The liver biopsy procedure yesterday itself went fine. A few hours however after they monitored her down in post op recovery and she was doing well, we got up to her room, and she suddenly started shaking, threw up, looked horrible, was moaning and clearly in a lot of discomfort and the thermometer showed a 105 fever pretty much out of nowhere! It was shocking. Her blood pressure was alarmingly high and her pulse was 198 (not good) and she had a rash all over her body. It was really scary. They couldn’t do an ultrasound to see if there was bleeding or blood clots because the pressure dressing from the biopsy had to stay on. They got the fever down with cold cloths and IV Tylenol and she thankfully returned to herself not too long after. But that reaction complicated everything and triggered a big workup, blood cultures, ultrasounds, X-rays, urine catheter, and days of IV antibiotics “just in case”. The nightmare continues. The infectious disease team thinks it’s “transient bacteremia” (some pathogen leaked into the bloodstream during the procedure and triggered a response).
The results from the initial liver biopsy are back as of this afternoon and this does not look like acute liver rejection. There is another more rare type of donor specific rejection that it could be, but they have to wait 3+ days on the stains for that to come back. That type of rejection is more complicated to treat and would be worse than an acute rejection that they are used to treating. Baby Rose once again stumps everyone and no one knows what is going on or why her liver enzymes are so high.
While they had her under anesthesia, they swabbed the ulcers in her throat and on her tonsils and sent that off to pathology. The EBV (Epstein Barr Virus) was not detected (thank God)! They are HOPING that it is hand foot mouth as that would explain a lot and they could name a virus vs. continually not knowing what is causing several mystery symptoms. They have run SOOOO many tests on her. Because her body has essentially no infection fighting capacity, it is going to take “a really long time” for the ulcers to heal. We have started NG tube feeds with the hopes that she can tolerate them and the ulcers are limited to her mouth/tonsils only. If so, that will allow us to decrease the TPN (IV synthetic nutrition she has been getting the past several months). Currently she has been on that 20 hours a day and hooked up to machines and wires and it totally sucks and can’t be good for her body long-term, but it’s literally keeping her alive. She still has multiple blood clots in her other leg from the failed PICC line she got in January that we are dealing with daily. We have to give her a shot twice a day at 6am and 6pm in order to reduce the risk of stroke. She has to get IGG infusions every other week (which require more pokes) and Grannix shots daily which causes her bone pain as a main side effect.
It’s getting harder to stay positive and hopeful without one single break the past 16 months since she’s been born. This is the most taxing experience and it feels never ending. It’s physically hard for me being 9 months pregnant and sleeping at and being in the hospital, emotionally and mentally draining watching your baby be tortured (sometimes seemingly needlessly and “just in case”) when they should be thriving. It’s financially draining with SO MUCH missed work and loss of income for both me and Michael. Our entire lives have to revolve around medical care 24/7 and trying to survive. Is Baby Rose worth it? 100%. Do we hate that this is how things are and the toll it takes? Yes.
I sometimes have a hard time seeing/hearing “normal parents” complain about how hard their lives are taking care of their kids and how tired they are when their kids are perfectly healthy and they are free to do whatever they want and not limited by a medical diagnosis. I hate it when strangers see us and comment about “how my hands are about to be so full”, and I don’t want to hear any more well meaning stories about how someone had to take their child to the ER one time and how scary it was. I also know full well that things could be worse. I’ve seen via social media glimpses into a worst case scenario for some others that are on the same path as Baby Rose with biliary atresia and liver transplants that have lost their children to death and that puts things into perspective quickly.
Although very challenging, I am trying to be grateful for the positives. Because allowing the negative to rule, quite simply, is not helpful. I guess “Keep on the Sunny Side” is my favorite song for a reason.
Emily
