An Uncertain Path

Apologies in advance for a long and wordy post today. There is a lot of complex information swirling in my brain tonight, and I've tried to write it out as clearly as I can!

The last time I blogged about M's feet, the news was pretty hopeful. When he went into casts before Christmas, his feet were essentially in the fully corrected position, so we expected that they might be his last casts. Because of the holidays, he was supposed to keep those casts on for 3 weeks.

Unfortunately just before the end of that period, the circulation in his toes slowed to the point that we needed to remove the casts early. Every time we remove the casts, his feet and lower legs rapidly swell and stiffen, which meant that when we arrived for his follow up appointment his feet weren't flexing up to the hoped for 90 degree angle. The verdict was back into casts for 2 more weeks.

This time we kept the casts on until his appointment. We were returning to his original doctor this week, in part because it was time for further follow up on his feet and also because we had some concerns about his progress since the tenotomy and were hoping for a second opinion.

The appointment today began with an x-ray of his hips. Poor little guy was very unhappy about that (it didn't help that the appointment time was almost exactly naptime, so he was tired to start off). And he's gotten very strong, so it was a real challenge to get his legs into the correct position for the pictures they needed. It took both of us holding him down, and even at that we had to repeat some images because he was so wiggly!

Then once we got him calmed down it was time to head to his least favourite place, the exam room at the orthopedic clinic. I'm sure no one there believes me when I tell them that he is generally the happiest baby ever. In any other location, he pretty much spends the entire day laughing, but not in the clinic.

His doctor started with the hip x-rays. The good news is it's glaringly obvious that his right hip has grown and developed perfectly (we expected that, it was pretty clear previously). The left hip was a bit more ambiguous. It's possible it's fine, but it isn't clear, and he is getting old and big enough that if it isn't fine it could lead to long term problems. A second doctor was called in to consult, and the decision was made to pursue a more definite diagnosis and possible treatment if there is a problem.

This will require a procedure called an arthrogram. They will sedate M and inject dye into his joint, and then do further x-ray imaging to get a clearer view. Best case scenario is this test reveals that everything is in fact fine, and that will be the end. If not, though, they will do any surgical correction needed then--the most likely scenario is that he will need another tenotomy, but this time in the hip. If any correction is needed, they will then put a spica cast on him while things heal--probably 6 weeks but possible longer. This is essentially a full body cast, that goes from torso down past the knees.

Obviously if this is what is needed we will do it, but I am holding out a bit of hope that we can avoid that. By the time of the procedure (likely in March, unless the surgeon has a cancellation sooner) M will be about 10-11 months old, and I just can't imagine him having his movement that restricted for that long. Mojo, thoughts, prayers, etc. would all be appreciated!

Then we came to the discussion of his feet. The news there is mixed--they are at the fully corrected angle, and can be fully flexed to 90 degrees. But there are still creases on the back of his heel, which usually resolve when the foot is fully corrected. This may be why the doctor we have been seeing was continuing to cast even though the angle was right.

However, the doctor we saw today shared my concerns about the swelling and damage to his legs. She was not comfortable putting new casts on today, so we were sent home with instructions to do a lot of massage and stretching and spend some time in the water to try to improve his circulation and bring down the swelling.

The question is where to go from there. Apparently in some cases like M's, continuing to try to flex the foot further can actually cause damage to the shin. It's possible that his foot is in a good final position and he is ready to move into orthotics. It's also possible his Achilles' tendons need to be released again--the good news is the two surgeons could coordinate this and he could have that done while he is already in the OR for the hip procedure. If that happens and he is getting the full cast, it would actually be extended down over his feet to hold them in place as well.

The doctor herself wasn't sure yet what to recommend, because his case is so unusual. Since nothing was going to happen today anyway, we scheduled a follow up appointment for Monday to give the swelling a chance to come down. Hopefully that will allow her to give us a better assessment of where things are and what to do next. Right now she is thinking she will do at least one more cast at that appointment, perhaps just to hold us over until he gets some form of orthotic (apparently he may get something different from the traditional "boots and bar" we have been expecting).

So that's where we left things today--no answers, no clear plan, and a lot of questions. We know we are in good hands and getting excellent care, and M is a strong and resilient little guy who will bounce back from all these setbacks. But it's still pretty frustrating in the moment. (The bright spot getting us through right now? A few days of a cast-free snuggly baby, who is going to thoroughly enjoy 4 days of splashy baths, kicking his feet, and wearing footie PJs.)


Fuzzybunny1978 said…
Of course he is a happy go lucky kid. He's got great parents and an awesome big brother.
Can't say as I blame him for being unhappy about the place that keeps making his legs stiff.

Sending lots of healing energies in hopes of happy left hip.