Around Christmas, Jacob just stopped tolerating his feeds. Every time he would get his feeds he would be in a ton of pain. So he wasn't getting anything to eat and no fluids. That caused Jacob to get very dehydrated. I have seen his dehydration symptoms so much that I can usually tell when its coming right before it starts to get bad. And I have noticed it a few days after Christmas. On the 29th, Jacob was very sick. He was lethargic, he was dizzy, his heart rate was up, and just not feeling good. So he stayed in bed most of the day. When it was time for bed, I was laying in there with him and he had a seizure. I had left to go tell Tom and started watching tv. Jacob came out again and said that he had another seizure and was slurring his speech and could not walk very straight. I got him back to bed and came back and was watching tv. About an hour later I hear a big bang. So I went to Jakes room and tried to open the door and I couldn't because he was in front of his door. I pushed it open and I tried to talk to him and to see what happened. I could not understand him at all. He was not talking in normal words. But what I did get out of him is that he got dizzy and passed out. I asked him why he was trying to get out of bed and he said he wasn't. He was confused and had no idea where he was. I got him back in to bed and went to bed myself. The next morning I expected him to feel better, but he wasn't. He was pretty much the same. So I called all of his doctors and they all told me to take him to the ER. I was about to take him and I got a knock at the door. I answered it, and it was the district nurse coming to do her 90 day check up. She saw him and said to take him to the ER ASAP. So that's what we did. When we got there, they took his sugar and it showed it was very low. So that's what they are saying caused the seizures and passing out. So they went to start an IV on him and they could not find a vein that would be good enough to give him fluids. They tried for an hour and a half and every time they would find a vein it would blow or just disappear. Finally they found one and they were able to get the IV started. They gave him a bolus of D50 which is sugar water, to get his sugars up. That worked, and then they gave him D10 fluids. We were in the ER for a LOOOONG time, when the doc came in and said that we needed to admit him for fluids because he was severely dehydrated.
We got admitted and talked to all the doctors. The main issue we had was Jacob stopped tolerating his feeds. So we wanted to start him on a new formula that would help him and start slow. We started at 10 Ml/hr and that gave him stomach pain right away. So they gave him his pain meds to make sure his stomach didn't hurt. It would take away the pain for a bit but not for the whole time it was supposed to. So they upped his formula rate by 3 every 4 hours until they got to 60. He had pain the whole time and they wouldn't really do anything other than give him pain meds. The Gi doc told me that we would just have to deal with the pain and there wasn't anything they could do. I talked to the dietitian and she thought we should change his formula. So we changed it to another kind and that did not give him any pain at all! It was amazing! So we decided to go with that formula and hopefully it helps him.
We are not quite sure why this all happened. His GI system just completely shut down and usually it goes back after some rest. But his has not and will not ever go back to normal. The disease that he has causes organ failure and we think this is what is happening to him.
Hopefully this will be the last of the hospital visits for a while. Since October we have been in the ER or hospital 8 times for a total of 32 days all together! I am so tired of the hospital, to say the least. We celebrated the New Year in the hospital. So it was a pretty crappy way to ring in the new year, for sure. My goal for the new year is to keep Jacob out of the hospital for at least 1 month in a row. So far January is out of there...I have high hopes for February.
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