Round 2

We met with James’ surgeon in Baltimore last week for his 3 month follow up on his left arm and hand, and to discuss the surgical options for his right arm and hand. I had been concerned since his cast came off that his hand seemed to be puffy and swollen continually, and that he was not gaining the flexibility in his wrist range of motion that we expected. It turns out that my concerns were valid and there are a couple of things happening in left hand that will be addressed through splinting, possible minor revision surgeries in the future and monitoring things. His case is especially difficult because of how the severity of his radial aplaysia (Type IV) and his age at the time of surgery. Most children in the U.S. have this done as young toddlers. Basically his ulna bone and the wrist bones (or carpals) are not staying aligned as they should. The ulna is perfectly in place to keep his hand from regressing back to a clubbed position. But that wrist joint area is struggling. The soft tissues are still healing, hence the puffiness, and the bone to his new thumb is actually overgrowing some impacting range of motion in that finger which we want to be in an oppositional pincer grasp with the index finger as much as possible. The contractures in his fingers add another layer of complexity to the case. What this did do however, is confirm that we needed to go with a different approach for the other hand/arm.

His right hand actually has a natural joint that has formed on its own between the carpals and the ulna. Given what’s happening on the left side, it’s clear that we need to utilize that joint and not disrupt it with a traditional Ulnarization procedure. So, the Ulna will actually be broken completely just a little below the wrist, and then rotated several degrees to set it up to eventually be a 90 degree turn, thereby straightening the position of the hand and arm while still getting the ulna into the position that will allow it to prevent the hand from turning in again. The tough part is that this is a much harder recovery. It will require six months in the external fixator with a lot of turns at first and extra X-ray follow up appointments. It will be much more painful as the bone has been broken and the turns always cause a lot of nerve pain. We are hopeful that he will also get a little bit of length from this procedure as the right arm is slightly shorter than the left and of course both are shorter than a typically developing arm.

Because of the longer and more intense recovery time, we wanted to get the surgery done asap so that he could be fixator free for the summer. (We are going to hold off on any procedures on his fingers on the left hand until at least next fall.) But we also have to start Emily’s serial casting which means weekly trips to Delaware in January, so we were really hoping we could do it before then. We got word yesterday that they have scheduled him for December 6th! It’s good timing in that he can get through the initial weeks and enjoy Christmas, and since his surgeon and the orthopedic doing Emily’s leg have a good relationship he is fine with having some of James’ X-rays done there when she’s already scheduled for a visit to help us consolidate trips.

Kevin will stay home with the other three kids this time and it will just be James and I. We’re hopeful to just be inpatient two nights and get home asap. His spirits really lifted last time once he got home and the distraction from the pain was good for him. I wish he didn’t have to go through all of this, and in many ways it’s daunting knowing what is ahead in terms of the extra assistance he’ll need with daily activities, his pin care and treating likely pin site infections, but I’m also glad to get going because we are ready to have these big surgeries behind us and we can look forward to a fun summer together!

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