Living this roller coaster ride we call life… I really need to blog in real time. I had this blog post brewing for a couple days… and life was happening, I had pictures that I needed to edit…and thoughts I wanted to gather. I wanted this to showcase a glimpse of our life not in crisis.
Unfortunately, life keeps happening and blog posts get pushed aside…and now I have to preface this look at our life in pictures with an update on Katy.
It’s been about a month since Katy was diagnosed with her latest bout of rejection…and the update today was not good. Katy’s echo today once again showed NO change in her heart function. Her heart is very stiff, her heart rate is dangerously high, and there is some evidence that her kidney function is not where it should be ( which could be a result of too much lasix, but could be a sign of heart failure) Currently, Kate is at her max for management via her current meds. In order to make some med changes she needs to have another cath/biopsy to check her pressures and her pulmonary function. Once we have that info the team can make some med changes in hopes of supporting this heart and getting it back to a happy place. Obviously, this is not the direction we wanted to head in… we all hoped to see improvement in her function by now. We are in a wait and see hold right now until we can get her in for a cath.
June is a crazy busy month for us and Katy has a fun filled calendar of things she doesn’t want to miss. So we will be struggling with that balance of her health and quality of life… it is the hardest piece for me. I want so badly for Katy to just have a normal life… to not have to spend so many of her days in the hospital. I totally expected life to be easier post transplant… sadly it has not.
We still try and take it one day at a time and make the most of all our days when we are not stuck in the hospital.
We pack up and head the beach!
We spend time with cousins…
I expect that June will be a trying month… I also know that we will do all we can to take advantage of our time together!