Here are some of the details of Ava right now, 2 months after having 4 of the 5 nerve roots that provide motor function and sensation to her arm completely avulsed (pulled out of spinal cord).
She is completely comfortable. Doctors think perhaps her nerve pathways weren’t developed like an adult’s might be, so she has none of the crushing, burning sensation that often accompanies injuries like this. A HUGE answer to prayer for us.
The one nerve that is still intact (her C5, which means it comes from the space next to her 5th vertebrate) is one that primarily feeds to her shoulder. In the last month, Ava is able to do a bit of shoulder abduction, which I think I would best describe as similar to making a snow angel. When standing, Ava’s arm used to just hang absolutely limp, but now she is able to lift it about 15 degrees out from her thigh. Nothing functional for sure, but a good sign that the C5 is working and one less piece to try to fix.
Ava’s morning routine is this…I take off a brace that is actually supposed to be used to immobilize a shoulder, along with a hard plastic splint that goes from the middle of her forearm past the tips of her fingers. Then, we do range of motion exercises for 10 minutes. I am trying to make sure her arm is still able to move if her surgery is successful. Then, I give the space between her fingers a dusting of antifungal powder to keep them from getting so sweaty. I put Mederma, an anti-scarring OTC, on her two sites with stitches. Then I put some essential oils on her that might be good for nerve repair because I am an optimist and figure it is worth a shot.
Then, I help her get dressed and put a sling on her that was designed by a man who had a severe brachial plexus injury many years ago before surgeries were ever successful, and he needed something to wear when he trains for triathlons. I really like the sling and finally received a neoprene splint (Benik BD88) for her wrist and thumb, so now we add that too.
At night, it’s the same routine with switching back to the other brace. I sometimes would let her be without the brace for a bit after her shower but lately she has been into spinning in circles and dancing so now I get her in her brace quickly again. It is important to protect her from breaking or overextending her wrist and also, to not have so much much weight pulling her shoulder out of its socket.
I may have been misleading in a previous post, which I realized after some face-to-face conversations. Ava has absolutely NO hand function right now. Her entire arm hangs at the side and her sensation stops at about her bicep.
Ava goes to therapy right here in Worthington 3 times a week. Usually, the physical therapist tapes her shoulder to prevent subluxation as much as possible, to keep her shoulder up and back. We will probably start doing some electrical stimulation soon to help her develop her shoulder abduction. Ava also does occupational therapy to develop her good hand. Once a week, we also throw in a speech therapy session and let me tell you 3 therapy sessions in a row with a 4-year-old girl while caring for her baby sister Violet can get quite exhausting. I am just so thankful that we have these services in our hometown.
We will do a surgery in August. We are still undecided between Mayo and Cincinnati but will choose soon. I scheduled a surgery at both so our spot is held.
Waiting, waiting, waiting is such a trial in this life. We could all use more patience. This surgery is ideally performed between 3-6 months and that is probably just too much time to give parents to weigh the decision, research and compare surgical plans. We certainly aren’t taking this decision lightly.