One Year Post-Transplant
Throughout most of Dylan’s life, Dylan’s teams have told us “the goal is to get to transplant”. No one really told us what to expect when we got there though. We were really only warned that the first year is the hardest, and I can absolutely confirm that to be the truth.
The first three months post-transplant were by far the hardest. Between withdrawals from pain medication, GI upset from the immunosuppressants, constant medication changes and monitoring, an acute kidney injury, a C-diff infection and a rejection episode, it was like a rollercoaster of problems. For a while it seemed like things weren’t going to actually get any better for Dylan compared to pre-transplant. Thankfully, we got to all be home just in time to celebrate Christmas together and that seems to be when things started to steadily improve for Dylan.
We initially thought it was going to be a challenge to get Dylan to eat orally, and I booked him in with Occupational Therapy (OT) right away once we were home to see if we could get a head start on this as Dylan had been formula and g-tube tube fed his whole life up until this point. He had such a strong oral aversion we wanted to be prepared for the battle to overcome it. There was a crazy shift though when we started introducing foods to Dylan. He began to really love it! Over the first 6 months of the year Dylan went from being exclusively tube fed to only getting medications and water through his g-tube! We ended up cancelling OT after the initial visit because Dylan started eating orally with no issues and his intake steadily increased. These have been an amazing change to see for him as his love for food continues to grow with exposure.
Dylan used to be known as a star vomiter by his dialysis team as he used to vomit large amounts and frequently. This led to a lot of dehydration issues and hospitalizations. We used to have receiving blankets everywhere in our house and never left home without them as they were the easiest way to catch and clean up the vomit. I would carry extra clothes and ziplock bags in a diaper bag anytime we went out. Travelling anywhere, especially to Children’s Hospital, I would always give Dylan Gravol to try and help him make the trip. Almost every time we drove longer distances he would vomit and it would be all over him and the car seat. Since transplant, there have been no electrolyte imbalance hospitalizations or dehydration issues and there has been no need for Gravol for our trips. There has been no more vomiting! Dylan enjoys car rides now, chatting the entire way, and looking at all the different vehicles we pass. We even got to watch helicopters drop water on a fire near the road once when stopped for lunch which he really enjoyed! Getting rid of all the receiving blankets felt like a huge victory that we were so happy to move on from.
Brushing Dylan’s teeth, I’ll admit, was a bottom of the list priority when Dylan was on dialysis. He wasn’t eating anything orally, and every time we tried it always provoked vomiting. As we struggled to keep his calories in to get him to grow big enough for transplant, it just wasn’t worth the battle most days. So brushing his teeth was a very rare occasion and never went well. He is followed by a pediatric dentist who also said his teeth were in good shape, so there was no concern at the time. Once transplant happened and Dylan started eating and the oral aversion began to disappear, brushing his teeth became much more frequent with no vomiting! Dylan now brushes his teeth every day and actually enjoys it, even asking to brush his teeth at times.
Now that Dylan was no longer getting formula, we were able to shift all his water intake to the daytime, which meant for the first time since he was a baby, Dylan would not be connected to any lines while sleeping! Brian and I bought Dylan his first “big boy” bed in the Spring and he has absolutely loved it! We have enjoyed getting to snuggle with him and read books to him in bed for the first time as well. His bedroom also no longer contains any medical equipment! Dylan’s closet used to be packed with dialysis solutions and supplies, and his dialysis machine and g-tube pump took up a good portion of his room pre-transplant. Now, all of that is gone and it’s just filled with clothes and toys like every other children’s room is.
Once the weather started to get warmer, Dylan has been able to experience summer to its fullest now that he doesn’t have dialysis lines that can’t be submerged in water. He has been to the water slides, spray parks, and even started in swimming lessons! He’s been able to enjoy things like bouncy castles and indoor gyms as he is no longer nauseous and vomiting all the time. He can go to the beach and play in sandboxes because there are no sterile sites on him anymore, although we still need to be careful with his vesicostomy for sand. Dylan has also been able to have normal baths and be submerged in the water. He has taken a big liking to making a bubble beard and driving his cars in the bathtub, so long as he doesn’t have to get his hair wet!
Dylan has been so full of energy and feeling amazing. Him and Mason have been really enjoying their summer getting to play together like they haven’t been able to before. They both have an incredible sense of humour and just love life. Dylan has also been growing like a weed since transplant, and now not requiring growth hormone injections. He even skipped clothing sizes going from a 3T to a 5T! As we near our one-year transplant mark, Dylan still has monthly bloodwork, constant changes to medications and frequent visits with his team down at Children’s Hospital, but we hope to start spreading out his appointments now. Even though we had a rough start post-transplant, we have gotten to see so many incredible changes. Transplant was our goal to get to for Dylan, and since we made it, he has been able to live the life he deserves to have thanks to his amazing donor, Marcus!
