I wasn't planning on updating tonight because I was trying to keep my eyes pried open with toothpicks but I had a sudden burst of energy. Anyway, first of all, thank you as always for your continued prayers. The stories I continue to hear about people praying across the country just astound and humble us to the core.
Quinn had a big day yesterday (Monday). They removed the ventilator and she did great breathing on her own. She did have a few irregular heart rhythms but nothing crazy and pretty much expected after your heart has been cut into. Typically they would have removed it Sunday sometime but they were keeping her super sedated for those first 24 hours post op this time, so it took a little while for her to wake up and be ready for it. I was in the room when they did it and although I turned my head at some points, it was actually really kind of neat to watch her take her first breath. And she fought like heck when they were messing with her so I knew my little girl was coming back :)
Anyway, that pretty much exhausted her yesterday so she spent the remainder of the day sleeping. I left around 8:30 or 9:00ish to head to Katie's for the night. It is such a relief knowing we have a wonderful place to stay with wonderful people who I never feel like we are intruding on. Everyone should have a friend like those two. This morning, I woke up super early and headed back the hospital in hopes of catching rounds - of course, I just missed the surgical rounds but caught the general cardio rounds. I cannot speak highly enough of everyone on the 18th floor, from the attendings to residents to nurses to the cleaning staff --- they are all so amazing and I feel blessed to have Quinn in their care.
She had a fairly uneventful night. They were able to remove the ART line from her wrist, so now both of her hands are free from IV's (yay!), pulled the foley catheter and the rectal themometer (blech), and placed her in a regular crib again (the standard prison issue cribs from TCH :) ) So the wires/tubes she still has: central line in her neck (which will probably come out tonight), the two chest tubes, and an iv in her foot. The chest tubes are looking more and more likely to stay for a little bit longer. They are still pulling quite a bit of fluid away, especially from the left side. She's on a constant cycle of diuretics but may add a hit of Lasix tonight to see if they can pull some more fluid out. They want her to be "negative" and right now her output is "positive". I act like I know what I'm talking about but rest assured, I have no clue.
I just know they need to get out more than what they are getting --- so kind of off-handedly, the attending (who btw, did Quinn's anesthesia for the first sugery and has a nine year old daughter named Quinn as well!) - that given her history with these effusions, they may go ahead and drain them either tomorrow or the next day. That would include going under a local and then sedation, putting in another tube and seeing if they can't pull some extra fluid out of there. Obviously our first choice would be for the drugs to work, but if they don't, then let's get it out of there. It may buy us another couple of days on 18 which actually doesn't make me that sad. 15 is fine and we've had good care down there but it's a different world going from the one on one attention to a post-op baby being watched by one nurse covering 4 or 5 patients. And we are obviously more restricted on 15 as parents - leaving and all of that sort of thing. Not that we leave often, but it is nice to know you can run down and grab a coke without anyone giving you a dirty look. :)
So recovery time is still kind of unknown. We are taking it just one slow step at a time. Sometimes one hour at a time. I know both Matt and I feel beaten down, so I can't imagine how little Quinnie feels. I just ache for the day when we are beyond this and prayerfully we will get there soon. I miss my husband (I saw him for literally 10 minutes today for the first time since Sunday morning I think). And I miss seeing my little boy every morning --- my heart feels pulled in 2 different directions but I know right now that Quinn needs us more. Not that Ryan doesn't need us - but it's just her turn right now. Maybe one day that will reverse for a moment (but hopefully not with open-heart surgery, two is quite enough, thank you very much!)
So tomorrow we should know more about their plan about the extra drainage chest tube. I pray I just walk in and find a completely clear xray and we don't even have to worry about it. We have Quinnie's clothes packed and ready to go for 15 just in case.
And just a fun P.S. - when your daughter's surgeon is a HUGE Longhorn fan, not a smart idea to wear an A&M hat at the bedside. I assumed I would have missed seeing Dr. Fraser this morning or that he was at a conference, and of course, he walks in. Then he stopped and did a double-take on my hat and was like "what are you wearing???". I was still not quite awake yet so I'm looking down at my clothes and wondering what's wrong with my standard issue yoga pants - and then duh --- he usually sees me in my nice burnt orange cap in my dad's honor (and Dr. Fraser's) and for some reason I just threw on this other one today --- oops! But it was good to see him and he continues to be pleased that Quinn is on the right track, albeit a slow one.
Did I tell you that Q is a case-study for next month when the entire team meets? Yes ma'am, she is. Not exactly the goal we had in mind when we started all of this but she will be presented to learn more about perhaps why the sutures came undone or popped open, plus all of the other little blips she's had. I wish I could be a fly on the wall for that --- it's so interesting to be in rounds and hear what all they are spouting off about her condition. Makes me wish I was just a little smarter though :)
So we'll do our best to keep you posted, especially if we move to 15 soon. I am on for the next 24 so posting will be brief.
Thank you again for your prayers and I leave you with a few pictures :)
Look who's awake!
We must have accessories! Blame the blue paci on Daddy :)