So I know it has been a couple of weeks since I updated, and a lot has happened and is still happening. We got discharged last thursday the 15th only to be readmitted on tuesday the 20th.
They sent him home with intentions to send him to Cincinnati Childrens hospital outpatient and let them direct admit him so that he can see their motility specialists and intestinal failure team. He was stable when we left, no fevers and feeling pretty good. We got to spend a good weekend at home, he wasn't himself but we know he has been through a lot in the past month so to be expected. His legs have gotten really weak and wobbly and he has begun to complain about leg pains.
Sunday morning he woke up and was very shaky so his pediatrician had us get some bloodwork at the local hospital to check his CBC and some blood cultures. We were thinking it could be blood sugar issues but by the time we checked it was fine. Monday, his nurse came and drew labs again and this time his blood sugar was low, 60 so we have ordered a glucometer to help keep track of them. This could be all related to the TPN but who knows.
Then on Tuesday afternoon when he woke up from his nap, he had a temp of 103.5 rectally....really not good so off the the pediatrician again :( We got there and he couldn't find any easy answers so he called the GI on call at Brenners and they decided he could stay home and wait for test results. So we had to go back to the local hospital and get labs drawn again. This time they ordered a new test called procalcitonin which shows elevated when bacteria sepsis is a high probability
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An hour later the pediatrician called and said it was really elevated so he has to be admitted. So off to Brenner's again. We got checked in and to our room around 8pm tuesday night. And sure enough the next day, his cultures came back positive and he also has tested positive for rhinovirus. So poor baby, he can't catch a break.
His nap that led to his fever
Not himself, but glad we had a 4 day home vacation
He is feeling better now, no more postive blood cultures but still on IV antibiotics for 10 days. And we finally made some progress with moving forward to Cincinnati. After a long email to his primary GI doctor about how nothing has been done and nobody seems to follow anyone elses plans, we made progress. Cincinnati has all of his records and are reviewing them and coming up with their plan of action.
He is going to be seeing their motility specialist, Dr Kaul and their intestinal rehab/transplant specialist, Dr Koccoshis. Hopefully they will be able to come up with some plan for Zach. The GI on call this morning informed that he should be transferring up there next week. The financial person here at Brenner's is working on his insurance information and we just have to wait for Cincy to say we are ready for him. I am not sure if we will be going on the helicopter or what, but that should be interesting.
And we are still waiting on immunology labs and genetic labs to all come back, maybe they will give us some insight to why he is having these issues.
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