The past couple of days have been filled with up and down moments. We are working through the challenges of the spica cast and dealing with all the things that no one told us about working with Miles in the cast.
First, before I go into those items... It has been pointed out to me by my father (on Father's Day) that we did not review why Miles had the hip surgery in the blog. For those of you who don't know (or don't remember), Miles' left hip was out of alignment. His left hip socket formed higher than his right, and the femur has been slowly moving out of alignment from the joint because of his muscle tone. When he gets excited, Miles tends to extend his extremities and thus has been gradually pulling his ball joint from the socket...not to mention that since he does not stand on his own (like typically developing/walking kids his age), he was unable to put weight on his joint helping it to seat in the the socket. This has been starting to cause problems for sitting, walking, bike riding, etc. Rather than have the ball joint actually dislocate from the socket, we elected to have the surgery now to fix the problem and to ward off future problems. His left hip socket was re-aligned with the right in his pelvis and both the top of his right and left leg were angled into his hip sockets (by cutting into the bone) to keep them from working their way out. The right leg was done so that it would match the left. So, that's what was done and why it was done. It helps that we chose to do it at the beginning of the summer so that he "should" be mostly healed for the start of school in August.
About working with the cast... It has been really challenging to find good positions for Miles as well as good ways to transport him. We've solved some of the transportation issues (the wagon is still good!), but we were still challenged by positioning him throughout the day. We pulled out his bath seat and found that we can get that set up so it is like his own personal recliner in the family room. Pillows on the couch and/or floor just were not as supportive and he sank down way too much. We still put him on the floor for train watching and other positions on his sides, and a yoga mat provides a much more comfortable non-slip surface than most other things. Two positional problems solved.
Now, on to what no one tells you on any website about spica casts (do a Google search for yourself). No matter how careful you are, there are going to be leak issues if your child is non-verbal and incontinent like ours. Now that his swelling has gone down, there is no way to "tuck in" the diapers to have a secure fit. This is what the websites tell you to try: two diapers, a small one inside a big one; incontinence pads or sanitary napkins inside the diaper; securely tucking in the diapers; changing diapers every two hours; and even using plastic wrap to protect the cast. The cast is lined on the inside with cotton. Once there has been a leak or if there are any gauze pads left in from surgery, there is a "wicking effect" that just sucks urine into the inside of the cast. The end result is that your child smells like a cross between a cat litter box and the men's restroom at a sports venue. None of the sites tell you how to deal with this. We've tried everything that has been suggested. Miles, creative child that he is, still manages to avoid the inside of the diaper entirely and get to the outside somehow. If we come up with solutions, we will post it here. Perhaps some parent out there who will have a child placed a spica cast will benefit from our challenges. We take small comfort in the fact that we're not the only ones to go through this...unfortunately, it's a little different for each child.
Meanwhile, despite the fact that he stinks, Miles is coping with being trapped. He has been playing with toys and having some quality awake time. His sleep schedule is quite off. He is not taking the pain medication regularly, so we think that is great. He still naps quite a bit, but that could be partly healing and partly boredom. The good news is that on July 9th at 2:00 pm, he has his follow-up appointment. This cast is coming off that day. He'll have an x-ray of his pelvis (maybe we could post it in the blog!). He may or may not get a new cast, but I can assure you we will not be saving this one!
No other significant news. There will be a passing of the torch between my mom and Lola and Lolo tomorrow.|
Annie
Miles' bath seat as lounge chair.
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