Claire was pretty sedated all day. Anytime she opened her eyes, she was in pain and would try to cry. Tears would come out and her little eyes would squint, but no sound could come out because of the breathing tube. It's a very hard thing to watch. And to know how much pain this little girl has to be in. I haven't measured the incision, but it pretty much is a frowny face that spans her whole abdomen. It goes from down near her right hip up over her belly button and down on the left side. Plus I keep telling myself the child basically had 4 surgeries in one yesterday - a liver resection, 2 hernia repairs, and an appendectomy.
So all day they nurse (a GREAT nurse) did physical therapy with Claire's chest which includes basically beating on her chest to break up the mucus in her lungs. This has to hurt as Claire's incision is not too far from her chest. But we understand it has to be done or her lungs could get worse. She also received "muco mist" which is basically breathing treatments along with albuterol (sp?). They started out doing them every 8 hours and then increased them to every 6 hours with albuterol every 3 hours. The RT pulled a lot of mucus out of the breathing tube this morning and continued to get lots of fluid out throughout the day.
They got an xray of Claire's lungs around lunch time and it was not any better than the previous one even though they had removed a lot of fluid. So the breathing treatments and chest PT continued. Claire kept waking up in pain, so she kept getting pain meds. She still has all of her 4 IVs and the drainage tube as well as a NG tube that is draining everything from her belly through her nose. She did get the catheter removed today!
The nurse only had Claire as her patient today so that was nice. It's that way tonight too. She spent a lot of time explaining things to us today like third spacing. Claire is very swollen due to a 5-6 hour surgery, having lots of fluids pumped into her body, and having liver/abdominal surgery. From what we understand, most of the fluid she has is in "third spaces" which is not helped by giving diuretics. So until her veins absorb some of the swelling, she cannot get it out. So they are working on that too.
Although I thought the heart surgery was going to be the hardest on Claire, I was wrong. This surgery has been much harder on her. With her heart surgery, she was off the vent that night. She came off a lot of pain meds quickly. We saw the liver surgeon this morning and she said that she removed about 75-85% of Claire's liver. That's a lot! Also with the appendectomy, she should pass her appendix in her stool. That is going to be weird.
They did do an ultrasound of Claire's chest today to rull out a fluid pocket (she didn't have one) but we did get to see her "new" liver. It looked so different without all of those cysts!!!
I was so tired last night that I don't think I said how thankful we were to Claire's liver surgeon. She has been phenominal. She is excellent! I told her yesterday after the surgery I would hug her but that might not be appropriate!
Oh, and a roommate of Claire from the PCICU was on the show "The Talk" today. Her name is Korah and she is waiting for a heart transplant. I will try to post a link to the show here. Korah was there in February when Claire was there for her heart surgery and she is still there waiting. http://www.cbs.com/daytime/the_talk/video/?play=true&pid=JjijFeSbwzMsAByu185i71Z3_5JNQZlv
The nurse from today stayed late tonight and called me when we were on the way to Julie's. She told me that the extubation went well and that Claire was resting well. They will keep watching her tonight and drawing labs and maybe do another xray to make sure her lungs stay open. She may even get to eat tonight or tomorrow morning depending on how the night goes. She has a really good nurse tonight too, so that is very comforting. Today was hard for me to see Claire is so much pain.
Thank you again for all of the continued thoughts and prayers. We are so incredibly grateful. Please continue them as Claire really needs them. We are going to try to get some rest tonight. We will see!
Love,
The Scott Family
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