May 31st 2016- Jaxson was admitted to the hospital because his monthly lab results showed low sodium. We ended up going to the hospital by our house because we thought it was an easy fix. Anyway, they got it normalized & sent us home a week later. Labs were drawn again a few days after we got home, and those showed low sodium again. This happened every week until the first week in July. In one week, out the next… Let me stop there for a minute and post something happy. Jaxson was scheduled to be in my brothers wedding on June 21st. This just so happened to fall on the day that he was getting discharged from a sodium related admission. We were unsure if he would even make it to the wedding, or if he would still be in the hospital. The wedding started at 5, Jaxson was discharged at 2:30 and we made it to the venue by 3:30 just in time for him to get dressed & get the feel of the wagon he was being pulled in. The wedding was beautiful and I’m so glad Jaxson got to be a part of it!

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Unfortunately, this happiness was short lived as he was back in the hospital the following week for the same issue. Finally, the first week of July, they seemed to have got it figured out as we were sent home and didn’t return the following week.

Sadly, this too was short lived. July 16th, Jaxson woke up with a bloody diaper- I called 911 hoping they would transport us to the children’s hospital as I felt he wasn’t stable enough for me to make the 45 minute drive myself. But unfortunately they too decided he wasn’t stable enough to make that drive either so we were off to the hospital closest to our house… The crappy hospital where no one knows how to do their job & specialty medical care is definitely NOT their strong point. So they did all the normal lab draws, and vitals and the ER Doctor came in and informed me that he would be admitted to the general floor. Since he was stable enough to not have to be admitted to the ICU, I decided to try my luck one more time and asked if we could be transported to the children’s hospital. I was going to do everything in my power to not  have to stay at this hospital. I mean besides them being a crappy hospital, I felt way More comfortable with him being at the hospital that all his specialists work at. It only made sense… So, to my surprise she said yes and in no time we were on our way to the better hospital. Here, he was admitted to the ICU… There he would have been admitted to the general floor… Look at them, making better decisions already 😉 anyway, he got settled in his room, I got a room at the Ronald McDonald house across the street and was called up early morning the next day (Sunday July 17th) to sign a consent for a blood transfusion because he lost so much blood from the GI bleed. He was very uncomfortable, and inconsolable which I don’t blame him. The rest of the day was slow, as he has no procedures scheduled. Monday July 18th, when I got there in the morning he was fussy and inconsolable again… Being very combative. Hitting me, scratching me, throwing himself back when I picked him up, hitting himself. He hadn’t slept well last night, so I think his attitude was a mixture of tiredness and pain. The nurse gave him Tylenol and that helped him settle down enough for me to be able to pat his back and put him to sleep. He got another blood transfusion as well as some plasma because his clotting levels were low.

At noon he was taken down for an endoscopy, and the results from that showed multiple ulcers in his colon. This explains obviously the GI bleed, but also the low sodium issues and feeding issues. His GI Doctor thought it was best to contact the transplant team in Pittsburgh in hopes to bump him up on the transplant list (which got accomplished by the end of the day.) and possibly transfer him there while he awaits transplant- I don’t think this is happening any time in the near future. When he got back from the endoscopy he fell asleep and stayed asleep for quite awhile. Which is good because he desperately needed rest.

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