It has been a whirlwind of a week but we have some very important updates:
Jack got a liver donor match!
Less than 3 weeks after we relocated to Nashville, we got THE call. It was approximately 10:30 pm on Monday, April 13th, and Jack had not been feeling well for the past couple days. He was supposed to begin chemotherapy earlier that day but his blood count levels were low and he was having reoccurring vomiting episodes, so his pediatric oncologist at Vanderbilt Children’s Hospital decided to postpone treatment. Luckily, we were able to allow him to rest for majority of the day, not knowing what would unexpectedly transpire in a matter of hours.
We were allowing Jack to rest and preparing for bed when Jeremy's phone rang. We were told by one of the transplant team doctors to be at Vanderbilt Children's Hospital as soon as possible because they felt as if they may have found a liver donor match. All of a sudden, it was as if the world stopped. The adrenaline immediately kicked it and what felt like a rush of fear, excitement and anxiety completely consumed me. I didn't know whether I wanted to jump for joy or burst into tears, so I just hugged sleeping Jackson, gave him a kiss, and prayed over him.
Deep breath in. Deep breath out. Let's go.
We packed our hospital bags, which we can now do in our sleep, and headed to the hospital. Considering the gravity of the situation, we received special permission to both check into the hospital for Jack's surgery prep. We were taken to a room in the Pediatric Intensive Care Unit (PICU) where Jack would get settled in and begin hours of testing and lab work. He still wasn't feeling well and was vomiting, so we were beginning to become concerned about him going into such an intense surgery and not feeling well. Doctors decided to go ahead and begin a "fast" for Jack (no food or liquids) to prep him for surgery and to give his tummy a rest. We were told that Jack would undergo several tests to ensure he was healthy enough for surgery, all while this mysterious donor liver was also undergoing extensive testing to ensure it was a perfect match for our little Jack. All we could do was wait and keep him as comfortable as possible in the meantime. He was hooked up to several IVs and nurses began administering countless medications to prepare his body for the procedure.
Around noon the following day (Tuesday, April 14th), the liver match was confirmed. We were moving forward with the procedure. By that time we had met with the transplant surgical team, neurosurgery, the PICU attending physicians/residents, anesthesiology, infectious disease, oncology, hematology, hepatology, pharmacist, and several others throughout the night and into the morning. It felt like the doctors were literally lining up outside our room (6 feet apart) waiting to meet with us for a pre-surgery consult. This was really happening.
At 2:30 pm, the anesthesiologist came to our room to take Jackson to the OR. He was given medication to relax him, and he was wheeled off past secured doorways to their operating rooms. The long hallway past those doors gave me a glimpse of what the "point of no return" looks like. Once again, we had to say goodbye to our baby. With tears rolling down our cheeks, we kissed little Jack goodbye, but felt confident we were leaving him in good hands with his neurosurgery and transplant surgical team.
From that point, Jack embarked on a 10-hour surgery to have an ventricular shunt externalization and liver transplant. These were surgeries #7 and #8 for Jack. The shunt externalization was completed by his neurosurgery team first, and this is because Jack has a magnetic device (shunt) in his brain from his traumatic brain injury at birth, and parts of the device allow extra fluid buildup to drain from his brain and flow down into his abdomen, which would directly interfere with the liver transplant. This tubing was removed from his body and "externalized" through a hole that was created through his chest/clavicle. He would have to have another surgery (#9) later to repair this temporary fix. The liver transplant process took place after the shunt externalization, which took about 9 hours just for that one operation. Thankfully, all went well!
Around 1:00 am we received a call that the surgery was complete and that Jack would be returning to his room in the PICU. An entire team of nurses and doctors lined the hallways in preparation for his arrival. Getting him stabilized in the room looked and felt like another operation in itself. Jack was very sedated and on a ventilator machine when he returned, and nurses immediately began setting up what felt like a dozen machines to monitor him and administer medications. He had several lines hooked up to his body and multiple tubes coming from his abdomen to help drain excess blood, bile fluids, etc. It was terrifying to see him in such a state, but we were reassured that he was doing well, considering the extensive procedures that were completed.
Around 3:30 am, Jack was still being stabilized and we were encouraged to try to get a little bit of sleep. Jeremy and I were allowed to stay one night together with Jackson immediately after surgery to ease our anxieties about how he was doing/feeling/coping, but one of us had to leave first thing the next morning due to COVID-19 policies. Jeremy and I have been switching out approximately every 24 hours to be with Jackson. I have seen him for only brief moments in passing at the hospital entrance as we switch out. It feels so inhumane. Going through such as difficult time in the middle of this COVID pandemic has been extremely hard, not only because our family is being split up for several weeks away from "home" but because Jackson is also now realizing that we are not together as a family. He cries for me when I am not there and vice versa.
One week later and Jack is still in the PICU but is shocking the hospital staff and medical team, per usual! He is recovering wonderfully and doctors are truly amazed by his progress, considering how high risk he is labeled. Many of his tubes and IVs have been removed, and he is gradually becoming more like his normal "self." His neurosurgery his planning to have his next surgery either tomorrow or Wednesday of this week since he is doing so well - we were initially told it would take about a MONTH to do the 2nd half of the surgery, and Jack seems to be ready after one WEEK!
Please keep Jack in your thoughts and prayers has he undergoes his shunt revision (neuro/brain surgery). He is anticipated to remain in the hospital for several more weeks for transplant recovery, but we are remaining optimistic and encouraged. I put on social media yesterday that I feel like I have the strongest little boy in the whole wide world, and there is nothing anyone can say to convince me otherwise. Your thoughts and prayers have been felt and heard, and we are overflowing with gratitude with the many ways God has blessed us in this situation.
And to the precious life that was the perfect donor match for our son - THANK YOU. Thank you for giving up your life to help save my son's life. We would love to explore possibilities of locating our donor to thank his/her family one day, if possible. God bless them a million times a million.
