We are now approaching one of the longest times that we have been home with Beckett since he was diagnosed with Biliary Atresia. It feels amazing. Even though things are going well, it’s still been so incredibly stressful. About a month ago, we headed into the hospital for what we thought would be a two day stay. A belly draining and recovery and then home again. I wanted to get it over with because Shawn was headed out of the country and I didn’t know how to juggle being with the girls and Beckett, at home and at the hospital. It was just too much. So we headed in before Shawn left. Little did we know that our two day stay would turn into a two week stay.
We drained his belly (the scariest one so far) but we just couldn’t find a good balance of diuretics to keep his belly small for any significant length of time. It was so frustrating. Our situation has always been a little different because his belly fluid came from two different places rather than just one. Usually with these BA kids, they have ascites (abdomenal fluid) because their liver is so scarred. Blood can’t flow properly and so fluid leaks from their organs and their veins. This is part of Beckett’s problem. But the other issue stems from his surgery 5 months ago. During the surgery, his lymphatic system was damaged. So he had fatty fluid leaking from that. That was a huge part of the problem at the beginning. It’s the reason I had to stop nursing and he was placed on a special formula. But as we were in the hospital this last time, our doctor was concerned because this should have healed by now. It’s been five months and it should have taken a couple of weeks. She theorized that because of the massive fluctuations in his belly size, his lymphatic system couldn’t heal properly and was still leaking.
At that point, the decision was made to place Beckett on the transplant list, this time for real. At this same time our doctor wanted to try one last medication to see what effect, if any, it would have on the fluid issue. It was a medication that she had never used before in this situation. She had used it for other purposes but never for this. So we had no idea what would happen. We never were worried that something scary would happen to Becks, we just didn’t know if it would make any sort of difference. The medication works like a blood pressure med, except with your organs. It also slows everything down including liver function and digestion. I was ok with trying it but became a little concerned when I learned that it was a shot, three times a day. And it burns going in. We tried it a couple times but Becks didn’t tolerate it well, he cried and screamed. That’s just not like him. He can handle things much better than most people can so I knew it wasn’t a good fit. Plus it wasn’t doing anything. Then came our very last option. Same medication but in IV form. He had an IV placed and was on this medicine 24/7. For four days. So many tubes and monitors.
During these four days, although things were pretty slow with Beckett, they were crazy for Shawn and I. Because he was going to be listed for sure, our lives went into go mode. Beckett had an echocardiogram to check out exactly what his heart is like. We had a 2.5 hour interview with a social worker followed by a 3 hour teaching class all about liver transplants, statistics, things to expect etc. We also had a visit from a pharmacy tech who spoke to us for about an hour all about the meds that we can expect him to be on after transplant. So much information crammed into such a short time frame. I had a permanent migraine for several days. It was so much to take in and process.
At this same time, Beckett was placed on strict fluid restrictions. They upped his TPN and lipids to 21 hours a day, and he could have 3 oz by mouth a day. We had to strictly observe how much water we were flushing his NG (feeding) tube with. Every little mL was carefully counted and added up each day. We had moments where his belly grew too much and we had to start all over with which diuretics to use and at what dose. And then he would dry out, his mouth would get dry and his tongue would feel like sandpaper. He would gag and choke. Every morning they took labs to monitor his kidney function and check his electrolytes. After four days, he was taken off the IV medication but we stayed at the hospital for just over a week after that. And every day was the same. Labs. Monitor. Adjust meds and fluids. He had fussy nights and other nights he slept great. It was just so up and down each day.
Finally we got the ok to go home. His belly was staying stable. Dr. Book wanted an ultrasound before we left. She believed that the reason that his belly was staying small was that his blood was finding new paths to get where it needed to go. And she was right. I think the IV med also helped heal him a little but we saw significant changes in his blood flow. Right now it’s a good thing for him. There’s less pressure and so he isn’t leaking as much fluid into his abdomen. It could cause problems in the future. We will see.
Life since we’ve been home these past two and a half weeks has been good and stressful. He’s been dry almost the whole time. I should rephrase. His mouth has been dry. Every time we do labs, his kidneys are great and he is peeing fine and crying tears. So we know that he is not dehydrated but for some reason his mouth is so dry. We keep getting it wet with water or giving him wet towels or sponges to suck on. It helps and he loves it but he started waking up every hour during the night due to being dry and uncomfortable. It’s been exhausting. He also has gone on a feeding strike. I’ve been struggling to get 3 oz in him a day. And this last weekend, he completely has refused to eat anything. So for the time being, he is completely tube fed. Throughout the day we periodically push food through his tube. A couple mL’s every few minutes. We try to get 10-15 mL’s in every hour. If we push more than that, he vomits. It’s such a delicate balance. And it’s hard to watch.
We are still waiting for him to be listed. Waiting on insurance. It’s been a stress since the beginning because our insurance plan doesn’t cover transplants at Primary Children’s Hospital. We worked something out a few months ago but now that it is time to get an actual contract in place it is taking time. We had a few days a week ago where we were told that we would have to move or risk paying hundreds of thousands of dollars at Primary’s. It’s been so incredibly scary thinking of what we may have to do to save our baby’s life. But at my last appointment, insurance wanted us to do a few more things, more blood work, and an EKG so I’m crossing my fingers that they are continuing to work through a contract and we will be able to stay here and stay together as a family.
Beckett continues to be amazing. He has been rolling over like crazy and will even stay on his belly for about a minute now! That’s so amazing to me because he hates pressure on his belly. He won’t sit up or play in toys that put pressure on his tummy. So for him to be staying on his belly is a miracle. He is constantly smiling even though I know he doesn’t feel good. We are also starting to get some real weight on him. His cheeks are filling out and I’m starting to see that his wrists are getting fatter. It’s good to see him look a little healthier. Hurry up and wait. That’s our life lately. We rush to find a solution to an issue and then the next minute time stands still and we are left waiting. Waiting on insurance. Waiting for the call to come that he is listed. And ultimately, waiting for the day when our lives completely change and Beckett gets his second chance at life.
One response to “Hurry Up and Wait”
Love that boy. Love him on his belly. Love his hair coming back in. Love his fat wrists. You constantly stay on my mind and in my prayers. ❤ mucho love!