11/14/2024
Long day...
So the first appointment today was with the neurologist. We learned that Brady's IgG levels are low. We knew this but what we didn't know is that they are lower now than when he had pneumonia recently. We have been warned that he is currently able to catch illness very easily... if this downward trend continues, he will be ordered to receive SCIg I fusions at home every two weeks to bring those numbers up. From what I understand we will be taught how to insert a needle and using a pump, infuse him with immunoglobulins that willl help him. This will
Subcutaneously, so, Tim will do an excellent job... (I just don't know I have it in me to poke him any more after all the blood thinner shots.) I was told that the 300-400 ranges is where you start seeing issues... his IgG is 433. We will repeat labs in 3 months and see the neurologist again in 6 for a follow up. (More to the convo with him, I just don't have it in me tonight to go over it all)
Please - Please if you see us in public and your not feeling well, say "hi" from a distance. 🥴
Next was the orthopedic surgeon.
Right now, having the tendon transfer surgery isn't a necessity per say, but he's a good candidate and it would improve his quality of life as well as be a preventative measure so that he doesn't have contractions in his ankle that get stuck. At the same time, they would also do an Achilles Tendon release surgery, which is necessary. We do not want him to tear that tendon with how tight he is. He would be in a cast for 6 weeks. After the first 2, it would be removed so they can check the wounds and then re-cast him for the remaining 4 weeks. It's a same day surgery.
The surgeon sent us home and scheduled a follow up in 3 months. She wants us to think it over and come back with any questions or concerns. For me as a mom, I wonder, should this wait... why put him through surgery with similar recoveries 2 times in stead of one. I certainly want a better quality of life for him though.. things like running might actually be a possibility for him again, not scraping the tops of his toes on concrete during summer swimming season, not having his ankle hurt all the time, better balance on the left foot/leg, getting shoes on easier, wtc.
She did say though if he could no longer get to neutral (today he was able to with manual manipulation) then it does become a needed surgery. To be honest, it's likely the Botox that is allowing him to get to neutral at this point. 😩
Anyhow... long post.. lots to ponder..
anyone else have this surgery?
❤️
