Sleep Day in the RCNIC

So, Mr. Jaime had an "Eh" day. He spent just about the entire day sleeping. When he wasn't sleeping, he was coughing and vomiting up mucus. Oddly enough, Jaime's respiratory panel came back negative. Most of his "cold" symptoms we can relate to teething, Jaime's is getting two teeth. They haven't popped out yet, but there are two very swollen areas. We used to joke that he'd get his first tooth in the RCNIC...the crazy thing is that may actually happen!
I met with Hematology early this morning and we discussed some of Jaime's bleeding issues and most recent nose bleeds. We talked about running a series of tests that include many genetic and platelet issues. We are trying to rule out everything on Jaime...aside from the hemophilia. They are talking about some different options to control (and prevent additional) bleeding during surgery and post-op. I don't know if any of you have ever had bleeding studies, but ironically enough, they require a lot of blood to be drawn...and when it's done on a little guy it gets hairy. Jaime is still very pale and now, kind of listless. He's not eating all that well either. When rounds came and talked about all of the blood tests that needed to be done (the hematology work up, pre-op and nutritional labs), I told them that they better have blood on hand to transfuse. Jaime just can't handle all of the blood draws. This is pretty typical for him, I'm guessing that's why he's so sleepy. We only had about 20 minutes of good awake time with him today. Side bar...if you're willing and able, please donate blood, it helps little ones like Jaime! (He thanks you, we do, too!!!)
Other things discussed in rounds were his "cold/teething" symptoms. This MAY post-pone surgery. Right now they are looking at taking him to the OR either Thursday or Friday. If the cough/congestion continues, I told them that I don't want him to go to the OR, they probably wouldn't take him anyway. I worry about him being intubated and getting extra junk in his lungs. From what I heard, Jaime's most recent x-ray without barium looked pretty good...there was only minimal bowel up in his chest cavity. All this means is that the bowel keeps moving up and down...this totally explains why there are times that Jaime looks really good and times when he is in respiratory distress. What is still a mystery and will remain a mystery until he's in the OR is how in the world Jaime's bowels got up behind his liver. The way he was "put back together" like Humpty Dumpty in his first surgery, was not typical. He has absolutely no diaphragm on the right side, so when the patch was put in, it was placed and attached over Jaime's rib cage. Prior to that, the surgeon placed Jaime's liver in such a way to "plug" the hole that couldn't be repaired even by the patch. So, how the bowel got past the liver, well, like I said...that remains to be seen. What I do know is that the surgeon is back in town and extremely upset that this happened. I wonder how they will repair him to try and prevent re-herniation in the future.
Anyway, that's about all to report for today. Titi and I are just hanging out in Jaime's room for a little bit. We don't have a TV at RMH and I was hoping Jaime would wake up for me to feed him one last bottle. So far, no such luck!
Well, I'm off...here are some pics from our 20 minute playtime while getting Jaime ready for bed just after he was weighed...by the way, Jaime lost more weight. :-( There was some talk of increasing his calories and dropping the NG again...we'll see if that happens. They don't like "skinny" babies around here, especially ones who have surgery pending.

Jaime snuggling with his nurse Liz after she weighed him...and after he threw up all over her...sorry Liz!

Jaime showing off how well he can stand!

Now he's sitting up...OK so he can't do either of these things on his own, but he sure looks cute in his jail suit! :-)

Jaime with his buddy, Elmo.

Jaime in his current state....Zzzzz!!!!

Hoping to post a better report tomorrow...