The beginning of our summer was marked by one doctor trying to set a transplant date for August, and the transplant doctor wanting to wait because Clayton wasn’t “sick enough.” As a result, we didn’t set a transplant date, and we are two months into summer, and I can truly say that we have enjoyed a full summer as I had hoped we could. 

Unfortunately, alongside our relaxing summer fun has come a marked decrease in Clayton’s kidney function. In June, his creatinin level took a big jump, which it hadn’t done since last November. That caught his doctors’ eye, but nobody felt that there was a need to take immediate action yet. Then when we went back in July for our monthly labwork, the results showed yet another big jump in his creatinin level. His level was 6.0–a number we never imagined seeing. I knew as soon as I pulled up the results that our wait was over, and the time for transplant had arrived. Sure enough, I had a phone call 30 minutes later from his nephrologist who confirmed my suspicion. He said he would like to get it scheduled right away. Our intention has always been to avoid putting Clayton on dialysis, but to get to a transplant before reaching that point. So now his GFR (ratio of kidney function) is 13 (out of 100), and the recommendation to start dialysis is for anyone with a GFR lower than a 15. So there really is no time to waste. Thankfully, Clayton has still not showed many of the clinical signs that patients often have with this level of function, such as loss of appetite, increased fatigue and nausea. He has been a little lower energy this summer than his usual, and he especially gets worn out in the Georgia summer heat. But he has been so blessed to still function and feel relatively well even with such low kidney function.

Once I had spoken with my doctor, it started the ball rolling towards getting the transplant scheduled. As with everything, it’s a process, and it’s been a long week waiting and working to get a date set. One thing that we decided partway through the scheduling process is that we really wanted Clayton to be able to start school and be there for the first week. We feel like so much “settling in” happens and so much information is given out during those first few days that it would be hard for him to go into surgery that week. Not only for him, but it would be hard for me as a parent of 4 kids in three schools to miss those first few days and hearing the reports from kids and going through all that paperwork! So we requested for the surgery to be after that first week of school. After working with the Emory surgeons and the team at our children’s hospital, we finally got a confirmed date.

Clayton and Matt will both have surgery on Thursday, August 22nd. Matt’s surgery will take place first thing in the morning at Emory Hospital, and Clayton’s surgery will be mid-morning at Children’s Hospital of Atlanta, right across the street. We are calling in our entire support team, and thankfully we will have two sets of grandparents on hand to help with two patients in two different hospitals and a family of 3 other kids at home. I am so thankful for their willingness and readiness to be here to nurture and take care of all of us!

Now that we are moving forward towards a transplant, there has been a mix of so many emotions. While a transplant has been in Clayton’s future since he was only 15 months old, it’s amazing that we have actually arrived at this point. While there are many moments of worry, fear of the unknown and private tears for a 13 year old boy having to go through so much, the feeling that hangs over all of those is gratitude. I am so thankful for a son who is faithful, cheerful and courageous. And I am thankful for a husband who hasn’t thought twice about himself as he goes through his first ever surgery to donate a life saving kidney to his son. It’s overwhelming at times to think about what is coming, but truly I am so grateful for God’s hand in our lives every step of this journey. I know He is in the details and I feel that now more than ever. So as we move forward over the next month I will keep Matt’s favorite verses close to my heart. “Trust in the Lord with all thine heart and lean not unto thine own understanding. In all thy ways acknowledge Him and He will direct thy paths.”  Proverbs 3:5-6