Tuesday update

The last couple of days have been tough for Theo.  On the bright side, Whitney was discharged on Monday and looks great.  She is still in the early stages of the recovery process, but she is making good progress.

Theo's recovery is also in the very early stages.  We were pleased to see him moved out of the pediatric

ICU today to a progressive unit.  But, like we were told to expect, his recovery has had a few setbacks.  The good news: His kidney seems to be working great.  His lab results continue to look as good as ever.  The bad news: The rest of his body is not cooperating.  His belly is still massive (he looks 8 months pregnant), his bowels have not started working again, and he is absolutely miserable.  Oh, and to top it all off, he has a UTI.  Poor guy.



Despite the efforts of the doctors to pull fluid out of his body, Theo is retaining fluid, particularly in his belly.  His reflux and vomiting have been brutal, but improved this afternoon after stopping one of his pain medications.  We had a bit of a scare on Sunday night when his g-tube (his feeding tube, which is anchored in his stomach by a balloon) completely popped out, balloon intact, due to the immense pressure built up.  After the g-tube popped out, blood started pouring out of his incision.  I don't think Nick has ever been so scared in his life.  Fortunately, the g-tube was replaced quickly by a resident and the surgeons took a look at the oozing and said it was normal.  But, it just highlighted for us how much pressure is built up inside of him, and how delicate he is right now.

It's been really hard to watch Theo the last two days.  We have not seen even a glimpse of his normal self.  He has barely slept, and just keeps his eyes open, not moving, and barely even crying or whimpering.  Not a fun sight to watch.  I think I'd feel better if he were vocal and miserable, as opposed to resigned and miserable.

We're hoping for significant progress tomorrow.  We hope that some of the fluid will be pulled out of him so that his belly will not be so distended and he can rest comfortably.  We're ready to see him eat (he hasn't been fed since last Wednesday, but started some IV nutrition tonight), we're ready to see him smile, and we're ready to see him move around.

It's easy to get caught up in all the little things at the hospital, and forget the bigger picture.  I need to remind myself to focus on the fact that he survived birth despite an initially poor outlook, he did so well (relatively speaking) in his first 17 months on dialysis, and he now has a functioning kidney.  I know he'll pull through this.  I trust that he has been brought this far for a reason.

Thank you for your prayers.  We have received so much encouragement.  Hoping tomorrow that we can share good news!

Wonder Whit and Super Theo (courtesy of one of my coworkers)