Eye of the storm

These six weeks between surgeries is more terrifying than I anticipated. I can see behind me. How we got here; the fear, the tears, the courage, the strength. I look ahead at the inevitable awaiting us. There is no escape when you are in the eye of the storm. You have to go through.

We have 13 days. Thirteen long days of relying on a machine to keep Logan alive. Watching him throw up because dialysis makes everything taste badly but knowing he needs nutrition to even be approved for transplant. Thirteen long days of "nightmares" and "monsters" that cause so much anxiety for Logan that we have had to lay with him so he can "be safe" and fall asleep. More than 117 pills to take in 13 days. New side effects from immuno-suppressant medicines to start dealing with next week. Arguments with Metlife on FMLA approvals to be had. Discussions with Anthem on denied claims for dialysis treatments as they have said they weren't necessary because Logan wasn't classified as end-stage renal disease. Thirteen days of watching labs and discussing with doctors what needs to be addressed quickly and what will hopefully be fixed with the new kidney. Thirteen days of hearing the clock tick and feeling time move in slow motion. 

I am terrified of the next stint in the hospital and yet I am so eager to get through it. The saying "perspective is reality" has taken on a whole new meaning. Up until this point my perspective has tilted throughout hardships in my life, including my experience with PKD. It is easy to allow yourself to "forget" your kid is sick when hospital visits are not in the picture. Since June 20, 2012 when we first heard about PKD, Logan had been relatively healthy and we are allowed to spend the majority of our time watching blood pressure and feeling normal. The left nephrectory has forever changed how I see this disease. Having seen a glimpse of multiple hospital visits for Logan throughout his life, I think about the wonderful partner or family he will need around him to support him when Dave and I aren't able to be here for him anymore, the financial impact he will face because of a disease that he never asked for, and the pain he will go through multiple times in his life. My perspective has shifted in that health of the people I love is truly the most unappreciated gift I have taken fore granted in my life and I will never do it again. So as I scared as I am I need my little boy to be healthy again. I need him to run and climb and be monster free again. 

June 6th is the day for transplant. Please send all the strength you can our way. I feel every single one of you holding us up and cheering us on.

Thanks,
Ann & Dave Wiesman