Saturday, August 25, 2012

Day +140 Still in the Hospital

I was hoping we'd have Jacob home by now, but Thursday afternoon he started having really bad incontinence. I think I changed 25 diapers yesterday. Josh is with him today and it sounds like he's doing about the same. They had introduced clear liquids back into his diet, but with this new symptom, decided to put him back on 100% gut rest.  Jacob had a gut ct scan today and will have an endoscopy next week. Hopefully the problem can be identified so we can get him feeling better. I hope it's not gvhd, because I don't want him back on steroids. That is what causes pneumatosis, which by the way, looked better in Jacob's Wednesday X-ray. Jacob is still in good spirits and looks well despite the setbacks.  All the other tests that have been run so far haven't turned up anything to explain his symptoms.  All his infectious cultures remain negative (except for rhino virus... aka the common cold, which he picked up in the hospital... most likely from a nurse, since I can hear them coughing throughout the day.... argh!), his whole blood chimerism came back 90% donor, which doesn't mean a whole lot to us because we have nothing to compare it to.  We are awaiting the sorted chimerism results which were sent up to Seattle.  Those results will be more significant since we have past results to compare them to.  His bone marrow aspiration preliminary findings are that the marrow is producing cells just like it should.  No specific markers have been identified that would suggest an intolerance to his tacrolimus (immunosuppressant).  They switched his antibiotic with another one, to see if he was having problems with that.  Still no change.  The only stone left unturned is the GVHD issue, which will be answered with the results of his scope next week.

Jacob having some play dough fun with Grandpa Taylor and Aunt Mackenzy

1 comment:

Wendy said...

He looks so cute and happy in these pictures -what a trooper! And even though it's no fun to have him back in the hospital, I'm glad you are close to home and you and Josh can take turns sometimes and Jacob can have so many family visitors.