Dec 25

Dec 25, 2013

We got moved again in the hospital.  Now we are in the largest isolation room in the hospital.  It has two sinks, it's own toilet, a shower, XBOX, and tons of room.  The view overlooks the intersection of MLK Drive and 52nd Street.  There is also lots of storage.  I guess you get the nicest place in the hospital the longer you stay here.

The doctor got a hold of the surgeon.  It turns out he will be in on Dec 27 and maybe even Dec. 26.  Depending on the surgeon's recommendation, we could either be discharged Dec 27 or we could be here another 2 weeks.  If he wants Rokus to return for surgery at the end of January, we would leave now then do the G. Tube placement and bowel reconstruction together.  If he prefers G. Tube placement separately, Rokus could go into another surgery as soon as Friday, then we are here another 5-7 days before Rokie gets released.

The GI specialist feels comfortable sending Rokus home even with his current weight and mildly low albumin levels.  The netrologist feels comfortable with him going home as long as we have consistent lab results even if they are slightly outside the target ranges.  The hospitalist pediatrician is still not comfortable with weight and albumin though.  Then, we are waiting on the surgeon's opinion regarding surgery.

In summary,
1.  We will always deal with renal failure and will likely require continuous blood pressure medicine.
2.  His bowel reconstruction depends on the surgeon.
3.  His esophagus is restricted and the GI team and surgeon need to work together.