It has been a full year since I took Josiah to see a new Nephrologist and that same day being admitted to the hospital; being told that Josiah was in renal failure. It was a shock, but also explained how run down he had been, moody, and constantly getting UTI’s.
Such devastation, hearing the words “end stage renal failure” it sounded like a death sentence. I know is scared Josiah, I had to ask the doctors to explain what it meant and iterate that that Josiah was not dying, but just needed extra special medical care.
We tried everything those first two weeks to see if he would respond to diet changes, & medications to not have to go to dialysis. I remember dialysis sounded so scary.
Ultimately, dialysis was necessary. Josiah went to surgery to have a dialysis catheter placed, and when he came out our world changed. 3 times a week we drove into Boston to have treatments, he missed school, but had a tutor bedside to help him with his assignments. I was able to work at his side, my office was SO accommodating, and it was lovely to not have 1 more added stress to the plate.
Daniel took all the tests and really railroaded the whole process to get Josiah to transplant ASAP, the doctors were impressed. From Diagnosis to Transplant it was just at 6 mos.
And now we are 6 mos out from transplant. Josiah’s numbers remain wonderful. All of the medication changes have benefitted our lifestyle, no longer 4x a day, but simply morning and evening. At 6 mos he is allowed to take even less of his immunosuppressants, and we are working on that with reducing his dosage and checking his labs to ensure we remain in the correct range.
I am so proud of how well Josiah has handled the WHOLE of it. It was scary and felt life threatening, yet he still maintained a good attitude. During dialysis he had all the hearts of the nurses and doctors in that unit. And now the doctors tell us that the residents all fight for who gets to come in and run his clinic day appts. He charms them with jokes, his natural curiosity and questions, and of course his hugs.
I can’t express how blessed I felt when you all donated to this COTA fund. Seeing the names of my dearest friends and family on the donor’s list, during a time of personal upheaval when it seemed that I had lost so many, it stunned me. I cried so many times reading your names and watching the $$ go up and up!
Thank you all from the very deepest depths of my heart!
God is so good and faithful,
Katherine