Nurse Marie, Granny, and Neat Neat sat in the waiting room with us and I was able to update the blog once with Marie's computer. The surgery started around 10 am. Trent and I were distracted for about an hour after that talking with a research nurse practitioner. During Claire's surgery, part of her thymus had to be removed to get to her heart (this is normal in heart surgeries for babies). They asked us if they could use Claire's removed thymus for research to help find better ways to do thymus transplants in babies with complete Di George syndrome. These babies have absolutely no immune system so these transplants are very important since the thymus creates the immune system. So we agreed to let them do research on the removed portion of her thymus. Otherwise they would just throw it away. It hit home since the doctors had originally thought Claire could have the Di George Syndrome. So hopefully she helped another baby or two today.
Trent and I went down for lunch in the cafeteria around noon and even visited the gift shop. Daddy wanted to get him some Duke bumper stickers for his truck - I guess this State family is becoming a State and Duke family! So we got back to the waiting room thinking Granny, Neat Neat, and Marie would take their lunch turn and they said "did you get the message?" We had no idea what they were talking about. But the NP had come out around 12:45 and said they were done with surgery and that at 1:08 that she was off the bypass machine! So we all headed down to the PCICU to wait for the surgeon's update and to see Claire. While Neat Neat was out in the hall making phone calls, she saw Claire being transported in!
The surgeon came in and said Claire did great! He also said he wished all TOF repairs were as good as Claire's. That was great news! The even better news was that he did not have to cut open the valve portion of her pulmonary artery. This is the part that has the "curtains" in it. They did shave off some of the curtains to open it up that way. But they didn't have to split it open and patch it. This is really good meaning that it greatly diminishes the probability of another surgery in her late teens early twenties. It doesn't completely remove that risk, but it brings it way, way down! Yay! The surgeon also had to create a PFO in Claire's heart which sounded like a little passage way to relieve pressure in her heart. This should close up eventually if she does not use it. Everyone is born with one and they close up at birth. But the surgeon didn't want her heart to put pressure on her liver, so he made this PFO. I haven't had time to Google it yet to see exactly what it is.
We are now trying to learn all the new medical terminology. It's much different than the ICN terms. We are totally lost. But we will try!
Claire started waking up around 6 pm. She had several visitors including some of her cardiologists, the surgeon, a nurse who introduced herself as one of Super Dude's nurses, and Amanda and Colby. With Claire waking up, you can see the confusion and pain in her little face. So after a long day, I am sad to say that this momma just couldn't handle seeing her like that for long. I have held it together quite well for myself today. But seeing her struggle was too much. So we left her in the hands of the good PCICU nurses to get her extubated hopefully tonight. They plan to remove her dressing tomorrow so we will get to see that. The drainage tube will stay in for a while and so will the temporary pacemaker wires and IVs. I thought she had a lot of wires and tubes in ICN, but we were fooled. She has crazy wires!
I just called to check on her and didn't really understand what the nurse said except that her CVP pressures were a little high (pressure in the top of her heart measured by the IV in her neck) and that they were "pacing her" and that they wanted her "rate" higher (maybe heart rate??). And that she is breathing over the ventilator and they hope to do a blood gas lab around 10 and if that's ok, then try to extubate her.
It's all very overwhelming. The prayers have totally made this surgery possible. Thank you for each and every one of them. We are forever grateful.
On a lighter note - most of you know that Claire's nursery theme is farm animals. You also may know that most of her nursery stuff is the How Now Brown Cow theme. So tonight the nurses handed me this card and said I needed to keep it for Claire. I started looking over it because I had no idea what it was. I started reading the back and it said she would receive a permanent card in the mail with a serial number, model number, and the surgeon's name. I was thinking, "why would she have this? She didn't get a pacemaker did she????"
So I turned it over and read the front - "Bovine Pericardial Patch" with the serial number, model number, implant date, surgeon, and patient name. This means our child has a cow patch in her heart. It is a piece of cow that closes the 2 ventricles (the hole in her heart). Bovine = cow. So she will have a permanent cow patch card to always carry in her wallet! She is now a true "cowgirl at heart" - literally (sounds like a very appropriate title for Claire's blog!!!). So needless to say the How Now Brown Cow theme is PERFECT for our little girl!
|our family before surgery|
|Claire in her hospital gown|
|Can you see Claire in the tangle of wires?|
|So many medicines|