Day Three

Surgery Day. I came over around 6:45, so that I could see Esa before his surgery, which they anticipated to be around 8. They let us hold him again, which was really, really wonderful.
There were a few doctors, including Esa's cardiologist, Dr. Su, whom we've grown to trust a lot, who wanted to let him have a little more time to get stronger before he had the surgery, so it was postponed for about two hours while they discussed what they wanted to do. That gave us more time to be with Esa beforehand and we were pretty grateful that they were all talking things over to really find the best plan for Esa.

In the end they all decided it would be the best for Esa to do the surgery then, with everything that he had going on and because it was during the day on a weekday when all of the surgeons, doctors, and nurses were there and at the top of their performance. If they waited they were afraid he could need an emergency surgery during the middle of the night or on the weekend, or worse, both, when only a skeleton crew is at the hospital.

Once again I was grateful to know beforehand about the TGA. When the surgeons and anesthesiologist came to talk to us, it was pretty emotional. Dr. Eckhauser was the surgeon and he sat down with us and explained every detail of the surgery to us including the risks, drawing us diagrams and answering all of our questions. He was so informative, but not in a heartless way. The anesthesiologist was really great, too. They gave us about 20 minutes to be alone with Esa and we just cried and held each other and his hand and foot and touched his head. Art gave him another blessing of comfort and we headed over to OR.

The rest of the day we just waited. I was supposed to be discharged that afternoon, but they let me stay until he was out of surgery, which was really nice, especially because that still meant I had meals and a place to rest. I was able to take a shower(for the first time since Tuesday-yikes) and our good friend Meg stopped by with food for Art. It was really good to see a familiar face. Also, Hyrum and Jude came to visit with my sister. Jude just sat and snuggled me for the short time we were there and Hyrum was snuggling Art. It broke my heart. It's really hard to be away from them, no matter where they are or how much fun they are having, but especially when the whole stay in the hospital happened so abruptly.

When we were waiting in the ICU waiting room to hear how things went with Esa there was a mom there with a brand new baby crying and my heart ached to be able to hear Esa cry and to be able to hold him and comfort him. I also remember thinking that we are so lucky. There are so many children with cancer and other physical, mental and heart problems that will last their whole lives long. Hopefully this is something we won't have to think about, except at his yearly check ups. We really are so very blessed to be in such a great hospital with a heart problem we knew about before he was born and that hopefully won't affect Esa very much after this first hard part is over.

During our wait we would get updates every hour and a half from one of the nurses in the OR telling us how things were going. During one of the updates we got a call saying they had finished everything but noticed something that they needed to fix so they were going back in to fix it. After the surgery Dr. Eckhauser was, once again, awesome at explaining everything and answering all of our questions. He took special care to explain why they had to go back in and fix something in Esa. Esa went on a bi-pass machine to allow blood to be pumped through his body while they worked on his heart. Everything went as planned. After they finish, they took him off the bi-pass machine and did everything except close his chest. Then they did an echocardiogram to check to make sure the hearts plumbing wasn't leaking anywhere, that Esa wasn't bleeding too much, and that the surgery looked good. When they did the scan they saw that his left pulmonary artery looked like it might have been kinked and his oxygen levels were lower than they should have been. During the initial operation, Dr. Eckhauser had noticed that his left pulmonary artery was abnormally short and he debated over whether he should do anything about it. Dr. Eckhauser and his colleague discussed it and decided it needed to be augmented. To augment his artery they detached part of it and patched it with some of his own tissue, making it a little longer and wider. After they did this his oxygen levels immediately went up. To do the second procedure, Esa had to be put back on the bi-pass machine.  The body doesn't like the plastic in the bi-pass machine, so the blood tries to clot around it. As a result they have to give blood thinners and because he had to go on it twice, they had to give him twice as much. Because of all the blood thinners, Esa was bleeding a lot, making it necessary to keep his chest open for a few days until the bleeding would go down.

It was pretty shocking to see little Esa with even more tubes and wires coming out of him. There were three big tubes draining his chest and lungs and one draining his bladder. He had 12 to 15 (they would periodically add more or take him off other ones) other smaller tubes with different medicines, two IVs, his ventilator, Oxygen monitors on the front of his head and on his hand and foot, lots of wires, a direct line to his heart in his neck and umbilical chord, and more that I'm probably forgetting. He also had a big bandage over his chest. But, honestly, he looked better than he had since he was born. His color was good, the swelling had actually gone down in his face(but increased in his neck and chest), and he was pretty calm because of all of the medication he was on. We stayed with him for most of the evening, but he was pretty sedated, so we just held his feet, hands, and head. We were so grateful that the surgery was successful and that the biggest part of everything they would be doing was over. He still would have weeks of recovery and getting him to breathe and eat and making sure everything looked good, but the hardest part, the biggest part, was over.

It was super late when we decided that we should probably go to bed. They have "sleep rooms" for the Pediatric ICU and Cardiac ICU, which are basically a small room with a twin bed and sometimes a night stand.  You have to get your name on a list, but we were able to get one for that night, which was great because there are only 6 rooms. They consider the condition that the child is in, the distance from your home, and then it's first come first served. Art stayed with Esa, sleeping on a love seat that converts into a bed, while I went to go get some sleep. I had to get up during the night to pump, so I came and visited Esa a couple of times and then Art came and slept for a couple of hours while they did the change of shifts which takes place two time daily between 7-8 am and pm for the new nurses to get caught up on the situations in the ICU.