The Complications - What A Rollercoaster…
It has been discussed with us from the very beginning that Dylan would need a kidney transplant. This was always talked about as being the goal we needed to reach. It took almost three years for Dylan to be big enough to be able to receive a kidney transplant as they use adult kidneys and they need to make sure the kidney will fit where it needs to go. When we got word that Dylan was finally big enough to receive a transplant and that St Paul’s Hospital had a matched donor, we were incredibly excited! We were finally about to reach our goal!
Don’t get me wrong in what I’m about to say. I will forever be grateful that someone was generous enough to donate their kidney to my son. I also know that we will get to a much more stable point than one we have been in. But so far, things have been rough since transplant. Our expectations were more focused on challenges being from recovery of a major surgery. We didn’t really know what to expect post transplant as that wasn’t talked about much.
Dylan did great in the first few days. His new kidney was referred to as a Ferrari kidney because his bloodwork looked perfect within 24 hours of being transplanted and it was producing lots of urine before he was even out of the OR. This was so exciting. Things became challenging shortly after we were moved out of the PICU and onto the ward. Dylan had disconnected his epidural at some point throughout the night and we were having a difficult time managing pain. The acute pain specialists (APS) were wonderful and very on top of things to get Dylan’s pain under control. After a day or two we noticed Dylan was hallucinating and decided it was time to start lowering his pain medications. He was also having some big issues with diarrhea. While trying to wean off pain medication, Dylan went through a severe withdrawal which required us to restart the wean twice. Once we were finally finished the wean, we tried conquering the diarrhea issue that hadn’t resolved. This proved to be challenging for weeks!
We have learned in our post transplant journey that when you have diarrhea, one of the immunosuppressants gets absorbed differently. So his trough level results were all over the place. It was determined over time that his diarrhea was being caused by the second immunosuppressant Dylan needs to be on. This medication is well known to be very hard on the GI system. Thankfully there is an alternative for this one that he was switched to and his been tolerating with no issues. Diarrhea, however, landed us in and out of the hospital for weeks post transplant for dehydration while his GI tract also healed.
Once things finally seemed like they were trending well, we were given the okay to go home. Within a few days of being home, Brian noticed Dylan looked a bit puffier than he normally does. Anyone in the kidney world knows puffy equals bad. I emailed the team photos of Dylan and said we weren’t sure whether to be worried because he seemed completely fine otherwise. They also didn’t feel it was majorly concerning because he was only puffier-looking to us really. They did want labs though just to be safe. Things changed quickly after this, as blood results showed Dylan had an acute kidney injury and his kidney was not functioning as it should be. This was devastating news and resulted in a flight to BC Children’s Hospital.
We spent another few weeks in hospital figuring out why Dylan had a kidney injury and how we can get it to recover. Thankfully it did eventually recover, and it was determined that because of Dylan’s diarrhea issues he was absorbing his immunosuppressant very well and it was in toxic ranges. During this admission, Dylan was also found to have Rhinovirus/Enterovirus and a C. difficile indeterminate result. He was treated for the latter as a preventative and thankfully his diarrhea actually resolved after this admission!
Things seemed to be back on track after a few weeks and we were again told we could go home. A week later, we came back for Dylan’s first kidney biopsy. Unfortunately, preliminary results came back a few days after that and Dylan’s kidney was showing signs of rejection. This time we were able to avoid a flight as Dylan was totally stable and well, but we did drive back to Children’s hospital for IV treatment for rejection. Once this treatment is done, we should be able to go home until they do another biopsy in January to see if the treatment worked.
Again, don’t get me wrong. I am overly appreciative of our donor and for Dylan to have received his kidney transplant. I also know that the first year after transplant is the hardest and there will be a day where things become more stable and we won’t be in hospital as much. It doesn’t mean things haven’t sucked right now though.
To finish on a positive note, even with the complications Dylan has had we have already seen some significant improvements in his quality of life that make it exciting for when we do reach that stable point. Dylan is able to play with Mason in ways he never really could because he was always so nauseous and sick. Dylan’s team always referred to him as a star puker with the amount he used to vomit before transplant and that has now completely resolved post transplant. The treatment for rejection also includes high doses of steroids which have made him start wanting to eat orally for the first time ever! I have no doubt we will eventually reach a stable point and I can’t wait for Dylan to have enjoy his new improved quality of life! Hopefully we are done with the complications…
