Stage 5 Kidney Failure

It's time to update everyone on Graham's health and treatment. We asked publicly for prayer a while back in making some decisions about his treatment and so I want to share what we have decided. We found out at the end of the summer that Graham's kidney failure was progressing much faster than expected. We were told he had a couple of years before we would be discussing dialysis or transplant and instead we had a few months. 

Graham's nephrologist contacted the kidney transplant team at UNC who quickly turned Graham down for transplant and refused to even meet with us. Since we were unable to get any information from UNC we decided to pursue a second opinion from the Children's Hospital of Philadelphia. They too turned Graham down for evaluation for transplant. The main concern is Graham's tracheostomy and lung issues. To keep a new kidney happy the patient must be fluid heavy for a while which would increase Graham's breathing difficulties. And a person with a transplant remains on immunosupressants their whole life to keep their own immune system from rejecting the foreign organ. Having a trach makes a person more susceptible to infections which wouldn't be good for somebody with a suppressed immune system. It was long, stressful road to find out that Graham would not be eligible for a kidney transplant. 

Once we knew that transplant was not going to be an option we still had to decide whether or not Graham would do dialysis. Because of Graham's small size, heart issues, and other issues he would not be eligible for hemodialysis (the kind most adults do where they go have their blood cleaned several times a week at a dialysis center). But we could do peritoneal dialysis at home. This would involve surgery to put a catheter in his abdomen and putting a solution into his abdomen and emptying it out every night to get rid of toxins that the kidneys are supposed to filter out. The infection risk is very high. The survival rates for children on peritoneal dialysis are not impressive. 80% in the first year. 50% in the second year. Because of Graham's lung issues it was likely that this type of dialysis would cause his lungs to stay too wet and increase his breathing difficulties. Matt and I really struggled with the deciding on dialysis. We knew that our goal for Graham was the least amount of suffering, not necessarily the longest life. In the end his pulmonologist who is also head of the pediatric palliative care team at UNC helped us realize that nothing in Graham's overall health would improve to the point of qualifying for transplant in the next couple of years so its not like if Graham made it through dialysis for a while then there was hope of a recovery. And she let us know that our nephrologist was "going against the grain" to even make dialysis an option for us, but that she offered it because Graham is such a unique case and he was still at home enjoying life. So, after much prayer and much counsel and many tears we decided not to pursue dialysis. We will continue to treat Graham with other medicines to keep him feeling well as possible as long as we can. 

Graham is now in stage 5 kidney failure. We do not know how long we have with Graham but it is likely less than six months. We are begging God for more time and trying to make the most of the time we have. We just got back from a wonderful trip to Christmas Town at Busch Gardens through Make-A-Wish. Please pray for our family as our days are difficult emotionally and physically. Coordinating all of Graham's care is overwhelming. Despite Graham's declining health he continues to learn and enjoy life. He has recently learned his alphabet and how to spell his name! He is such a sweet special boy and we love him so much!