When we began this journey 3 years ago after Ava’s accident, the head surgeon at Cincinnati Children’s informed us in a very serious tone that these kids are not of the “in and out” type. He said that his patients need to be cared for by the team until skeletal maturity. I suppose for a girl would be somewhere in her teenage years. For Ava, at least another 6 years.
The prognosis from yesterday’s appointment was this: wait another year. Tough news to hear. This recommendation came after they had Ava show them her full range of motion and how much strength she had within those various movements.
It works like this: every appointment, the whole team (like 5-6 of them plus a few students) comes into the room. It gets to be a pretty big party when our whole family is in there too! The head therapist gives Ava a sucker and has her try to hit it here, swing at it there, etc. The therapist and surgeons start using terms like “maybe a 2 for triceps, moderate abduction”, and the nurse, Melissa, is typing furiously on her keyboard. The team has tried the last couple of times to get a feel for sensation in the different areas of her hand, but Ava doesn’t cooperate with that at all.
After their observations, they recommended waiting another year. I think they know me well enough by now, to know I wasn’t going to start packing our things up and allow them to leave the room so quickly. I think they secretly refer to me in the hallway as the “Million Questions Mom”.
I wanted details about what things are likely in store, and when these things will happen. They told me they normally wait 4 years after the initial surgery with babies, and may wait five years with Ava since she was older at the time of her nerve transfers, and her nerves have to regenerate across a greater distance. At that point, they anticipate 3 procedures. They said they haven’t for sure decided yet if they prefer them done in one day or at separate times, but another year of operating and they think they will know what is best for Ava.
The first is a forearm osteotomy which involves cutting one or both of her bones in her forearm and resetting the starting point from which she pronates or supinates(like rotating her forearm upside down and right side up). She wouldn’t get more range of motion, just a new starting point — that is why I am always stretching this muscle, even in public. I don’t want her to even lose half an inch of rotation. Her supinators have kicked in big time and overpower her pronators so, right now, her right hand is always palm up. We live in a pronated, palm -down world when one considers driving, deskwork, anything. Risks with this operation are high for infection, and if done too early, the resetting can be “outgrown”.
Second is a Green transfer. I guess the neat thing about inventing a surgery is that it may be named after you! The Green transfer would hopefully provide her with wrist extension. That means the ability, if her arm is resting on a table, to draw the hand up against gravity. Currently, Ava has no need for this ability as gravity naturally extends her wrist, but if she had the osteotomy, she would really need this. Lastly, the Zancolli procedure is a tendon transfer to also help with pronation and maybe finger flexion. I have lots of reading and researching ahead of me!
To be honest, part of me wants to contact Mayo and Wash U in St. Louis (two places we initially visited but decided against in favor of Cincinnati Children’s) and visit with their hand surgeons again for better options or at least reassurance we are on the right track. I honestly think if I quit being in contact with our team in Cincinnati that I would walk into my home sometime and they would all be sitting around my dining room table, ha reminding me of the importance of following through with them, not just for Ava’s sake, but for future patients that have traumatic brachial plexus injuries! I do feel in my heart that I can be confident in our current team, but I don’t like the idea of missing anything.
The head surgeon when we began this journey was Dr. Yakuboff. He has since retired and I miss him. The team now laughs that retiring was the hardest thing he ever did. I guess when he started cutting back on his hours at Children’s that he couldn’t help but to spend those extra hours volunteering at the Shriner’s hospital with burn victims and brachial plexus kiddos. I am certain he remembers Ava but doubt that he remembers the exact conversation when informed me that this recovery would take years and years. I think I should send him a card with a photo so he can see her progress. It can be hard for me to see in the day-to-day how far she has come, but I am sure it would make him smile to see her now.