Family Vacation

Family Vacation

Tuesday, May 31, 2011

Tuesday Test Day

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

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

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

Monday, May 30, 2011


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

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

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

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

Friday, May 27, 2011


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

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

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

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

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

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

Thursday, May 26, 2011

Still Waiting

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

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

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

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

Sunday, May 22, 2011

It's not a food allergy...

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

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

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

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

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

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

Friday, May 20, 2011

Back Again

Nathan is back in the hospital.

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

He stayed home from school on Tuesday to sleep.

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

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

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

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

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

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

Sunday, May 15, 2011

March for Babies

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

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

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

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

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

Before the walk

After the walk

Wednesday, May 11, 2011

Home Again

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

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

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

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

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

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

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

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

Thursday, May 5, 2011

Hopefully Soon

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

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

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

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

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

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

Tuesday, May 3, 2011

Questions and Answers

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

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

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

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

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

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

Sunday, May 1, 2011

A couple good days

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

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

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

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

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