Here is my Kick in the Gut for the week. I was speaking to our doctor’s nurse (she is fantastic btw), and we were discussing how we can get the OT/SLP/PT here at the house through home health. It has been approved through insurance, but we are finding difficulty in anyone who will work with pediatrics. It has been a bur in my saddle.
I called our local hospital, and they said they could do it. Yay. Then the nurse from our doctor’s office called and said she was facing resistance. She said that because Hunter is “medically fragile” that they will not see him. He is not a do therapy and get better kind of kid. He is a do the therapy and maintains his status type of kid.
I’m surprised I heard anything past “medically fragile.” I think I did miss a lot because those 2 words, used in a sentence with my son, cut me to the core. The definition of medically fragile is defined as a chronic physical condition which results in a prolonged. Dependency on medical care for which daily skilled (nursing) intervention is medical. Maybe I knew that deep down…..but hearing it forces me to come to grips with the diagnosis that my son has.
The longer he is symptomatic, the more chance of him having permanent brain damage because this is a neurological condition. I sit here and watch him, and I see that he shakes. That he struggles with walking. Also, I hear his speech issues, food issues, his eye twitching. He truly is medically fragile. There is no cure. There are massive drugs he has to take to maintain his health, but those drugs have massive side effects that have adverse effects on his health. It is a double-edged sword.
This disease is horrible. It is uncertain. It is incurable, by man’s standards. I hate it but I’m reminded of my sweet friends Mr. Cliff and Ms. Jan…..as I was telling them the latest in the saga of our life, at church one morning, Ms. Jan looked at me and said “but Brandi, you have to remember this one thing…..1 Thess. 5:16-18 “Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.” *Emphasis is mine* It does not say “be joyful when things are great, and everyone is behaving and healthy.” It says to be joyful ALWAYS. Be thankful in ALL circumstances.
He is alive and has an amazing support group. During his treatment with his misdiagnosis, he got the same nurse. I am able to keep his birth mom up-to-date. My family and the support we have received. Our church family and prayer warriors. My kids who see a need and meet it. I guess there is so much to be thankful for, even on the bad days.