Family Vacation

Family Vacation

Friday, April 29, 2011

Finally A Good Day

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

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

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

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

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

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

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

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

Thursday, April 28, 2011

New nurses

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

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

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

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

The jury's still out

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

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

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

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

Tuesday, April 26, 2011

GI Floor

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

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

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

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

Monday, April 25, 2011

A new day, a new ER

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

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

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

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

Thursday, April 21, 2011

Slow day

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

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

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

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

Wednesday, April 20, 2011

Wagon Ride

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

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

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

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

Tuesday, April 19, 2011

Proud new owner...

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

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

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

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

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

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

Saturday, April 16, 2011

Events of Today

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

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

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

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

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

Test Results

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

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

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

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

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

Thursday, April 14, 2011

Today's news

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

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

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

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

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

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

Wednesday, April 13, 2011


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

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

Here we are

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

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

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

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

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

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

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