I feel so badly that it has taken me this long to post another update. Nearly the entire month of May has passed — and not to mention that the hospital will not allow me to access the blog site on their WiFi network due to “potential threat content”, so this post was created on my phone lol.
I was honestly waiting to provide an update with hopes that we would finally be discharged from the hospital and reconnected as a family. Jack was doing so well & his transplant team was wanting to get us out of the hospital by mid-May.
Unfortunately, that is not the case...and we are still in-patient. 47 days later.
This is a marathon, and we are beginning to tire out. During this pandemic where most people have been ordered to stay at home, we have been forced to do the exact opposite. I would give anything to be able to just be “at home” with my family right now, and not separated and constantly going back and forth from the hospital.
I have respectively been taking the past few weeks to preserve my energy the best way that I can, be present for my family, and cope with the difficulties of this liver cancer/transplant/hospital life. I barely had the energy to write this post, but I know Jackson’s vast village deserve to be updated on his journey towards recovery, despite how I may be feeling.
We are now nearly 7 weeks post-transplant and Jack is still just as strong and resilient as ever while hanging out at Vanderbilt Children’s Hospital. So much has happened this month that I will spare you minute details and solely focus on main updates. I kept saying, “I’ll post an update after we get past (blank),” but more “blanks” just kept coming.
We have also been silently grieving the loss of another one-year-old little girl who received a liver transplant a few weeks before Jackson. Her passing was unexpected and sent a shockwave of emotions that we were not mentally prepared for. Although we never got the chance to meet her or her parents in person due to COVID-19 hospital protocols, it still took an unexplainable emotional toll on us. We were all navigating this journey together, and we were truly heartbroken to hear of her passing.
Jack recovered well from his kidney surgery and shunt re-internalization surgery, and we were anticipating being discharged by my birthday on May 16th. Unfortunately, his liver enzyme levels have been trending upwards and needed to be monitored more closely for possible liver rejection or infection.
So with everything going on, his transplant team decided to perform another liver biopsy, where they surgically remove tissue from his liver to send to pathology for testing. This determines whether he is developing any infections or experiencing signs of liver rejection.
At the same time, Jack also developed post-surgical respiratory issues that led his ENT (ear-nose-throat) team to complete a sleep study. We found out Jack has very severe obstructive sleep apnea that somehow developed after his liver transplant. This would require yet another surgery (#12).
This ENT surgery, which occurred at the same time as the liver biopsy on May 21, 2020, entailed removing his tonsils and adenoids (TNA procedure) and also attempting to surgically repair the underdeveloped airways in his upper larynx (a procedure called a supraglottoplasty).
Jack experienced respiratory distress post-op and had to be reintubated (placed on a breathing machine) for a few more days to allow his body to heal. This was incredibly difficult for us to see him back on a breathing machine and in so much pain. Because of this respiratory distress, he was moved back down to the Pediatric Intensive Care Unit (PICU) and was in critical care.
We spent almost a week in PICU before we were moved back to the pediatric regular floor in the hospital. Unfortunately Jack was still experiencing some respiratory distress while sleeping due to the surgery and sleep apnea, so we are back in PICU for further evaluation. He is currently resting and now has to sleep with a CPAP mask on his face to assist with his breathing while in a resting state. Hopefully this helps. And hopefully we can get out of here soon.
Jackson has also been diagnosed with two post-transplant viruses: Epstein-Barr Virus (EBV) and Post-Transplant Lymphoproliferative Disease (PTLD). We do not have much information on this yet, but hoping they are mild cases that can be successfully treated since it was caught early. I guess I’ll be providing an update on this soon as more information and details emerge.
Jeremy and I are just trying our best remain hopeful that Jack will begin feeling better and that we can be out of the hospital soon. Honestly, all three of us are tired. None of this has been easy by any means, but we will keep fighting.
Until next time.
