER they rehydrated him. Then a stupid resident came in and told me she thought he had a UTI and that UTI's cause diarrhea, I told her that wasn't the case. This isn't how he presents with a UTI, she didn't believe me. They ran a urine test and he doesn't have a UTI. The doctors are now thinking he has another infection - he doens't have another infection. I am finding it hard to believe this has been one infection after another since February. We think there is something wrong on the inside, with one of his organs or his intestines, but something other than an infection.

Tonight they decided to start feeding him and it didn't go well. The Dr. said he just wasn't ready and will try again tomorrow. I plan on telling the attending Dr. (not the stupid resident, but a different stupid resident from the one in the ER) that they either need to make a plan or transfer him to somewhere where they care about fixing the problem rather than treating the symptoms - which is all they seem to be doing.

Trevor is doing great. He was thrilled to get to Grandma and Grandpa's house this morning, but I think that was more because he wanted a nap and didn't care where he took it. He followed me around and every time I stood still he would cry until I looked at him then he would stop, suck his thumb, and close his eyes - he wanted a nap.

Matt and I are sending a big thank you to all 4 of our parents and my sister. All 5 of them have been amazing these last few months with helping to take care of Trevor to going to visit Nathan, and never arriving empty handed. We are so grateful to you for all your help. Having Nathan in the hospital is hard but knowing that Trevor is OK makes it easier. Thank you so much for all you have done and continue to do for us and our boys.

That's all for now. I'll let you all know if anything changes.

March for Babies

2011-05-15T18:52:00.000-04:00

Today was our March for Babies and boy was it wet! When we first got there the rain wasn't all that bad, but it slowly got worse. By the time my mom arrived with both boys it was pouring out. We put Trevor in the stroller with a rain cover and Nathan was in a different stroller with his Lightening McQueen unbrella over him. Both boys managed to stay dry but it was wet for the rest of us.

We had a couple umbrella failures before we even started, but since everyone on the team came with more umbrellas than people we were able to switch out the bad umbrellas with better ones and we mostly stayed dry with the exception of the bottom of pants and shoes! Overall it was a wet walk but we managed to have a good time.

The BBQ at our house after was also very nice. We had a great time with everyone. Both boys were exhausted by the end of the day and went to bed early. I think Trevor ate more food than I did. It was cute to see him eat cake, frosting first and then shoved the entire piece of cake into his mouth all at once. I can't wait to see him on his birthday with his Mickey Mouse cake.

Nathan is slowly, very slowly, getting better. He is gaining more energy each day and I can tell his stamina is getting better each day. His diarrhea is also slowly getting better. He has a weight check tomorrow at the Dr. so hopefully the pediatrician will be happy with how he's doing so far.

I talked to the ORL Dr. (the trach doctor) and Nathan's decannulation is scheduled for the 25th of August. That is the earliest the surgeon could get as much OR time as he will need for the surgery; it's going to be a long one. We are going to go out to Boston on the 24th for a pre-op appointment and then go to the hospital on the 25th for surgery. We are all going to stay in the hotel on the night of the 24th and then just Matt and I will stay in the hotel on the 25th after surgery. Nathan will be in ICU for about a week, he will be VERY sedated, probably paralyzed so he doesn't risk moving and injuring/damaging the surgical site. It's going to be a big surgery and there is no guarantee that it's going to work. I'll get into more details later. For now I'm going to close by posting a couple pictures from the walk today.

Before the walk

After the walk

Home Again

2011-05-11T11:15:00.000-04:00

Nathan came home on Saturday, the day before Mother's Day. It was great to have him home for Mother's Day. Grame spent the night with Nathan on Friday night so that both Matt and I could work. Then she brought him home on Saturday afternoon.

Nathan is doing better but he still isn't great. He is still having diarrhea, the doctor said that will probably last for a while. He is also still getting his energy back. He's been so sick for so long and has been just laying in bed for so long that he has no energy anymore. He is still working to get his energy back. It takes a lot out of him to play all day!

Mother's Day was nice but Nathan still wasn't feeling great. Matt went to see his mom in the morning while both boys tooks naps. Then we all went to the park and played for a little while then went to Hoffman's and rode the train. Then Matt had to work so my parents and sister came over and we all had dinner. It was a nice day, perfect for Nathan who is still sleeping a lot.

Today Nathan went back to school. It was cute to see him walk in, he was like a celebrity. The teacher from the other class (Mr.D) was standing at the door and his class was around him when Nathan walked in. The kids were all giving him high-fives and hugs, telling him they were so happy to see him again. It was sweet. Then when the other boys from his class got there they all told him they were happy to see him. Nathan was nervous to go back to school but I think he relaxed a little when he saw how happy everyone was to see him.

Trevor is doing great. He is a mad man with crawling, I can't believe how fast he goes. He is into everything and then puts everything into his mouth. It's so weird to have him do that since Nathan never did anything like that. It's funny to watch him eat, he shovels as much food into his mouth as possible and does is as fast as possible. I'm sure that is how all kids eat but Trevor is our first baby who eats by mouth so I think everything is cute. He then drinks until his mouth is so full he has to let some of the formula drool out of his mouth. Needless to say he's a disaster after he eats.

On Sunday morning I went in and got Nathan up first then he ran right into Trevor's room, opened the door himself, went over to the crib, stood on the bottom rail of the crib so he could reach Trevor and rubbed his head. He was so excited to see his little brother again - it was adorable.

I hope everyone else had a great Mother's Day. We are gearing up for the March for Babies this weekend. It's on Sunday at The Crossings, starts at 10am registration is at 9am. Then we are having a BBQ at our house after the walk for our whole team. Hope to see you all there!

Just a couple pictures of the boys that we had taken before we left for Myrtle Beach. Grame scanned them for us, thanks Grame!

Hopefully Soon

2011-05-05T22:32:00.000-04:00

Nathan has been doing really well these last couple days. The doctors realized that he does have dumping syndrome which is why his blood sugar was droping. He just wasn't able to tolerate the bolus feeds (when he gets all his food at once) of formula. He can tolerate bolus feeds of blended diet because that food is thicker and takes longer to move through his system.

The kitchen at the hospital tried to make his blended diet but it was a complete disaster and we didn't even try to feed it to him. So the doctors decided to try putting corn starch into bolus formula feeds, the corn starch it supposed to help stabilize his blood sugar but it didn't work. Then they tried oil and that seems to be working but he only got 1 feed with that. Hopefully tomorrow his blood sugar holds steady and he will be able to come home soon.

Right now, Daddy is at the hospital with Nathan since I needed a break. A week in the hospital was my limit so Matt went out to stay with Nathan. When Matt got there we told him that Daddy was going to stay with him and Mommy was going to go home and stay with Trevor. He cried and said that Daddy couldn't sleep in Mommy's bed! Matt said he stopped crying as soon as I left though.

Trevor is back at home with me. He was so excited to come home today and chase the cats around the house. I think Toggle missed him because he let himself get caught a few times. Dar (a good friend of my mom's) brought dinner and wine!! over for Lisa and I tonight. It was REALLY good and it was nice to have a home cooked meal after eating in the hospital for so long.

Tomorrow Daddy has to come back home to work and Mommy has to work also so Grame is going to go to the hospital to stay with Nathan for us for a couple nights. Hopefully Nathan will be able to go home either Friday night or sometime on Saturday. Nathan is pretty excited to have Grame stay with him this weekend.

We're busy getting ready for the March for Babies. Today I cleaned the front porch in case the weather is bad and we need to be inside, so people will have somewhere to go. Hopefully it's nice out and we have a good turnout for the team. Everyone is welcome to come walk with us, Nursery 5. The walk is at 10am (registration is at 9am) and we are having a BBQ at our house after the walk for our whole team. Hope to see you all there.

Questions and Answers

2011-05-03T07:32:00.000-04:00

Yesterday was a pretty good day for Nathan. Aunt Lisa (Kramarchyk) came to visit and he was really excited to see her. Nathan kept telling me to move, and sit in my bed while Aunt Lisa was allowed to sit in his bed with him and color and read all day.

The doctors seem to think they've figured out his diarrhea, and they seem to think the worst is over. Here goes my explination.

Nathan initially got sick with C. Diff that was hard to treat. It required 2 courses of antibiotics and the antibiotics along with the C. Diff made his gut weak and sick. His gut was tired and worn down from all the bad bacteria and wanted a break. It was also more susceptible to infection since it was weakened. He seemed to improve while he was on his 2nd course of antibiotics and that's when we went to myrtle beach. While we were in myrtle beach all the adults ate at Chick-Fil-A and seemed to get food poisoining when in reality we all got norovirus which is essentially the same thing. It's highly contagious and has the same symptoms as food poisoining. Because all the adults had a healthy gut to begin with none of us got all that sick and recovered quickly. We still had to feed Nathan while we were sick and because Nathan's gut was weak and sick from his C. Diff he got norovirus easily and much worse than the adults had it. He was also more prone to dehydrate quicker because he was too skinny to begin with. So that along with the diarrhea from the norovirus made him get as sick as he did as quickly as he did.

Then we brought Nathan home to Albany Med and when they tested his stool they didn't test for norovirus, they just assumed it was C. Diff again. When they realized it wasn't that they didn't do more testing they just called it a milk protein allergy and called it a day. He seemed OK for a couple days after bowel rest because his gut was happy with the rest. Then the diarrhea came back and we came to Boston where they tested for norovirus in his stool just a few days ago and he was positive.

The doctor said he doesn't still actively have norovirus he is just shedding it in his poop, his body is getting rid of it still. Since he had diarrhea for so long and how his gut is sick and weak from diarrhea for 7 weeks he isn't absorbing sugar the way he should be. Due to that he is on a formula that doesn't have fructose in it, it only has glucose in it. He will need to avoid fructose for a while, hopefully not forever. The doctor said his gut just needs a break and to rest for a while. While his gut is healing he will continue to have intermittent diarrhea but it will evnetually go away completley. He needs time to heal and gain some healthy, normal bacteria back in his gut but it's going to take some time - probably a few months. So now we have an answer for the diarrhea. But his blood sugar has been droping to the low 50's (it should be between 80-120) and no one seems to know why.

The endocrinologists came by yesterday and didn't have a great reason why it would be so low sometime. They put him on a schedule to check his sugar but he hasn't been on that for a full day yet. So yesterday we got some answers and some more questions. Hopefully the blood sugar gets figured out quickly and he can go home later this week.

A couple good days

2011-05-01T17:35:00.000-04:00

Yesterday Nathan got a visit from Grame and had a wonderful time with her. He is now starting to understand that when people visit they bring gifts and he loves the gifts. When we are this far from home and the visits are less frequent he also loves the visits. He and Grame read books and played with his new remote control car all day. He was asleep by 6 and slept through the night until 7am the next morning.

Also yesterday the doctors thought that maybe he had an intolerance to fructose - just an idea. They decided to cut it out of his diet and see how he did. He seemed to do OK yesterday and even had a normalish poop. That didn't last long.

Today he is back to diarrhea and for the second time, after bloodwork his blood sugar is low (50 the first time and 55 the second time). After his feeds his sugar returns to normal. So that is just another piece to add to the puzzle. Last I talked to the doctor was this morning and Nathan hadn't had diarrhea yet so we thought things were going good. I'll see what happens tomorrow when I see the team for rounds.

Grandpa and Grandma came for a visit today and brought Trevor with them. Nathan wasn't as excited to see Trevor but he was thrilled to see Grandpa and Grandma. Daddy also came and he's staying until tomorrow afternoon. Nathan seems to be doing OK today. He's not as energetic as he was yesterday but he was jumping on his bed this morning and running around a little.

He lost a little weight since yesterday, they weight him each morning since he is so underweight. The doctors seem pretty concerned with his weight, it seems like their biggest concern right now. I agree, he's still really skinny and needs to gain weight. Hopefully soon he'll start gaining.

Finally A Good Day

2011-04-29T21:38:00.001-04:00

I had a great idea today that would encourage the doctors to be a little more proactive in their diagnosing Nathan, I should have them come in each time Nathan goes to the bathroom to clean him up! I'm sure they would figure out quickly what was wrong with him if they were the ones cleaning him up 7 or 8 times a day.

We're still just sitting around all day not really doing much. Nathan's diarrhea is now really frequent and a water-like consistency but every time they send a sample the lab says its too thick and they can't run all the tests. So I have no idea how thin they need it but I don't ever want him to get there. The nurse was going to talk to the Dr. about that but I forgot to ask her what the doctor said. Nathan was actually in a pretty good mood for a little while today. He was up out of bed and running around the room. He kept going into the bathroom and laughing and then opening the door and jumping out at me. Then he layed on my bed for a while and told me he was going to sleep there and I could sleep in the chair.

He got a bath today and didn't really like it. He again told me that Trevor was the smelly, dirty one and he needed a bath not him. I told him he needed a bath since he's having visitors this weekend, he didn't see the need to be clean for them.

ORL finally came by, the attending GI doctor called himself, and said that Nathan is ready for surgery!!! Dr. N (ORL) said that he will talk to his secretary and she should be in touch with me about scheduling the surgery but we shouldn't expect it to be until July since it takes a while to coordinate the OR time and all the doctors who need to be there. He said it will only be about a 5 hour surgery with a couple weeks of recovery but after that Nathan's trach should be out. He said some kids panic once they get it removed and can't coordinate their breathing but he told me not to worry and we will cross that bridge when we get to it. So for now we just have to count down the days until mid-July!!

Nathan was laying in his bed today and we had a knock on the door and it was the unit secretary, he had a package for Nathan! We opened it up and it contained Cars books and Nathan could not have been any happier. He was thrilled to pieces with all his new books and one even had watercolor paints that we just had to use, he had a great time. It was nice to see him so happy today rather than just laying in bed all day.

Look at how happy he was, the box in the background was the one that was delivered today with his new cars books - he was so happy!!

So happy to be sitting on Mommy's bed - also known as a windowsill

He thought he was so funny, he told me he was going to sleep there!

New nurses

2011-04-28T22:34:00.000-04:00

I just had to write about our nurse tonight - I don't like her even a little. She is new and still training and has NO idea what it means to be a night nurse in peds. She comes in loud as ever while Nathan is sleeping. Then she talks to him to wake him up so she can tell him what she's going to do. I understand talking to him if he's already awake but don't wake him up on purpose, he's 3 and needs sleep.

Then she says "he has a poopy diaper, do you want me to change him" - no I think you should leave him in his poop all night, that sounds like a wonderful idea. Then he can wake up with diaper rash and just add that to his list of problems. After that she throws the diaper away in the bathroom garbage, now this is just me being picky, but I hate it in there since it will then smell up the whole bathroom. It doesn't do that in the garbage in the room since that garbage has a lid.

Then she has to change his sheets because his poop was everywhere (why did she even have to question changing him) and opens and then slams shut the dirty linen container. It's metal and loud and it's 10:30 at night - BE QUIET. I just asked her if she could be a little quieter, she told me she has a job to do. I think I'm going to talk to someone tomorrow. I hate her, but she's the first one since we've been here so I'd say it's not that bad.

Oh and my other complaint, she yells across the room to me. If you want to talk to me walk across the room to where I am sitting so you don't have to yell to me. Especially when you are yelling over my sick, formerly sleeping 3 year old.

The jury's still out

2011-04-28T06:46:00.000-04:00

Yesterday was a day of nothing. The doctors came around for rounds and really have no idea what might be wrong with Nathan. They had me sign consent forms so that they can get his records from Albany Med, including the biopsy slides that were done during his colonoscopy. The doctor said he wanted his own pathologist to look at them for a second opinion, I completley agreed with him. So now we are just waiting for all his records to get here and hope the doctors here find something that Albany missed.

Nathan is doing OK. He got a bath yesterday in the bathtub in our room, he wasn't thrilled but he needed it. He also got cute new trach ties that are blue and have little white stars on them. He is still staying in bed all day and watching movies or reading books. A couple coloring books and some crayons magically appeared yesterday (I'm assuming the child life specialist brought them in) so he is also coloring now. He had one normal poop and then it was right back to diarrhea. We were very sad because it leaked through his diaper and got on blankee. The nurses were so nice though, there is a washer on the first floor (we are on the 9th floor) and they took his blankee down and washed it for us.

Yesterday was a little difficult because he was still pretty dehydrated and they had a lot of trouble getting an IV into him to give him more fluids. They ended up using his g-tube to give him pedialite. Right when I got him all snuggled in for bed they came back to try to at least get the blood they needed to run some labs. After only 1 try this time the nurse was able to get it and the trauma didn't last long and he fell right to sleep.

Today we are hoping the doctors will have more answers for us about what this might be, yesterday they just had no idea at all. I'm also hoping to see Nathan's ORL doctor (his trach doctor) at some point so we can talk about scheduling surgery to remove it.

GI Floor

2011-04-26T16:59:00.000-04:00

Yesterday turned out to be a very long day for both Matt and Nathan. They spent a long time in the ER waiting for a bed to become available before they were finally admitted and put into a room. About midnight they were given a room, so it was a long day of sitting and waiting.

Today not much has happened. I came out this morning so that Matt could go to work this week. We are waiting to be moved to the GI floor, right now he is on a general in-patient floor. The GI team wants him on the GI floor, it's more appropriate to his needs. Right now they are waiting for a stool sample so they can run a bunch of tests, they are hoping if they feed him he will poop so they are also getting ready to feed him.

Nathan is in pretty good spirits. When I got here I had his big stuffed Mickey and he was so excited to see Mickey, I think he was more excited about that than about seeing me! He has just been laying in bed relaxing and watching movies all day. He still doesn't have a ton of energy but he's feeling better since he hasn't eaten in so long.

The doctor's have no idea what could be wrong with him. The only thing they are saying is they don't think this is a milk protein intolerance. The doctors here have no idea why that would even be suggested given his age and symptoms. They don't think this illness is food related at all, but they aren't sure what it could be. We don't have a great plan as of right now but hopefully that will all change once he gets onto the GI floor later today.

A new day, a new ER

2011-04-25T11:50:00.000-04:00

As I write this Matt is on his way to Boston to take Nathan to the ER there. Nathan is only getting sicker as the days go on. His diarrhea is getting worse and now he's throwing up also. He only wants to lay in bed all day and is back to having no energy. We were doing our best to stay on top of his fluid needs so I don't think his dehydration is as bad as it was last time but he is still dehydrated despite our best efforts.

Hopefully he gets admitted to the childrens hospital and can see his GI doctor. Really, I don't care if he sees his specific GI doctor, he just needs to see someone who can figure this out. We're all sick of the diarrhea. He's had it for about 6 weeks and it's really take a toll on him.

Trevor had a nice Easter, he was great during mass. He ate snacks and drank juice to keep quiet. He also played with Grame, Grandpa and Grandma. Then we went to Aunt Kathleen and Uncle David's house for dinner. Trevor had a great time there, it was a good food day for him - he ate green beans, cranberry sauce and mashed potatoes. Then he had some chocolate cake for dessert. He just loves food. Nathan and Matt stayed at home since Nathan wasn't feeling well.

All in all it's been a very difficult few weeks for our family. Matt and I are both really stressed out and we need a break from all the sickness. We just want Nathan to feel good again. Hopefully that will happen soon.

Slow day

2011-04-21T20:31:00.000-04:00

Not much to report today. Nathan and Trevor had a great day just sitting at home playing. I was hoping we would be able to go outside to play again but it was way too windy outside for Nathan so we had to stay inside. Max, Hannah and Aunt Lisa did come over for dinner tonight so at least the boys got to play with their cousins tonight. It was cute to see Hannah with Trevor, they love to poke at each other.

Trevor is eating more and more each day. He amazes me, he will eat absolutley anything. He even loves all his fruits and vegetables, I wish the same were true of me. Nathan still has no interest in eating. I'm working on trying to find coconut milk yogurt, or something that is COMPLETLEY dairy free. I want a yogurt-like snack for Nathan to eat for school, it can't have any milk protein in it.

We are waiting for the local GI doctor to call us about an appointment for next week. The Dr. had said he wants to see us early next week at the latest, the nurse there acted like 2 weeks from now is the same thing. I'm starting to think we should see him now and then take him to our regular GI doctor who we trust and see what he thinks.

I picked up picturs of the boys today. We got them taken a while ago but we just picked them up since we were away and then Nathan was in the hospital. I'm going to ask my mom to scan them and then I can upload them so everyone can see them. They're really cute, I love dressing the boys the same.

Wagon Ride

2011-04-20T21:02:00.000-04:00

Today was a pretty good day for us. Nathan was acting pretty good all day, he is still getting his strength back though. He was in a good mood all morning and then he decided at 11am that he was ready to go take a nap, so he did. Then Trevor didn't want to be left out and decided he was also ready for a nap.

Once the boys got up we went grocery shopping and Nathan walked the whole time in the grocery store. I know that doesn't sound like a big deal but it is for us. This is the most Nathan has walked in a long, long time. He's just been so sick lately he hasn't wanted to do anything but today he seemed like he's close to being back to his old self.

Nathan decided today that he wants to go to the circus with Grame and Geege so they are happily taking him on the 6th, it's already all he can talk about. He keeps talking about what animals he's going to see, he loves animals. Trevor pulled himself up today, it was only for a second and then he sat back down but he did it! He is so determined to get the cats sometimes, they are good motivation for doing new things.

We took the boys outside to play, it's the first time this year they have been outside to play. Trevor didn't know what to do and just sat there watching Nathan play. Nathan had a great time playing on his slide and with all his outside toys. Trevor needs to learn what to do outside. He just pulled his socks off and played with them. Then we went for a wagon ride, they both had a good time. At one point I looked at them both in the wagon and Nathan was rubbing Trevor's head, it was so cute. He loves his little brother.

Proud new owner...

2011-04-19T18:07:00.001-04:00

Sorry I haven't updated in a couple days, we've been busy. The doctors decided that Nathan's problem was simply a milk protein intolerance. His little body just doesn't like the protein in milk and he gets terrible diarrhea whenever he has it, that is why he lost so much weight with all that diarrhea. Now that he is on a milk free diet he is starting to gain weight again, for the first time in a month.

Today I picked up Matt and Nathan from the hospital once he was discharged. When I got to the hospital Matt and Nathan came walking down the stairs, it was so nice to see. Nathan looks good again, it's nice to see. He isn't back to normal but he is getting there. He is acting better than he has in a long time, he actually wants to get up and play.

The formula the doctors wanted to put Nathan on at night was going to be pretty expensive so we worked on his blended diet to make it so that Nathan will get all his calories during the day and wouldn't need to eat at night. Today Matt talked to the nutritionist at the hospital and she approved his new diet for him so he no longer needs to eat at night as long as he tolerates his new diet. We won't know for a couple days if he's going to tolerate it though so for now we just have to wait and see.

Trevor is very glad to be back at home. He was so excited to see his kitties when he got down on the floor. He went straight for them and I think Toggle missed him because Toggle let Trevor catch him. Trevor is also the proud new owner of TWO teeth. Yes, yes he got his second tooth and now has two teeth on the bottom. Today we fed him real food for dinner and he loved it, he even ate some peas and carrots and cleaned his plate. He loves food!

Since Nathan is on school vacation for the rest of the week I am hoping to take both boys to the museum or the planetarium this week, I think Nathan would really love either one. I just want to do something fun to make up for Nathan not having a great time on vacation.

Finally figured out pictures, here are a couple from vacation...

Events of Today

2011-04-16T20:18:00.000-04:00

Today Nathan was doing great. It was Teddy Bear Day in the cafeteria so I brought in his stuffed Mickey Mouse so he could go. As soon as I got into his room he signed "Mickey Mouse" and had a huge smile on his face. Then I handed it to him and he put Mickey on his head and giggled. Then he put Mickey on Daddy's head and laughed and covered his mouth while he did it. I haven't seen him like this in a long time, it was nice to see how happy he was.

Grandma, Grandpa and Aunt Katherine all came and we went down to the cafeteria. Nathan was overwhelmed with all the people there and we didn't stay long. We then took him outside, we weren't really prepared for the cold weather, and looked at the ambulance and helicopter. We showed Nathan where he was when he was in them and he liked them. He told us he was a little baby when he was in the helicopter, he remembers everything we tell him.

Then Grame came with Trevor. He actually liked seeing Trevor today, I think. Trevor loved Nathan's nurse today and put his arms out for him as soon as he saw him. The nice thing about being in peds is they all love kids so his nurse was more than happy to hold Trevor for a while. Then Trevor decided he was hungry and demanded food. Aunt Katherine fed him his dinner, he loves food.

All in all it was a pretty good day. Not much happened medically speaking. I want to stay until at least monday when I can talk to a nutritionist, I want to talk to them about his diet and see if we can rework so he gets all his calories during the day. He used to get Boost at night just for the calories and the new formula he is going to be on is going to be pretty expensive so i want to see if we can avoid it. Tonight is Daddy's night to sleep at home since he has to stay the next two nights, Mommy has to work 16 hours on Monday so won't be able to be here.

Nathan has learned how to operate his bed so he is now laying in bed laughing as he moves his bed. Up down, up down, up down - he's having a great time. It's nice to see him finally having a good time. Hopefully the milk protein allergy really is his problem and he is on the road to recovery.

Test Results

2011-04-16T08:22:00.000-04:00

Yesterday was a long day for us. It started very early, Nathan got a colonoscopy and an endoscopy so the GI doctor could look at his insides. She said they looked mostly fine, he has an ulcer in his esophagus which came as no suprise to us. She put him on carafate for his ulcer and that's about it.

The GI doctor seems to think Nathan has an intolerance to milk protein and that is the cause for all the diarrhea. So the only thing Nathan eats that has any milk protein in it is the Boost so she took him off Boost and put him on a different formula for nighttime. That happened at about 9am. At 9pm the nurses realized they hadn't ordered his new formula yet, so they tried to do it. Turns out they don't have the formula she had wanted Nathan on, it's nowhere in the whole hospital. So they are going to talk to nurtrition today to find a comprable one. Hopefully it actually gets done today.

Also, Nathan's DVD player had bene broken. For most people it might not be a big deal but when Nathan is sick all he wants to do it watch DVD's of Thomas and Cars. So yesterday Rob (he now work's with Vicki) came over and got it fixed for us! It took a few people looking at it, but it is fixed now. Rob also brought over a bag that had new toys in it for Nathan, the only time in the last few days I've been able to get him to smile was when I was going through the bag of new toys. He loved all his new things, he's such a spoiled boy.

Trevor came down to visit again. When Trevor got there Matt and I took him to the cafeteria for dinner while Grame stayed with Nathan. Nathan enjoys having all of Grame's attention and we liked spending time with just Trevor. Trevor was thrilled to pieces when Matt and I gave him real people food for dinner, he loves real food. I think he's ready to be done with baby food - he's getting so big.

One of these days I'm going to figure out how to add pictures to the blog so I can start doing that.

Today's news

2011-04-14T21:58:00.000-04:00

Well, not much happened today. Last night we attempted to feed Nathan. His doctors said he could eat earlier in the day but as soon as that happened he fell asleep and we didn't want to wake him up to feed him, so we waited. Then it was bedtime so we just skipped his blended diet feeds and went right to Boost. It didn't go great. He had diarrhea after he ate and feeds were stopped as quickly as they began.

He is going in tomorrow for a colonoscopy and biopsy, and an endoscopy. We won't know much until the results come back from them. Hopefully everything looks good and this is just a viral bug that he has and it just needs to work its way out on its own. He finally gave the doctors a stool sample and the results are still pending. The only results that are back is that he has some fat in his stool which means he isn't absorbing his food. That can be from a zillion different things so there is really no use speculating what might be wrong.

As frustrating as it is we won't know anything until the results from tomorrows tests are in. We still have at least a few more days in the hospital. They obviously won't release him until he can eat and not have diarrhea, that won't happen until we know what's wrong. The biopsy results will take almost a week to come back.

In other news his feeding tube is still leaking. We have a prescription for a new one, it will take the hospital at least a week to order and get one and we are hoping that if we fax it to apria then we will get it sooner. His belly is looking better, the wound care guy is happy with how much better his belly looks. Nathan didn't complain about his belly hurting as much today which was good.

Trevor is doing great with Grame and Geege, and Aunt Lisa. He loves having grandparents and his Aunt around to take care of him. He knows that at any sound he gets picked up so he's also getting spoiled. Today he came to visit us in the hospital, Nathan didn't like sharing the attention.

I just asked Nathan is he wanted me to cuddle in bed with him, he said no. Then he told me that I need to sit in the chair. I asked him if I could sleep, he said no. I asked him what I should do, he signed awake. I guess I'm supposed to stay awake all night and just look at him. He's pretty demanding for a 3 year old.

Waiting

2011-04-13T17:58:00.000-04:00

Today was a long day of nothing. In the morning the surgeon came in and decided that his feeding tube was in fact too big, it needed to be smaller. She ordered the smaller tube, it was going to take a few hours to get it from the warehouse. We waited. Then the regular doctor came in and decided that Nathan must have C. Diff - I decided she must be stupid. She realized her error and left. We waited. Matt came so I could finally take a shower. We waited for rounds. Rounds happened, nothing new was added, they decided Nathan could eat through his feeding tube even though it was still leaking. We waited some more. Geege visited and read books and watched movies with Nathan. We got a new room. Nathan had been in his own room because of the C. Diff but wonder of wonders there is another baby with C. Diff so now they have us in the same room, didn't want to waste precious room real estate to two kids with C. Diff. The surgeon came back and took out his old feeding tube and put in the smaller one, Nathan didn't even flinch. The leaking seems to be much better. Hopefully this will allow his belly to heal from all the leaking.

We saw the GI doctor finally. She didn't impress me much. She wants to get some bloodwork to check for celiac disease. She is going to send some stool samples to check for all sorts of things. We just need him to poop. Then on Friday they are going to scope him to look at his bowel to see if there are other things going on in there. Won't know much until then. Now we have to sit here and wait.

Here we are

2011-04-13T00:32:00.000-04:00

Well, it's happened again. I'm beginning to think this is Nathan's way to of telling me he doesn't enjoy beach vacations. Let me back up a little...

About a month ago Nathan got really sick, vomiting and diarrhea and lost a few pounds very quickly. For you and I that might not be so bad but for NPW it wasn't good and we went to the hospital. One night they simply rehydrated him and sent us back all, we were all sure I could handle it at home. A couple nights later they admitted him sure that I could no longer handle it at home as evidenced by his continued weight loss. I agreed that it was beyond me and we needed help. They, being the doctors, said he had C. Diff - an especially nasty bacteria that causes awful diarrhea in kids so they put him on Flagyl told us to keep him out of school for a few days and sent us home.

Thank god he was finally home and mostly back to himself. He was acting OK, still not up to par, but better than he had been in a couple weeks. He went back to school and Nurse Mary and his teacher said the same thing, he was still acting tired and was still having some diarrhea. So we took him to his pediatrician who gave us a few different things and were sent on our way. Thank god he was going to be OK, we were leaving for a 2 week vacation soon.

Then we left for vacation and Nathan was great. God into the car the morning we left and signed "TV on please, lightening movie" he was ready for the drive and so were we. Both boys were perfect in the car, I really mean it - Trevor never cried and Nathan just watched movies. We had a fun first day in Myrtle Beach, the second day was OK but all the adults got food poisoining. By the time we were all better Nathan's diarrhea was back full force.

He just wanted to lay in bed all day and do nothing. He didn't even want the TV on, he just wanted to lay silently in his room and sleep all day. By the time all is said and done he's lost almost 10lbs in just about a month. That's 1/3 of his total weight. He is like a skeleton, we can see every bone in his body. He has no energy for anything since he's so thin.

We left Myrtle Beach early to bring him home to the hospital. We drove 14 hours just for Albany Med, never knew I liked this hospital so much. Here we are, waiting to be admitted. The doctors agree, this might not be just C. Diff but they have no idea. It could be a complication from the C. Diff or it could just be an annoying case of C. Diff that just needs a 3rd course of antibiotics. Either way we're in for a few days and hopefully some more GI testing to rule out some other things to make sure this isn't something else.

Hopefully he gains weight. He doesn't have much weight left to lose.

Hospital

2011-03-08T05:18:00.000-05:00

Well it's been a while again. I can't seem to find the time to update lately. On Monday Nathan was supposed to have an appointment with his ORL doctor so we could talk about taking his trach out, that never happened. Nathan got sick over a week ago and has been sick ever since. He's lost 7lbs and has no energy for anything. So we took him to the ER yesterday and he was admitted to Peds so he could get rehydrated.

While he was in the ER they discovered that his sodium is pretty high, a result of the dehydration, so they are working to bring it down slowly. Also his right hand started swelling and turned red for no apparent reason. The doctors are just "watching it" which is really doctor code for doing nothing since they have no idea what happened to it in the first place.

Nathan has been getting fluids for quite a while now and still hasn't peed which just goes to show just how dehydrated he really was. Hopefully he will pee soon and will show us that he is on the mend. Right now I am listening to his roommate whine and cry while his parents try desperately to make him settle down. Nathan is being my perfect NICU baby and sleeping right through it.

While we were in the ER all day yesterday Chubby was at him with Aunt Lisa and had a wonderful time. When I called to check on him she told me "despite what he thought was going to happen, he's made it 10 minutes without eating and is doing fine" which is why I call him Chubby. It's good to know he's in good hands and is hopefully going to come visit tomorrow.

Help me reach my goal!Sponsor Me at March for Babies!

2011-02-18T21:18:00.001-05:00

Video

2011-01-20T20:21:00.000-05:00

Here is the video I made as a fundraiser for the March for Babies. Please, watch the video and then click on my March for Babies badge and donate anything you can, even $1 will help. Help me get to my goal of $1000 by May!!

And the verdict is....

2011-01-18T22:32:00.000-05:00

Tracheitis... that's right, I said it, he's sick. He being Nathan of course. Nathan has been to preschool for 9 days - 45 hours, and he got sick! At least he got sick on a snow day and didn't have to miss any school for his illness. Hopefully his nurses at school will help keep him healthy and realize that he is so used to being sick that it takes a lot to bring him down.

That being said, the day was awful. While I was at the doctors office the receptionist asked me if our insurance had changed, it had not. Then she told me that it was saying that our insurance was no longer valid which means the insurance wouldn't be paying for the visit. GREAT! Just what we need, a bill for a sick visit. Then we had to go to the pharmacy, we got away with *only* 3 prescriptions this illess, and that is only because we still have most of the nebulizer medications from the last time he was sick. Then Matt had to call the insurance company and they had no idea what was wrong... how do they not know. Then Matt asked if our policy numbers had changed at the beginning of the year, well of course they did - but why do we need a new card?!?!! So we got that all figured out, then I had to call Apria and give them all the new information so they would fill our order for medical supplies. Hopefully this innsurance thing doesn't screw that all up and we still get our order in time.

Trevor is doing wonderful and loves himself more than I thought possible. We just got a new toy for him from the attic, it includes a mirror and buttons to push that make the toy sing, Trevor loves it. He smiles at himself, he does his "bobblehead move" in the mirror - he moves hsi head from side to side like a bobblehead. It's adorable and makes me laugh. He thinks his toes are amazing and giggles at them all the time. He also started screeching, which to some may be annoying but after having a baby who made no noise it's a wonderful sound.

I'm anxiously waiting for our ORL appt. in March that will determine when Nathan will have surgery to get his trach out. I am terrified for that surgery, even 13 surgeries later it's something I will never get used to but this will be a good one. 47 more days until our appt. in March, gotta love a countdown!!

It's been a while

2011-01-15T17:51:00.000-05:00

Well I was awful at updating a few times a week. I was even worse at updating a few times a month. Looks like life got in the way and I didn't have time to update, go figure.

Nathan has been doing great. He started school and couldn't love it anymore if he tried. He runs around all day, I swear I think they put him on a treadmill, and by the time he gets home he's so tired he can't even move. Usually he goes to bed at 3pm and stays there until the next morning when it's time to get up and do it all over again. With him going to school I am realizing that my signing isn't as good as I would like it to be. There is a little boy in his class who is hearing but has deaf parents, he was signing to me the other morning and I had a hard time understanding him. I had Trevor with me and the other little boy was trying to tell me his mom is having a baby, I guess it's time to start looking into ASL classes.

Trevor is getting bigger by the second. He loves to eat, and blow raspberries while he's eating. He think's it's hysterical but he's the only one. The other night I had to clean my glasses because they were covered in baby food by the time he was done eating. Trevor is rolling all over the place and is desperate to be mobile so he can follow Nathan around better. I can't believe how easy a "normal" baby is to take care of. For anyone who ever think's it's hard: I dare you to take care of a very sick baby who has a trach and a feeding tube!

We are starting to get ready to go to Myrtle Beach in April with Matt's parents. I call our last trip there "Tour of the SC Hospitals" since Nathan was having problems with his feeding tube and we drove from hospital to hospital each day trying to get it fixed. Matt's Dad eventually went to the local firehouse to see where they take pediatric trauma's, assured them we weren't having an emergency, and got the closest (2 hours away) Childrens Hospital for us. Needless to say the vacation wasn't everything we wanted it to be. My one favorite memory is that everytime we said to Nathan "look at the waves" he would wave to them - it was cute. Hopefully this trip will be better, but I'm not looking forward to 12+ hours in the car with 2 kids.

I am also starting to get ready for Nathan's next surgery which will hopefully be in May, to remove his trach. I can't even begin to describe how life-changing that will be for the whole family. Hopefully it really does happen in May, sooner would be better. We go back to the Dr. in March and will hopefully know for sure when the surgery will be then.

Now I'm new to this whole blog thing so I'm going to try to figure out how to upload pictures but no promises! I also promise to try to update more often, especially when we get closer to surgery time. I decided that so many people liked our CaringBridge site that this blog would replace it. Thanks for checking in on us.
Laura

Hello Everyone

2010-08-20T22:15:00.000-04:00

Hi everyone! I decided to start this blog as a way to keep everyone, near and far, updated on all the things going on in the life of the Webster family. Here is a little history on my family to get you started:

Matt and I met 5 years ago at a bar in Albany, we started dating shortly after and have been together ever since. After a little more than a year of dating, and a week before leaving on our vacation to Las Vegas, we found out we were pregnant with Nathan. It was a HUGE shock; once the shock wore off we were thrilled to be expecting. The pregnancy was complicated from the start and at 20 weeks we knew things were taking a turn for the worse. They told us Nathan would need to go to the NICU after he was born but his stay would probably be a short one, a couple weeks at the most. To make a long story short, he spent the first 20 weeks of his life in the NICU. The first 17 weeks were spent at one hospital then he was transfered to another hospital where he was sent home on April 1, 2008 after 3 weeks. Nathan spent the majority of his first year of life in the hospital - he had 11 surgeries before his first birthday.

Matt and I got married in Las Vegas on November 11, 2008 and 2 days later we celebrated Nathan's first birthday! In the fall of 2009 we found out we were pregnant again, another boy. In June of 2010 we welcomed Trevor to our family. Nathan loves his little brother more than I ever though he would and Trevor loves to smile at his big brother.

Nathan has changed from a once very sick little boy to a strong, healthy almost 3 year old who loves to run and jump around. He loves life and even when he is in the hospital can find things to smile at. He has taught me so much about life and what is really important. Thanks for reading and check back, I'll try to update a few times a week with what's going on with the boys!