The Decline Has Begun

I am surprised at how much I think about Logan's disease now that he is not 100% kidney function. The good news is that the substantial drop from 100% to 60% did readjust itself to 80% after modifying the blood pressure medicine, enalapril, with Chlorothiaz. The bad news is his blood pressure is NOT being managed as well. This whole disease seems like a trade off of different side effects. We try to limit his red meat just because it puts so much strain on his kidneys but he is now anemic. So he is now at stage 2 kidney failure and that has occurred over the last 7 months. We have another nephrologist appt on July 15th with a full abdominal and renal ultrasound scan scheduled for July 8th.

Needless to say we have started family conversations about Logan needing surgery at some point. We have talked to the boys about our hero, Chris Schmidt, who selflessly donated a kidney to his friend and saved his life. Ethan did a verbal report on him at school. We have talked about how we will be looking for our family's hero to donate a kidney to Logan.

The other night we were lying on the floor in the family room and somehow the various scars on my tummy came up. I told the boys about my appendectomy with Ethan at 30 weeks pregnant. Then Logan asked about the "gash" in my right side. I told him that was where mommy had to have some of her kidney removed when she was 7. He gasped and asked "Will I have to have my kidney removed when I am 7?" In that moment I realized that even though I cannot donate a kidney to him due to not having 2 full kidneys (and mutated kidneys) I can be his normalcy. He may be not as scared knowing mommy went through something similar at the same age. For that second, oddly, I felt better. Like I had something to offer him that was maybe just as important as a kidney. Security. Normalcy. Relate-ability.  Not being able to donate has been the worst part of this WHOLE thing. I have felt so guilty knowing I can't help him feel better by giving him  a healthy kidney. I am finally feeling like I can give him something no one else can. I want to believe it will mean more that his mommy went through something similar and it will make him stronger.

Thanks as always for reading and your support.

Ann and Dave