Thursday, June 9, 2011

Day four

Well I'd better make a quick update. My mom has been sleeping in the room with Lucy at night and I've been staying in the Ronald McDonald House. Last night there were a lot of critical cases and we live so close so I decided to go home. When I got back this morning my mom said that she'd done great through the night and started initiating breathing so they were going to get her off the ventilator today and maybe get her moved to the floor by tomorrow. Well the doctors just came and rounded. In these teaching hospitals it's such a huge group that comes by. Maybe 10 doctors, residents and nurse practitioners. Anyway the intensive care doctor said she was having some problems with her lungs and wasn't really doing as great as we'd been led to believe. She's still OK but things are just moving slow. He said maybe off the ventilator tomorrow but more likely on Saturday or Sunday. She's starting to move a lot more because they are weaning her off her happy drugs. She hasn't made any sounds or opened her eyes yet but she will respond to touch or sound. She restrained so she can pull out the ventilator but she's been fighting it a little. I'm ready to go home but really I'm ok with them moving slow. Last time we were here she was sent home too early and screamed for a week straight once we got home. Her oxygen sats aren't as high as I thought they'd be. I guess I had unrealistic expectations but they are barely better than they were pre surgery and she's on oxygen now. I asked the docs today about it. They said they didn't really know where they were going to level out at. They might not get better until the collateral arteries are taken care of. Hercollateralsare those arteries that aren't supposed to be there. Often when a baby has pulmonaryatresia, arteries that aren't supposed to be there will form to compensate. Lucy's collateralswere the reason she did so well after she was born. If she hadn't had them she would've had surgery immediately after birth. Now Lucy doesn't really need them anymore and they may become problematic. Luckily for her they can go into the cath lab and coil them off instead of opening her back up. She's already had three cardiac caths but even though she still undergoesanesthesia, it's much less invasive than surgery.
They did some crazy stuff to her heart. Lucy's biggest problem with her heart was her pulmonary stenosis (that is the narrowing of her pulmonary artery). Hers was so narrowed that a lot of doctors just refer to it as pulmonary atresia(that's where the artery is completely closed off or missing. They were planning on removing the narrowed section of her pulmonary artery and replace it with a human donors. When they got in there they were able to save her artery and place the human donors next to it. The grandpas have been referring to it as a double barreled shotgun. The idea is that hopefully her real artery will keep growing so that she doesn't need replacements her whole life.
Wow, if you made it through all of that you're a trooper.


Tom/Tabitha said...

So much to deal with! Hugs and prayers for you and yours. I hope she keeps doing better.

Christin Foscarini said...

slow and steady wins the race, right? well im glad she is doing well, even if it may not have been as well as we had thought. still praying for lulu!