Wednesday, October 8th
I woke the baby up at 7 am to feed him before he had to fast for four hours for the ultrasound that we had scheduled. We arrived at the hospital at 11 am and got checked in. Then we got called back to the ultrasound room. The tech (Brad) was great. He was really nice and helped us feel comfortable. Beckett had to lay there for about 45 minutes while we did the ultrasound of his liver, ducts, and gall bladder. He did amazing! Shawn just laid his hand on him and helped him keep a binky in and he did so well lying still. The tech was impressed. After the initial pictures were taken, the radiologist came in and looked at everything before they sent it over to Dr. Books (the liver specialist) office. We could hear the tech and radiologist talking but couldn't really understand everything. I thought I heard them say that they couldn't find his gallbladder at all. It was really scary not understanding what was going on. After they finished talking, we were done and were to head straight to Dr. Book's office. We took a quick pit stop so I could feed Beckett and then we headed over.
We got to her office, checked in and got Beckett undressed for measurements. Then came one of the most painful waits of my entire life. Because this was a last minute appt and there was no set time, just a head over when he's finished, we had to just wait for them to get to us. On the one hand it was super frustrating sitting there for over an hour but at the same time we were just so grateful to be able to get seen so quickly especially if this turned into something scary. We still had hopes that it was something quick and easy to take care of. Beckett was amazing. He just hung out and was as cute as ever.
Then one of Dr. Book's associates (Krishna) came in the room. We did a thorough history and he checked him out. Then he went and consulted with Dr. Book and shortly after that, they came in the room, along with Brooke who is the liver coordinator at Primary Children's. Dr. Book sat down, introduced herself to us and then it was straight to business. She said based on what they had seen so far she was fairly sure that Beckett did indeed have Biliary Atresia. She pulled up a chart and started to explain what that meant to us. Here is the basic idea. You have your liver. Coming out of the liver are a series of ducts that connect the liver to the intestines. This is how the liver drains the bile. If Beckett did have BA, then that meant that those ducts were either missing or severely damaged. Thus no drainage. The bile was just building up in his liver and that was causing the jaundice. It causes liver damage because the bile is toxic to just sit there. If that was the case then we would need a surgery called the Kasai. They would cut his small intestine and connect it directly to the liver, essentially bypassing the ducts. Then the part of the small intestine that connects to the stomach would be sewn back to the piece now connecting to the liver.
We were stunned. And overwhelmed. And confused. We asked questions about what that meant for his life. We learned that the surgery is just a band aid. If we don't do the surgery, he would die or need a transplant within the year. If we did the surgery then it buys us time. Time for him to get bigger and stronger. This would allow the pool of donors to be larger. We both were sobbing. It was the hardest thing I have ever had to process. Dr. Book was amazing. She said we needed to run further tests to confirm the diagnosis. She wanted us to be admitted to the hospital so that we could streamline the process since the surgery is time sensitive. They won't typically do the surgery after the baby is 90 days old because the success rate goes way down. So she wanted to jump on it. She reassured us that it was going to be ok and that they would take good care of us. She then turned us over to Brooke. She was amazing. She helped us get admitted to the hospital and told us that she would be there every step of the way through all the craziness. We were so overwhelmed but were so grateful for the help that we were receiving.
After the appointment, it took a little over an hour to get admitted to the hospital. We had to wait until a bed was ready for us. We ate some lunch, called our parents and cried a lot. Finally we were told that our room was ready and we could head up. It was late afternoon by the time we were admitted so the game plan for the rest of the day was to take a bunch of blood and also start an IV. It was hard watching them do the blood again, and again, and again but the IV was the worst. We asked if they could do it in his foot because he loves sucking on his hands. They tried one of his feet and it didn't work. So then they moved to his hand. Again it didn't work. Finally they tried his other foot and it worked. He just screamed and cried the whole time. And kicked. He kicked a lot and the nurses kept commenting on just how strong he was. All I could think of was how grateful I was that he was big and strong because if he needed surgery then he would need that strength.
He did really great. Even with the IV and the monitors that he was hooked up to, we could still pull him out and hold him. That was so nice to be close. We also blessed Beckett. We were told that surgery was imminent and didn't want to wait until after. I wanted him blessed before. So we had a few family members come up to the hospital and we were able to bless him. It was really special. I'll do another post on that later. That first night in the hospital, we slept horribly. I got ONE hour of sleep. The rest of the time was spent praying, crying and thinking. I was trying to process just how much this was going to change our lives. And how scared I was for the surgery.
Thursday October 9th
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.
We slept much better that night. I got at least 5-6 hours. Once about 5 am hit, we were up.
Friday October 10th
Because they did a liver biopsy, it was going to take a day or two before we would get those results. They told us that we would be able to be released for the weekend and then we would come back on Monday for the surgery. When the doctors did their rounds, they came and talked with us again. They said that so far based on the x-ray, echo and the initial results that they could see with the biopsy, that things were pointing to Biliary Atresia. The chest x-ray showed no butterflying of the discs in the spine. The heart murmur is a typical newborn murmur that a lot of kids have. And the liver looks fairly damaged but not so bad that it absolutely pointed to BA. But again nothing was confirmed. Dr. Book still wanted the eye exam to further rule out Alagille's.
The eye doctor came and did a quick glance and said that his eyes looked good. Then he put drops in to dilate the eyes and used these horrible metal clamps to keep his eyelids open to be able to see in the back of the eye. His eyes showed no markers of Alagille's.
After that it was just a waiting game. Waiting to be discharged. Then the computers went down so they couldn't print the discharge papers. Finally late that afternoon, we were good to go! They told us that they would call Sunday to inform us of what time we would need to be at the hospital for the surgery. I was just so relieved to be able to go home for the weekend and spend some "normal" time with my family. I missed my girls so badly.
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