Brayden loves to be home.
He is still adjusting his days and nights. Angry-sleepy around 5:00 p.m. and awake around 3:30 a.m.
He is doing better controlling his own body temp without much assistance.
He still looks yellow. This is probably a result of his high bilirubin.
When Brayden was discharged his labs looked slightly better. His bilirubin was still high (actually got higher while in the ICU). His other liver numbers did get better (but Brayden's liver numbers have not been good for years due to all of the meds his has been on).
Actually most of his labs from the CBC to Chem 7 and more, are all off but his time in the ICU helped...leaving the hospital with almost all numbers trending in the right direction.
Honestly, we just do not know if some unknown virus is just running its course or this is the new state of things for his body.
But overall Brayden seems more comfortable and less "sick" behavior.
Brayden will be visiting his GI doctor next week, as well as having some repeat labs.
His neurologist, GI doctor and pediatrician have been in constant contact. We started with the Palliative Care (PANDA) Program. Through this program, additional nursing is sent to the home and any additional support we would need.