Today marks exactly 4 months since Jackson's liver transplant. I can't believe how much life has changed since April 14, 2020. Things have been a complete roller coaster over here lately, but I at least wanted to provide a brief update on how Jackson has been doing since our last post. Our little fighter celebrated his 2nd birthday, and although he did not get to see any family or friends due to COVID-19, we still cherished the time we were able to spend together just the three of us. Plus, being out of the hospital and together as a family for a holiday was HUGE for us. He is so strong, but his little body is still putting him through so much.
We are currently walking into Day 81 in the hospital, where Jack has been re-admitted for a 101.4 degree fever. It may not seem like much to most (and I honestly wish it was minimal for us, too), but for liver transplant recipients, any temperature over 100 degrees is a cause for major concern.
We have been consistently in and out of the hospital for the past month or so, and this is literally his 5th time being re-admitted since my last update 6 weeks ago. We can barely make it two weeks at home before we have to be re-admitted. Since then, Jack has still been enduring persistent vomiting due to his gastroparesis and and has been experiencing elevated liver enzyme levels. This can potentially become a major concern if his body is trying to reject his new liver. He is still not taking any food/drinks by mouth and is fed 100% via his GJ tube in his stomach & intestines. In order to further evaluate his symptoms, Jack has recently undergone two liver biopsies, a bone marrow biopsy, a colonoscopy and an endoscopy - all in an attempt to identify what's going on internally and contributing to his presenting health concerns.
His current fever is indicative of his rising Epstein-Barr Virus (EBV) levels, which can also be a major concern if not managed quickly enough, hence why he is back hospitalized for monitoring/evaluation and to receive IV antibiotics. Our poor baby just got out of the hospital less than 48 hours ago, and is right back in tonight.
So, instead of crying the night away, I decided to write a quick update while Jeremy sits at the hospital with our son, and I sit in silence on the couch in our Nashville apartment (both parents are still not allowed in the hospitals). This is still extremely hard for all three of us, as it feels like there is still no light at the end of this dark, dark tunnel. We are tired and still trying to take things one day at a time. We hate every time we have to be separated from each other. We hate seeing Jack in pain. We hate being in the hospital. We are just ready for all of this to be over so that we can go home and feel "normal" again. Hopefully one day is some day soon.
