What we thought would be an exciting week back at home, took a turn on Monday night. Joey started re-accumulating fluid in his abdomen, at a rather rapid rate.
On Tuesday morning, it was confirmed by ultrasound that his abdomen had refilled with ascites. Given that Joey had been on a low-fat formula diet for about a week, it wasn’t thought to be the chylous ascites (fatty fluid that leaks from a damaged lymphatic system, which can happen during surgeries), which is what brought us in almost four weeks ago. Aside from the ascites, his liver enzyme numbers were escalating again as well. So the leading theory was that a compressed blood vessel near his liver was causing the ascites, which continued to compress the vessel, which was then driving up the liver enzyme numbers.
By Wednesday, Joey was in a lot of discomfort. So to provide him much needed relief, and to gain a better understanding of the type of ascites, our doctor performed a paracentesis “tap”(draining of the fluid with a syringe) in the afternoon. Shortly after, Joey had a CT scan to get a better look at his vasculature, and to help inform some decisions about additional procedures to take place in the later half of the week to address the ascites and compressed vessel. By the end of the day, discussions were taking place about a new drain being placed, another liver biopsy, a venogram to learn more about the flow/pressure of the vessels, and a potential dilation of his compressed vessel. Diuretics and medication were provided to him to help keep his vasculature hydrated, while helping his body remove the access fluid via urine output.
Side note: Joey turned 6 months old on Wednesday! He also tried solids for the first time. We were provided the choice of pureed carrots or bananas... we went with bananas! Overall, we think he enjoyed them!
The drain, biopsy, and venogram were scheduled for Friday morning. So Thursday was spent trying to keep Joey comfortable. As the day went on, it was decided that they would hold on the liver biopsy, and see how he progressed from the other procedures before doing something so invasive. The fluid drained on Wednesday indicated that the ascites was still primarily made up of fat, so they started thinking that there was likely some severe damage to his lymphatics, on top of a compressed vessel, and they were somehow exacerbating each other. By the late afternoon, Joey's belly had refilled again, despite all of the diuretics and medications to help keep his fluid input and output stable, so the doctor performed another tap to keep a little more comfortable.
By Friday morning, Joey had filled up again, and was the most distended and uncomfortable we have ever seen him. His procedure, which occurred two hours late, went okay. They ended up dilating his compressed vessel, and added a drain to the right side of his belly. During his procedure, we moved back to the PICU. Stabilizing the input/output of the fluids is a very delicate balance, and in Joey’s case, has required very close monitoring. Because of this, the doctor felt he’d get the more attentive care he needed in the PICU, as he continued to recover from this fluid issue.
Because of the pressure from the fluid build up, his kidneys and liver took a bit of a beating. When the new attending came into service on yesterday, we were told that if Joey were an adult, he would not likely recover from the damage that has occurred. He drained a decent bit of fluid yesterday, but last night he stopped putting out fluid. Even though his belly continued to grow in size. While this drain didn’t seem to be clogged like the last one (if you recall, he had some drain issues a week or so ago), it was clear that it wasn’t working properly. Because the fluid was draining, he also started having difficulty breathing and was placed on oxygen.
That brings us to today… This afternoon, he went to have his drain assessed. We were told he’d likely get another one on the other side of his abdomen, since that is where all of the fluid seemed to be pooling according an ultrasound this morning. He came back from the procedure intubated (which we were expecting), with only one drain (which we were not expecting). The drain was replaced with a larger one, and re-positioned closer to the center of his abdomen. Since then, the team has been working to get his fluids stable. The priority for the next 24 hours is to try to get him extubated.
But just as importantly as the extubation in the next 24 hours, we are waiting to see how his liver enzyme and kidney numbers are looking. We know there has been some level of damage to them from the fluid build up, but we won’t know the severity of the damage for another day or so. Our doctors seem confident that any damage to the kidneys would self-repair. Their main concern is that the transplanted liver might not recover. In which case, Joey would need another liver transplant. We are praying it doesn’t come to that, again. Especially because Joey has actually responded very well to his transplanted liver. It just seems to be severe damage to his lymphatics that is causing all of these issues at this point.
This week has been extremely physically and emotionally exhausting. Every day has been worse. The sudden onset and severity of Joey’s issues continue to leave us in a state of disarray. We are trying our best to stay optimistic about the next couple of days, and hoping the damage to his organs isn’t irreparable. But I would be lying if I said we aren’t worried about how this could play out.
Please continue to keep Joey in your thoughts and prayers. He is a fighter, but he’ll need all the strength he can muster if he has to go another few rounds.
With love, The Moschellas
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