Made It Home, but Still in the Hospital

On June 2nd, Jackson was FINALLY discharged from the hospital for the first time since his liver transplant after spending 50 consecutive days in the hospital. It was such a beautiful day, and I literally cried as I saw him come out of the exit doors of the hospital. I can’t even begin to explain how emotional it was to see the smile on his face as he felt the sun and breathed fresh air for the first time in seven weeks!

We were so excited to finally have him home, but also extremely nervous because of the extensive follow-up care and medication management that was required. Jack came home with approximately 16 medications that have to be administered daily at specific times - and cannot be accidentally missed for any reason. It took Jeremy and I about 45 minutes to prep his medications for administration that first day. We were luckily able to cut that time down to about a 30 minute medication prep-time, which happens twice a day.

We are also scheduled to meet with his liver transplant team at least twice a week to draw bloodwork/labs and to check in on his liver functioning and transplant recovery progress. We honestly did not care what needed to be done, as long as it kept us out of the hospital and together as a family.

Well, those high hopes were short-lived, because Jack was readmitted back into the hospital less than 48 hours after coming home due to respiratory distress and increased white blood cell counts. After close evaluation, Jack was able to come home a couple of days later on a CPAP breathing machine to use at night to assist with his severe sleep apnea and episodes of respiratory distress.

Since then, he has been readmitted back into the hospital three times and has also been hospitalized for the past two weeks for evaluation for persistent, yet unexplained vomiting episodes he has been experiencing lately. We are still here and have watched Jackson undergo extensive GI testing and biopsy procedures in an attempt to identify the culprit of his vomiting and pain. He was diagnosed with gastroparesis, where his stomach is not able to properly empty itself, causing him to vomit. He also has developed ulcers that we are currently trying to treat.

In an attempt to ease his discomfort, Jack unfortunately had to take a step back with his oral feeding and had to have a GJ-tube placed in his stomach. The GJ-tube is different from his G-tube (that he has had since leaving the NICU) in that he is not currently able to orally feed and is instead connected to a continuous feeding pump 20-24 hours a day. The feeding tube skips his stomach and to allow all feedings to go straight into his small intestines, with hopes of eliminating his vomiting episodes and allowing his stomach to have time to properly heal itself.

Jeremy and I were initially upset about this setback for Jack and not being able to progress with his oral feeding and development. We were also concerned about how being constantly connected to a feeding pump would affect his quality of life outside of the hospital (and how it would affect ours, as well). Jackson's doctors told us that this would hopefully be a short-term setback, but could potentially be necessary for several months to over a year. We will be working vigilantly with his therapists to help him to continue to develop despite his circumstances in the best ways possible. At the end of the day, we just want whatever is best for Jack and will make him healthy again.

I am so sorry that this is not the exciting update that everyone was anticipating, as we now approach Day 70 in the hospital. Unfortunately, all the tests and procedures did not seem to alleviate Jackson's symptoms, as he is still vomiting almost daily, multiple times a day. We are uncertain of what needs to be done at this point and when Jackson will be able to come home. We have also not been given a timeframe as to when our Nashville stay will be complete and when we can return to our home in Charlotte. Jeremy and I are still both working while caring for Jack - Jeremy is traveling back and forth to Charlotte as much as possible while I am working-from-home full-time Monday through Friday. This has truly been a test for all of us.

I was surely hoping to post an update that solely highlighted our excitement and gratitude for being out of the hospital (finally) and reunited as a family. This has been such an emotional roller coaster being separated for so long, even for special occasions like birthdays and anniversaries, all while trying to remain hopeful as your child is suffering. We are still grateful that we have been able to have brief moments of quality time as a family. In the same breath though, we also are still hurting because our little boy is hurting and can’t seem to catch a break. We are desperately wanting to get over this hurdle so he can feel better and get back to thriving again soon. Here’s some photos of his smiling face in the meantime, because you all know that’s never going to change, no matter what he has to endure.

Until next time.