Transplant!
It is with great excitement that I finally get to write about Dylan receiving his new kidney! This year for my birthday, September 25, an anonymous donor gave the amazing gift of one of their kidneys to our son. This year alone has been such a rollercoaster with so many difficult times for my family. It was a day filled with so many emotions but one we have waited a very long time for. Dylan went into surgery around 11:30 that morning and we didn’t get to see him again until close to 7 that night. It was a very long day and quite the journey afterwards!
We sat in the PICU waiting room for hours waiting to hear how Dylan was doing, and how the new kidney was doing. I tried very hard to not let my mind run wild with all the possibilities that could happen in the OR. When Dylan’s surgeon finally came to talk to us in the waiting area, I jumped out of my chair. I had so many questions. He sat us down and went through it all with us. Dylan’s new kidney was doing well! It started producing urine in the OR. Thankfully no JP drain was placed nor were extra central lines paced, so he had less lines in him than what we were told pre-transplant. This also meant there would not need to be removal of extra lines. The surgeon explained the surgery itself went exceptionally well and that the next few days were big to see how the kidney was actually going to function. Dylan was also left intubated and sedated to try and help with pain management the first night. He asked if we had a more questions and I basically screamed “can we see him?!”. We did have to wait until the PICU team was ready for us but we finally got to see him and it was such an exciting moment! Dylan had a new kidney!
Our first night was a bit of a whirlwind. The plan of keeping Dylan sedated didn’t seem to be working well as he kept waking up and fighting the intubation. This was very difficult to see. They would give more sedation to get him back to sleep and we would repeat this continually throughout the night. In the morning, the teams were called to pull the intubation tube for safety reasons. I was very excited for Dylan to have this gone. The extubation went really well and the first words Dylan said were “I need Blippi on”. We quickly got a Blippi episode on an iPad and stand that could be brought close to him to watch. Dylan seemed to be doing really well. Within 12 hours of his new kidney being placed, his bloodwork was normal. His nephrology team referred to his new kidney as a “Ferrari kidney” because it normally takes longer to see the bloodwork show.
Dylan seemed to continue to do well over the next few days and we were moved out of the PICU and on to the ward. Our first night on the ward was a pretty rough one, and it resulted in Dylan disconnecting his epidural line. We no longer had control over his pain. The acute pain services (APS) team was consulted and they came right away to try and help with the situation. We planned for removal of the epidural catheter and to start IV pain medications. Dylan seemed to be in a lot of pain this day so he was on pretty high doses. The next morning we noticed Dylan was hallucinating. APS was consulted again and a new plan was made. We had also discovered around this time that Dylan was having bad bladder spasms which could be contributing to his pain so a medication was started for that. Pain management was a very difficult challenge post-transplant especially with how young Dylan is.
Once pain management was figured out, we had a new problem: severe vomiting and diarrhea. Boy was this awful! We had a very challenging time getting Dylan off IV fluids as he kept becoming dehydrated and his new kidney was starting to show it. The diarrhea was the worst! Dylan’s doctors did an excellent job of acting quickly on things to keep his new kidney safe. It took a while but it was finally discovered this was being caused by one of the immunosuppressants Dylan was now taking. He was switched to a different one and over the next few days his vomiting completely stopped. Formula was also changed to a whole foods blend formula and these changes seem to have made things significantly better! Diarrhea is still a challenge, but it seems to be very slowly getting better day by day.
It has been a rollercoaster of a journey trying to figure out medications, dealing with withdrawals from medications, and dealing with side effects of medications. What we thought would be a week or two stay in the hospital ended up being a month. Having said that, throughout all the issues Dylan had, his new kidney stayed strong and didn’t seem to be impacted by any of the issues and is still functioning very well! Once the withdrawal was over and we got more of a handle on the right medications and doses, Dylan seems to be doing great and is having fun being in the Ronald McDonald House rather than the hospital! We cannot wait until we are aloud to go home and be all together again!
