Hey there, stranger. I hope you all are having a happy holiday season. I told myself about a month ago that I was going to stop writing updates for #JacksJourney - simply because it has become increasingly more difficult to do so - #Exhausted - and this specific blogging platform is the worst (Wix = 0/10 - Do Not Recommend).
However, you all have been so incredibly supportive of us this year, that I felt it was only right to provide an end-of-year update before 2020 closes out. I honestly have a tendency to withdraw when I am under a lot of stress (and DEFINITELY don’t feel like writing!), but this process has encouraged me to make more attempts to step outside of my comfort zone for the sake of others. Considering it has been a while since my last blog post - two months to be exact - I figured today would be a good day to do so. After all, I’m just sitting here at the hospital & have plenty of time on my hands.
But first - let me get something off my chest.
We are nearly ten months in our post-transplant journey, and honestly, we are beyond tired. We are merely trying to stay afloat at this point. Jeremy once mentioned that we are floating, but the water is now up to our shoulders - We don’t want to drown, so how much longer are we expected to keep paddling? We are making it, but barely (some days). It’s just so hard watching Jack go through so much with little breaks for recovery, and we are just as confused as to why our situation just doesn’t seem to be getting any better. Something has to give, right?!
December 23rd marked one year since receiving the gut-wrenching news of Jack’s cancer diagnosis, and we have been in pure survival mode ever since. Jack is currently in-patient in the hospital and has spent approximately 150+ days in a hospital bed this year since his cancer journey began.
What has made this year so difficult is that some days we feel like we’re making glorious strides towards progress and other days feel like the complete opposite. This constant emotional ebb and flow feels eerily similar to Jack’s NICU days where his health would take one step forward, only to take three steps back. Jack has had some really good days this year, but he has also still experienced some major health setbacks along the way. For example, we had an amazing Christmas holiday together as a family, and then everything went downhill literally the following day.
We are currently on Day 139 in Vanderbilt Children’s Hospital, and planning to ring in the new year in the same way we started it - in the hospital. Jackson has just been diagnosed with another bacterial infection in his blood stream called pseudomonas aeruginosa, which was causing fevers, vomiting and severe discomfort. There is no way to determine the cause of the infection due to Jack’s compromised immune system and current medical complexities. He will require another surgical procedure because the infection has affected a medical port device under his skin which we use to administer all of his IV medications and draw bloodwork. The port will need to be removed as soon as possible, and we will have to remain in the hospital until a surgery date is determined and infection is properly treated.
Jack also has had several procedures since my last update, mainly regarding his liver bile duct and a stricture that was preventing bile from flowing properly from the liver. He now has an externalized biliary drain coming out of his abdomen to help correct the issue, which is a year-long process in itself. We are still constantly in and out of the hospital for surgeries and illnesses and honestly not so sure when he will reach a point of stability. We also still have no update on when we will be able to return to our home in Charlotte, NC - and at this point, I barely even remember what it looks like!
Jack also now has hearing aids, which he will require to wear for life due to the permanent high-pitch hearing loss that he experienced from his cancer chemotherapy treatments. He received new ankle braces (AFO’s) to help strengthen his legs and improve stability - and is working diligently with his physical, speech and occupational therapists when healthy & at home. We need him to get better and have more consistent weeks out of the hospital so that we can continue focusing on his overall growth & development.
2020 has put our little family through the ringer, but we are thankfully still standing. We are praying for better days, praying for strength to keep pushing through the unknown, and praying for a (hopefully) better 2021. We are so sad to be ringing in the New Year in the hospital instead of at home, but
we understand that this is where Jack needs to be. Be safe out there, cherish your health & the time you have with your family, and we will see you in the New Year.
