Cath Day

On Monday, May 14th, we went to the hospital around 7:30am for Aili to get her cardiac catheterization. We checked in at the Ford Surgery Center on the ground floor at the hospital and waited til they took us to the room where they prepare you to go to the operating room. Aili couldn't eat anything after 4:00 am so I was really worried that she was going to be really hungry and fussy once we got to the hospital. She was so good though! She slept while we waited. Then when she had to get out of her car seat she just said quietly on my lap sucking on her binky while we waited for her to be taken for the cath. We met the anesthesiologist and the other people that would work with her. We were told me would met the doctor who would be doing the cath a little later before he did the cath (but that never happened).

Finally it was ready to go get the cath and we had to walk over to the main hospital. So she quietly stayed in my arms til we got to the doors where we had to part ways. Then onc of the Fellows took her in her arms and we gave her kisses and told her we loved her, and they were on there way. Of course I cried. I don't like having me baby taken away to be put to sleep and operated on. The cath is definitely more simple that the heart surgery she would have in a couple days, but it is still invasive, and has it's risks. One of them being a blood clot and stroke which Chris was freaked out about.

We went back to the ground floor where the surgery waiting room is. By this time I wasn't crying, but sat down next to a mother that was. I asked her what surgery her child was getting. He was getting the exact surgery that Aili was going in for on Wednesday. He had TOF with pulmonary atresia also. It was great to be sitting next to someone who was going through basically the same thing. Even though there baby had the same thing as Aili his physiology was slightly different.

After a few hours Aili was done with her cath. Dr. Perry came and talk to us (the nurse warned us earlier that he is a man a few words, she was right). He told us it went great. They found one other MAPCA that they hadn't seen in her other cath. They also found that she had an abnormal coronary arteries. That isn't a problem, the surgeon just need to know that before going in for surgery. We then went upstairs to wait to go in to see her. They put her in the CVICU because her oxygen saturation levels were pretty low when they took the breathing tube out. So they put the breathing tube back in and they were watching her carefully. When they told us where her oxygen levels were at we thought they sounded pretty normal for her, but I guess they just were moving up, that's why they put the breathing tube back in.

Finally we went in to see her. It was really sad because she was starting to wake up from the anesthesia and wasn't very happy. She was thrashing her head back and forth and crying. And it's really sad when they cry with the breathing tube in because they can't really cry. They decided she was doing well enough to take the breathing tube back out, her oxygen levels is where they wanted them. I looked away while they did that.

Around that time a lady from Dr. Hanley's team came up to meet with us about the surgery. She explained in detail everything that they were going to do in the surgery. It was awesome. I had been waiting for someone to do this with us, who really knew what they were talking about. It was great. We asked lots of questions and she was really positive about the whole thing, and we felt really good after talking to her. She felt like there was a really good chance that they would be about to do the complete repair, which was really great. She told us about how they would be using cadaver materials to put into her heart, which I didn't know before. It's really crazy what they can do. Then we signed the consent form that says they can do her heart surgery.

They rest of the day we just spent with Aili. She wasn't very happy at first because she was starving. But they want to make sure she is doing well on her own after anesthesia before they can eat. We kept dipping her binky in sweeties and then switched to dipping it in breast milk to try to keep her calm. When you put it in her mouth she would start sucking vigorously for a minute, and calm down, then realize it wasn't what she wanted. It was so sad. Finally at around 3:00 they let me breastfeed her. That was just what she wanted! She was happy after that! She had been 11 hours without eating, poor thing. She didn't know why her mom was holding her but not feeding her.

That night I spent the night in a sleep room in the hospital so that I could be there to feed her during the night. The room was right by the electric doors that go into the CVICU. So it was really loud, and it was freezing. So I didn't sleep well at all. I woke up around 5:00 to go feed her for the second time, and she was having a hard time. She hadn't pooped since her cath, and was really bloated and in pain. They gave her some medicine to try to help her. All morning I was helping the nurse take care of her because she just was really uncomfortable. Around 7:00 she finally pooped and it was a disaster. It went everywhere. We had to change all of the blankets and clean all of her wires off. She even got it on the little board that was on her arm. But you could tell that she felt so much better.