For all my worry, Atti’s surgery last week barely even registered on our list of Hard Things We’ve Lived Through. The hardest part of the whole thing was the drive. Once we got there we went right back, I joked around with the nurses and surgeon, sang songs with Atti while they put in the IV, held him until he was under anesthesia, and then I had just enough time to go to the bathroom and get back to the waiting room before they were done. Atti got a nice nap while he was under, then he woke up and we drove home. He didn’t even need Tylenol.
What they did was inject Phenol into his nerves to block some of the impulses that cause his muscles to go spastic. No cuts, just some precise injections using the biological equivalent of a studfinder to find the nerves that send out the rogue signals. Super easy, and the results have been spectacular.
Atti has a whole lot more use of his legs all of a sudden, as we discovered when he was able to stand up, on his own, without extensive equipment, for the first time since he was two. But what’s been even more exciting for me is that his language is exploding. Everything is governed by muscles, and in a kid with cerebral palsy, those muscles are unpredictable. Atti’s legs are tight and spastic, his trunk and arms are weak and floppy, and his tongue and mouth are tight again. The Phenol was focused on his inner thighs, but it does have a global effect on his spasticity, and what he’s suddenly able to say is beyond thrilling.
The other day we went to a friend’s house to celebrate her recent wedding. I told Atti to say Congratulations and he ducked his head into my shoulder and said, “No, I’m feeling shy.” We haven’t even been able to get him to respond to a choice between two options, and all of a sudden he’s speaking in full sentences and naming his feelings. This morning I woke up to find him literally quoting scripture as he was repeating the sacrament prayer from church. I took too long getting his diaper on him after his bath and he peed on the floor, and then told me the cats did it. All day long I’ve had to stop what I’ve been working on to listen to him recite his favorite book to me, verbatim. And then I called his grandma and made her listen to it.
This is a very very big deal for the obvious reasons, but also because it is a trial run for the permanent version of this. There are surgeries where they go in and cut the nerve instead of temporarily block it with medication. The surgery is rough and includes 8 weeks of stay in the hospital as the child goes through twice a day physical therapy, but by the end of it, the results are unbelievable.
When Bear and I were first learning about these procedures and weighing our options, I found some videos that made us absolutely weep. Going to youtube and searching for dorsal rhizotomy is a rabbit hole I have lost days to, but I don’t know that there is even a word for what it evokes in me. Delirious hope? Terrified Joy? Mournful ecstasy? I want this so bad for him, but I feel so guarded to just be thankful for whatever each day brings.
The results of this surgery are thrilling, and hopefully that will be Atti rounding the bases one day. In the meantime we’ll keep up with these injections and rejoice in all my little hero can do.