Year End Wrap Up

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

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...

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

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

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...

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

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

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

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

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

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

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

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

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

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

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

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

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...

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

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

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

Time for Today

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Father's Day

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

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.