I was near the hospital when Pui called me, saying that she had missed me last night. I had to ask her not to make me cry while I was driving - I too had a nearly sleepless night and missed her a lot.We were there for the cardiologist's meeting, and learned that the team was thinking of having the surgery next week. S
o we still don't know when it will be - it could be late this week if another baby gets sick and can't go to their scheduled slot, or it could mean that we have at least a week to wait. We will just have to wait and see. We did hear that the surgical group is currently thinking that the standard Norwood/Sano procedure would be appropriate, even though he has moderate tricuspid regurgitation.
o we still don't know when it will be - it could be late this week if another baby gets sick and can't go to their scheduled slot, or it could mean that we have at least a week to wait. We will just have to wait and see. We did hear that the surgical group is currently thinking that the standard Norwood/Sano procedure would be appropriate, even though he has moderate tricuspid regurgitation. His bilirubin rose a little, so he remains under the bilirubin lights. Also, his SATs (Oxygen Saturation levels, I believe) keep creeping up and so he's under the low oxygen tent today. He's gained 119 grams (4.2 oz), a 4% weight gain in 3 days. Everything else seems to be going well, and the we choose to be encouraged that the doctors aren't worried enough to schedule surgery as soon as possible. 
Pui and I did get a chance to touch him for about 40 minutes while the nurse was busy with other things. He really likes having something pushing on his head and his feet. The last picture is Daddy calming Pat. Well, Daddy's hand anyway.
He looks lovely and I am glad you have this time to get to know him before surgery. We waited 6 days for surgery and I confess I was climbing the walls by then. I think its because you can't start counting down recovery time to going home time until you are through surgery so the waiting feels like treading water.
ReplyDeleteIt is good that Pat is stable enough to wait but I am sure they will keep checking he is doing well. What is the issue with tricuspid regurg and the norwood? You are now becoming experts in a little corner of CHDs just like the rest of us!
Try and get some sleep even if you need to stay in a sleep room to relax better. It is not going to be easier to sleep during recovery!
Shannon
Hi Shannon!
ReplyDeleteAs I understand it, since he will only have the one atrial-ventricular valve, it's important it work well. Any regurgitation is simply that much more work his heart will have to do. Too much, and his heart won't be able to beat hard enough. What the options are if it's too much, I don't know. And I'm a little afraid to find out... I know it can ultimately lead to needing a heart transplant if it can't be fixed.
I hope it never gets there. We'll see how it goes. For now we are just trying to enjoy him as much as we can.
Rob