It's been 4 months since Elise's 3rd surgery for macrodactyly; 4 months is how long it took for Elise to fully recover from surgery. We got our happy ending but not going to sugarcoat it, recovery was hard. What is our happy ending? Elise has more footwear options, no new foot pain, and shouldn't need another surgery for quite a while.
It had been 5 years since her last surgery in Boston when she was 5 years old. She was a willing patient at that point, but not really involved in the discussions or decision making. This time was different - she was very much in the loop on the discussion about options and timing. The location was different as well, as one of Dr. Kasser's understudies from Boston, Dr. Katie Fuchs, moved to Portland shortly after Elise's last surgery - this has been huge for us! The decisions about what should be done and when to operate weren't cut and dry, and Elise weighed in with what she thought, and it was up to her to make the decision to proceed.
The main goals of this operation were to make any future surgeries straightforward and to give her more footwear options.
1) Stop the growth of the long bone in her foot for her big toe by destroying the growth plate (again). The main concern was that this bone was still growing after two attempts to destroy the growth plate, and continued growth could alter the mechanics of her foot and limit or complicate future options.
2) Debulking the tissue on the bottom of her foot (fancy word for remove)
3) Adjust the angle of her big toe bone (the same one getting its growth plate destroyed). The bone had been growing at a more upward angle than the others in her foot and was creating additional height which was compounding the challenges to fit in shoes. So a vertical pie wedge was taken out of the bone, which was reset with screws to heal at a new lower angle.
The operation itself was smooth. Portland Shriners was great. It felt small and friendly, the staff was all-around great. The post-op report from Dr. Katie was all good - she was really happy with the result in the OR and showed us a couple of pictures after everything was sewn up which looked like a significantly thinner foot. 1/2 day surgery and one night in the hospital was it.
The first few days at home were as expected compared to her other 2 surgeries. It takes a little time to dial in medications and routines (stay ahead of the pain train), with some bad pain during one or two of the nights. We timed the surgery to happen a few days before Elise's winter break from school, so she had two weeks to heal before heading back to school. Elise enjoyed Christmas at home and did lots of potholder making (thanks Annie & fam!) and coloring (thanks Schwerds!).
Surgery/Recovery Timeline
12/16/2021: Surgery
12/17 - End of January: In a cast - no weight bearing - wheelchair and crutches (important to elevate)
February: Boot, light weight bearing, crutches, foot infection, weekly dressing changes at Dr office - Coban wrap.
March: daily foot soak - daily dressing changes - Coban wrap - no more boot.
April - Wound healed enough to go swimming again by mid April. No more Coban wrap needed. Shoe shopping success. Yay.
Lessons learned
1) Work with the school staff earlier than you think (at least 6 weeks if possible) with preparing for wheelchair access....especially at a non-ADA school (aka REALLY old buildings). Your child has a right to go to school; don't be influenced by the inconveniences it causes staff.
2) Talk more with the surgeon about what to expect for recovery timeline. We were really surprised and concerned to see what looked like a lot of dead tissue along the bottom of her foot after her cast and dressing was removed for the first time. It looked like her foot was both mauled by dogs and then scorched in a fire. Dr. Katie was not too concerned with how things looked - saying that new skin was essentially growing underneath the bad-looking tissue which would eventually slough off. This was the moment we questioned our decision. It's normal.
3) Buy the same brand of Coban wrap you get at the Dr. office. Don't try to save money with cheaper alternatives. Doesn't work nearly as well.
4) The large incision wound along the inside of her foot healed like a zipper, slowly closing from the back of the foot moving forward. It's fine to pick out the gunk in the wound regularly.
5) Infection means there are signs of pus at the wound and 10 days of antibiotics are required. No side effects experienced.
6) The debulking has caused numbness at the bottom of her foot which we are told will improve over time. Need to be a bit careful because she won't feel it as much if she steps on glass for example.
It's been quite a journey. I think we just didn't spend enough time with our surgeon talking about recovery expectations - or the range of possibilities. Not that we would have made a different decision, just that we would have been better mentally prepared. In the end, Elise's foot thickness is definitely improved and she has more options for footwear. Hopefully the numbness in her forefoot continues to slowly improve, and we don't have to think about another surgery for a while.
Before Surgery
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