Second verse, same as the first...
A little bit louder and a little bit worse. (That's from Henry VIII by Herman's Hermits for those of you who enjoy having oldies stuck in your head.)
So, we just keep adding to the number of doctors that Jay has seen in his short little life. We had a follow up appointment Friday morning at 9:30 a.m. with the surgeon at Duke. We fully expected that they would check his incision, remove the stitches where his drainage tube was, say he looks good & send us on our way. We thought we'd be back home by lunchtime. Not so much. Let's just say I'm writing this post from the hospital and we're expecting the Easter Bunny to visit us here on Sunday.
The night before his appointment (Thursday night) was horrendous for all of us. Jay had a screaming fit that lasted from about 6 p.m. until about 1 a.m. It was clear that he was hungry, but when he went to eat, he would get so exhausted that he could eat less than an ounce. (He had been eating 3-4 oz. per feeding in the prior days.) Then he'd fall asleep, and sleep for about 15 minutes. Then he'd wake up screaming and hungry and start the process over again. He never really would eat a full meal and he struggled to breathe even when he wasn't eating. Let me say that there is nothing scarier in the world than watching your child struggle to breathe, and seeing that every breath takes all the energy that he has.
So we discussed the problem with the nurse practioner today, and she was concerned that the tiring out was due to changes in his heart rather than the vocal cord paralysis. Apparently, his EKG looks different, and in some ways worse, than it did BEFORE surgery. That's not to say that the surgery didn't work, but that his heart may have had some additional damage during surgery or since then. Just to be sure that his aorta was still looking open & flowing freely, they did another echocardiogram. Unfortunately, he was moving around and they wanted more detail than they could get with him wriggling. So they wanted yet another echo, this time under sedation. But they really wanted to be certain that under sedation, he wasn't going to have any additional breathing problems. So, it's back to the PICU again.
He did great on echo #2 (this is probably his 7th in 2 weeks!) and woke up with no breathing issues and hungry. So the nurse fed him 3 oz and they sent him out of ICU & back up to a private room. Luckily, this time they kept him in ICU long enough for us to go home and get a change of clothes (and of course the laptop - our only lifeline to the outside world!).
He did great last night - eating like a champ and very minimal breathing issues. I know the doctors think we're crazy, but the struggles he had to breathe on Thursday night were really awful. And while I didn't ever want a return trip through this place, I'm glad they're checking out everything to make sure that he's okay. I just hope he starts gaining weight soon - He dropped from his birth weight of 10 lbs 4 oz to 9 lbs 13 and can't quite seem to make it back up over the 10 mark. Please think hungry thoughts for us!