I was woken up by the nurse just before 4 am so that I could feed Beckett before he had to fast for four hours until his echocardiogram which was supposedly scheduled at 8 am. Beckett was also born with a slight heart murmur so they needed to make sure it wasn’t anything significant in case he needed surgery. They needed the whole picture before we moved forward. So 8 am came and went. Beckett was getting pretty hungry and pretty soon our day nurse (Her name was Melissa and she was phenomenal. The first nurse who I felt was advocating for us.) came in and asked if we were getting a liver biopsy. I told her that as far as we knew that was up in the air. She replied, “Well he doesn’t need to be fasting for the echo so if they aren’t doing the biopsy there is absolutely no reason why he can’t eat.” She left to go check on that. Soon she came back and said that we were on the schedule for a liver biopsy around noon. I was so mad. Now we had passed the point of the four hours before the procedure but he could have eaten at 8 am!!! So here he was, starving and I couldn’t do anything about it. Around 10:30, we were told that they decided to combine the echo and the liver biopsy together to make it easier on Beckett. I was grateful for that but they pushed it back to 12:30/1:00. Poor baby was so hungry.
While we were waiting, the liver doctors did rounds. While they were with us, they mentioned that the combo of the liver issues and the heart murmur could suggest another condition called Alagille Syndrome. If that was the case then there wouldn’t be surgery. So not only did they want to do the biopsy and echo, they also ordered a chest x-ray and an eye exam. There are physical markers that they can look for to confirm Alagille’s. The discs in the spine can look like butterflies. And there are eye defects that can visibly be seen. I started looking up Alagille’s and while I loved the idea of no surgery right now, the syndrome comes with lots of issues, some developmental that I didn’t want Beckett going through. And they end up needing transplants as well. It was hard hoping that the test indicated that he had BA and needed surgery.
Around 12:30 they came and got us to take us down to get the echo/biopsy. We had to sign consent for them to sedate him. So hard to talk to anesthesiologists about sedating your child. We passed him off to the doctors. They told us to go to the surgical waiting room and they would let us know when he was finished. It would be just over an hour and we would be able to go to him as he was coming out of sedation. We walked by the surgical waiting area and it was so depressing so we went downstairs and had Shawn’s brother bring us some lunch. We just chatted for a bit and then Shawn’s phone rang. He got up thinking they were telling us that Beckett was finished. It was Dr. Book. “Where are you?” Shawn replied, “At the cafe at the front of the hospital.” Dr Book, “Stay there. I’m sending a surgeon to talk to you.” Click. Panic ensues. With terror filled eyes, Shawn came over and got me. All I could think was that something went wrong and that’s why the surgeon was coming to talk to us. After a minute we saw a man who had to be the surgeon. He was carrying lots of papers. My heart sank. He introduced himself to us and we all sat down. After 2-3 minutes of talking to him, we realized that this was just a consult in case Becks did need the surgery. We were just getting it out of the way to streamline everything. You can’t even imagine the relief I felt that it wasn’t an emergency.
Dr. Eric Scaife was going to do the surgery. He sat us down and drew diagrams and went into detail about what he was going to look for and do. He told us that he would start with a dye study. He would inject dye into the gallbladder and if the dye went up into the liver then he would stop immediately because that means that the ducts are functioning. If the dye doesn’t go into the liver then he would continue with the Kasai. He also gave us some statistics on the surgery. He broke it basically into thirds. 30% of the time, the surgery doesn’t work at all. We would need to go straight to a transplant. 30% of the time, it works and then doesn’t work. That means it could be 2 or 5 or 10 years before it stops working and we go to transplant. 30% of the time it works. Realistically that just means that it’s a long time before it stops working and he needs a transplant. (Don’t ask about the other 10%, we aren’t sure what that is.) After he explained the surgery, he gave us a consent form to sign if we felt comfortable about moving forward. It’s weird having to sign something like that knowing that if you don’t sign, your child could die.
After talking with Dr. Scaife, we got the call that Beckett was ready. We went and saw him. He was pretty out of it but was doing well considering. We got him back to the room and I was finally allowed to feed him. It had been almost 12 hours!! We hung out in our room for awhile until it was time to go down and get the x-ray done. Once that was finished, we were done for the day because we missed the eye doctor while Beckett was getting the echo/biopsy.
I should mention that at this point we had dealt with lots of nurses and doctors. We had great experiences with pretty much all of them. They took great care of us. We especially became close with one of the tech nurses named Alysha. She was amazing! She would actually talk with us and love on Beckett and I now consider her a great friend.
Written by: Kimber