The afternoon of Casen's surgery we also learned that his biopsy confirmed a rare form of Nephrotic Syndrome, FSGS, which is highly drug resistant and often leads to kidney transplant and a life long battle. FSGS is so rare he will likely be the only patient with it through the entire careers of all the primary care pediatricians he sees. For this reasion, it's necessary that we travel to Austin, TX regularly to receive care by his pediatric nephrologist.
I have been so consumed with his current condition, that I haven't had the time to sit and process the results of his biopsy and what it means for all of us in the future. Prior to his biopsy, my dad gave Casen a blessing that was extremely comforting. Casen was blessed that his body would be able to rid itself of this disease and that he would go on to lead a healthy, normal life. We know his disease is continually damaging his kidneys and he may need a transplant in early childhood and multiple other times throughout his lifespan, but we firmly trust the Lord and can’t wait to see what he has planned for the rest of his life!
If you are curious, and want to know more about his disease this site has some great information: NephCure
3 comments:
I wish I could come and help you out Melanie! I just wanted to let you know that my family has been praying for Casen and will continue to!
This is hitting so close to home for me that I am sobbing as I read your post. I am so sorry that your going through this I know we haven't seen each other for ages but your family is in my thoughts and prayers. I know when I was living in the hospital for 5 months that brought me comfort knowing that people who were not able to do anything were praying for our baby. I also put your names on the prayer roll in the Mesa temple. Hang in there!
Holy cow! What a mess! I'm sad that you are all having to go through all of this - how traumatic. I hope things will clear up soon for him. Keep us updated. And thanks for the link to your blog. If you want ours it's 3mccreadys.blogspot.com
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