Just a quick recap to start:
Joey was readmitted last Friday, the 9th, after his lab work from the previous day at clinic showed an elevation is his liver enzymes. These can be high from an infection, rejection of the new liver, vascular issues, etc. Ultrasound had ruled out any vascular issues and he wasn’t displaying any signs of infection. So the doctors started him on some steroids in case he was experiencing mild rejection, and continued to monitor his enzyme levels over the next couple of days in case additional intervention or testing was needed to get to the root cause.
Catching you up from there:
On Sunday his numbers were still trending upwards, so Monday he had a liver biopsy. This biopsy could tell if we were looking at rejection, and how severe, as well as whether any infection was present. On Tuesday we got the results back that everything looked great! No signs of rejection (which could be because the steroids addressed it already), and no sign of infection. But it still begged the question why his liver enzymes were still trending upwards. Our doctor said it could be because of a biliary obstruction (he had a small stent placed in his bile duct during the transplant surgery to keep it open. The duct is so small and with the sutures, the scar tissue can end up closing the duct up. There was a thought this stent could have moved or gotten stuck somewhere it shouldn’t be), or it could just be his body adjusting to his new liver. Either way, with the information we had at the time, we ruled out anything serious enough to keep us at the hospital. We were discharged later on Tuesday night, and were told to expect a CT scan (to get a better picture of any biliary issues) and continued outpatient testing at our clinic appointment on Thursday.
We were very excited to get to go home, and it was very unexpected. Chris and I for sure thought we’d be spending a romantic Valentine’s Day in the hospital 😂 I have never packed bags quicker… we even made it home in time to have a home-cooked dinner!
Wednesday we had a sleepy morning, but after we got our day started, Joey was fussy. For hours straight. Which is not usual for him. He was kind of grunting/moaning when he was breathing, like he was overly full. But he wasn’t nursing well, so we thought maybe it was all the meds and just getting acclimated back at home to our schedule. After a few hours of the fussiness, we called the transplant clinic. They asked us a series of questions and told us to give him a dose of Tylenol to see if it made him more comfortable. If his fussiness got worse, we were to go to the ED, but as it stood they were comfortable waiting to see us the next morning for our scheduled appointment.
We gave Joey Tylenol and within two minutes, and right after I put him on my lap, he threw up. He was in much better spirits after, he even smiled, and then took a nice long nap afterwards. But throughout the night the fussiness returned. We decided it wasn’t worse than before, so we didn’t go to the ED, but it was a rough night for the three of us… no one slept well.
Thursday morning we headed to our appointment, and by then his belly was quite full looking, and quite hard. “Distended” as we have now learned the term. Our NP and the doctor were concerned this could be from internal bleeding from the biopsy. This can happen shortly after a biopsy, or present several days later if it’s a slower kind of leak. His liver enzymes levels were even higher, some almost doubled, as well. So, we were readmitted again. This way, our CT scan could be expedited and we’d already be in the hospital to treat whatever was going on it if was on the more serious side.
Getting readmitted is kind of a pain, as you can probably imagine. The protocols require more lab work, x-rays to ensure his PICC is still positioned properly, physical exams by everyone and their mother it seems… it’s exhausting and after the night we had, we were not prepared for it.
Another ultrasound was done and confirmed that there was fluid built up in his abdomen. To the point where it was putting pressure on vessels in his liver… Not good. The CT scan confirmed it was ascites (a build up of fluid in the abdomen), not blood, and that the stent was still in the correct place in his bile duct, so likely not the biliary issue the doctor was originally concerned about. Phew!
To help remove some of the ascites, Joey has been receiving different treatments which help his body reabsorb some of the fluid, and essentially pee it out. This was started Thursday night and had mild success in terms of his distention, but seemed to have helped bring his enzyme levels down. Yesterday afternoon, the doctor did a paracentesis procedure (removal of fluid in the abdomen with a needle and syringe) to run diagnostics on the fluid and to remove some of the pressure for Joey. In total, she removed 14 ounces, and could have kept going but left some behind out of caution. The relief this brought Joey was immediate, he was visibly so much more comfortable, and even started to fall asleep during the procedure (I’m sure the morphine helped too).
The fluid that was drawn, at first glance, indicated something called chylous ascites. It’s essentially a collection of fatty fluid when there’s a disruption to the lymphatic system (which happens during operations like a liver transplant). I understood more of the nitty gritty as our doctor explained it with helpful metaphors, but now I can’t remember any of it (we should be better about taking notes…). The diagnostic tests have confirmed that a lot of fat was present in the sample, so everything is pointing to chylous ascites at this time. There was barely any bile or blood present, so that’s good. Overall, it’s a good diagnosis, and the easiest/least invasive to treat… the others would have required additional surgery. This diagnosis is interesting though, as it usually would present much sooner after surgery. We are all thinking because he wasn’t feeding well until recently, that caused the delay. Joey continues to be an enigma here, never following any of the normal signs for a diagnosis. I think it’s exciting to some degree for the medical team, but he’s definitely giving them a run for their money.
The treatment for this kind of ascites would normally require low-fat formula and time to heal his lymphatic system. But, our doctor heading into this week wants to be a bit more aggressive and cut out the formula and provide all of his nutrients via continuous IV (called TPN). This will alleviate his lymphatic system from trying to absorb any fat, and let it focus solely on healing. Once the fluid subsides more, it should alleviate pressure on his vessels and we should be seeing his enzyme levels return to normal as well (they’ve been trending down so far). It can take some time for the fluid to dissipate, so he may have to get drained again.
We have been told to expect a 4-6 week hospital stay while his body recovers. This isn’t what we were hoping to hear, but we are glad to finally have a way forward and enough time to make sure the treatments are working before being sent back home. We are ready to get off the back and forth from home/hospital rollercoaster.
It has been hard seeing how much weight and muscle he has lost in the last few weeks from all of this. It seems like he won’t be gaining much weight back while on TPN, but he has been able to keep his chunky thighs at least. We have also requested OT/PT to come and help us get his strength back up as much as possible while we are here. We are so grateful for this care, and hope it helps ensure he doesn’t fall too far behind with his physical development.
Even with a way forward though, Chris and I are both feeling a bit worn out. The nurses and medical staff must sense it (or just generally take pity on us) and have encouraged us to get out of the hospital together for a couple of hours this weekend. We haven’t left Joey because he doesn’t have the same one-to-one care that he did at the PICU, and being a baby, he can’t necessarily keep himself occupied as easily as older kids. But we have been reassured he will be well taken care of if we leave (it helps that he seems to be a current favorite of many of the team here). So, I’m thinking we might go on a real date at some point! Not sure what that will look like yet, since we can't really be around people due to Joey being so immunocompromised. Maybe an outdoor dinner? Anyway, it's something to look forward to!
As always, thank you to everyone for the continued support, encouragement, prayers, and love. Please keep it coming… we continue to need it on this journey!
All our love,
The Moschellas
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