Our 1st Hospital Experience

Wednesday morning started out perfectly normal. My alarm went off at 5:00 a.m. so I could get up and give Landon his Carnitine on time. I stopped on the way to his room to make him a bottle, like I do every morning. When I went into his room he was standing in his crib whining, which is very unusual. There was also this smell...not like a dirty diaper, it was a completely different smell that I justt couldn't figure out. So I changed his diaper, gave him his medicine, and then we sat in the recliner so he could fall back asleep since he was whining when I went in there. Well, he then started choking. I couldn't figure out why, he wasn't eating anything and had already swallowed his meds. So I sat him up and he stopped choking, and cuddled up with me. But, he just would not sit still...which is very unusual when he is as tired as he was. This was my first hint that something was wrong...other than the whining. So I decided to take him into our bed, maybe he would sleep better in there. Again, he just wouldn't lay still, and then it started. He began throwing up, all over me, all over our bed, and all over himself. When it finally stopped I whiped him off, changed his clothes, and then changed his diaper because he had pooped again. Well, he had major diarhea too. This is when we began to get worried...with his disorder he CAN'T get dehydrated and throwing up and having diarhea at the same time, can get very serious very quickly. So I tried to get him to take some pedialite...he refused. So I just sat him in my lap and covered him with a blanket, and he fell right asleep. After about 1/2 hour I took him back to his room and sat him in the chair with me. He woke up about an hour later, and I changed his diaper again, managed to get him to take some pedialite, which he promptly threw up 10 minutes later. I called his Pedi and they couldn't get us in until noon since they only had 1 doctor working that day. By the time we made our dr's appt Landon had thrown up 5 times, had diarhea 7-8 times, and only took around 8 ounces of fluid, all in 7 hours. I knew we were in trouble and there was a very strong possibility that he would be admitted. Our pedi checked him out, I told him everything that had happened, and he made the decision to admit him to the PICU. I was very worried and really trying not cry, even though our Pedi has seen me cry before when we were first going through everything with Landon. I called Scott, who was at work, and told him to meet us at the Hospital and gave him all the info. The Pedi then decided to check Landon's Blood Sugar..which is the important part, his blood sugar tells us how hydrated he is because his disorder presents and acts as Hypoglycemia. Well his blood sugar was 56, they do not want it below 75!

So we went over to the hospital, and they asked us questions. took all of his info, our info, etc. It took about an hour to an hour and a half to do all of this, and to meet with the doctor. Finally he was able to get his IV, I went with him because he would not let me put him down, or anyone else hold him. He was crying and fussing constantly at this point so I knew he was feeling just awful. To say getting his IV was awful, would be an understatement. They had to velcro him down to this board, to where only his arm that they were putting the IV in, was free and barely free at that. My job was to try and keep him distracted, and they had another really nice lady there to help me. She had all kinds of toys and stuff, but Landon was not having any of it. After getting his IV and drawing blood for labs, we went back to his room and he fell asleep on me. An hour later or so the Doctor came back and told us that his blood sugar was down to 48, which is why he was so fussy...his blood sugar was right about the level where most children can start seizing...can we say scary? So he let us know that we would be there at least until Friday...Great.

That night went pretty well. Around 10:30 p.m. they decided to move us to a room in the Pedi ward, and out of the PICU. The room was much different and not as nice, but at least we had a bathroom and a shower, and we were at the end of the hall so it was mostly quiet. We had great nurses, and a great Doctor. They had to come in every 2 hours and refill his IV fluids. He was on 60 mL of fluid every hour, mostly glucose but with lots of other stuff mixed in it. Thursday morning they came in at 4:30 a.m. to draw blood for that days labs...I had just got to sleep, ugh. He was feeling  a bit better though. He downed 2 packages of Graham Crackers, but was still refusing fluids..but we think this was because he was getting so much through his IV that his body knew it didn't need anymore. The nurses and doctors both told us that babies are very instinctual and they will not take fluids if they are already hydrated enough so they were not too worried about it. We just "hung" out in his room, took a few naps, and kept trying to get him to take more food, and maybe some fluids. He took a bottle the whole day, but it was a start. By the end of the day he was definately feeling better, and basically back to his normal self. So, Scott and I were very hopeful we could go home the next day.

Friday morning at 2:00 a.m. they woke us up to draw blood again for his labs for the day. We were able to go back to sleep, thankfully and Landon even slept in the hospital crib for a little bit. So I was able to get a little bit of time sleeping in the "sleeper" chair alone. Let me tell you this chair was impossible to sleep in. My neck and back are still sore. Oh, well. Our favorite nurse came in around 7:30 a.m. to check his IV site. His hand was very swollen and sore, so they had to take his IV out. They kept saying they were going to have to put it back in, in his other hand...this made me shudder, I did not want to put him or I through that again. So, I convinced them to let him try some time off of the IV and see how he did..since he was back to himself and feeling much better. The resident came in and told me there was no way Landon could stay off of it, he would need to drink 5-6 ounces every 2 hours...what baby does this? He also told me there was no way we were going home that day, etc. So I appealed my case to his actual Doctor and she agreed to keep him off of the IV until noon, when they would check his blood sugar again (they had been checking it every 4-6 hours for the last 2 days) at noon. If his sugar was below 80 at noon they would have to put his IV back in, I agreed. Landon ate some vanilla yogurt for breakfast, and had a few ounces out of his bottle! He then had more out of his bottle at 10:30 (normal time for a bottle), and ate some graham crackers! They checked his blood sugar at noon and it was 91!! I was so excited, they then agreed to check it again at 5:00 p.m. while leaving him off of the IV. If his sugar had not gone below 80 at 5:00 p.m. we could go home, woohoo! So Landon then ate a whole thing of applesauce, and some peaches for lunch. He also had another bottle around 3:00 p.m. (again a normal time for a bottle for him). Come 5:00 p.m. they checked his sugars, and it was still 91!! So we were cleared to go home! Scott and I were so excited. About this time nurses from all over the hospital were coming to the Pediatric ward to see the cute little red headed boy, it was so funny. They all said they were told they would know who he was as soon as they saw him..yeah that's right my son was famous all over the hospital! It was great and so Landon..he is such a ham and let them all hold him, and would walk up and down the hall way showing off for them! We finally were released around 6:15 and headed home!

We are doing well at home now. Landon and I are both excited to be sleeping in our beds again. He is back to being himself, and feels great. We are very thankful for our awesome Pedi, his staff, and the Doctor's and Nurses at the hospital. Everyone learned all about his disorder and how to treat him, and I am so thankful they were so willing to learn, and to help us and him as much as they possibly could. They were great about following his diet, and being supportive of us and what we were going through. Hopefully we will not ever have to go through this again. We have to follow up with the Pedi this week, and I am really praying they will not give us a glucose meter, but I think they will so we can check his blood sugars when he is sick and keep on top of them, so we can go to the hospital if we need to without having to make a stop at our Pedi's office first. We can call, and then he can call and get us admitted ASAP. We missed our Christmas Party at the Geneticist's office, but that is o.k. hopefully we can make it next year.

Landon in the hospital, this is when we were in the PICU. The diaper on his hand is covering his IV to try and help to deter him from pulling on it, or pulling it out all together.

Landon, very happy to be in the car on the way home from the hospital. He was so exhausted from the whole experience, as was I.