- In May, my daughter will have an approximately 3 hours surgery where the doctor cuts her bone and attaches an "external fixator" from her thigh down onto her foot. She will be in the hospital for approximately 3-4 days.
- As the bone naturally tries to grow back together we use the external fixator to separate the bone, 1 mm. a day for 50-70 days straight depending on how it is going. It takes 10 days to get 1 cm. of length. It is "easy" to get 5 cm. and I am hoping we can get closer to 7 cm. than 5 cm. The more even her legs are the more comfortable she will be down the road.
- She will be in a wheelchair during the lengthening process.
- Once we are done lengthening, she will have a less extensive surgery to remove the external fixator above her knee and on her foot, just leaving the external fixator on her lower leg while the bone consolidates. This takes double the time it took to lengthen. For example, if we lengthening 5 cm (50 days), then it consolidates for 100 days for a total of 150 days. If we length 7 cm., (70 days) then it consolidates for 140 days.
- After the lengthening is over she will need to use the leg. She will have a walker and at times still use the wheelchair. Eventually, it looks like kids get back to doing anything they did before- they just have something on their leg. I found some great pictures to show my daughter.
- She should have the 3rd surgery, where they remove the whole external fixator anytime from October to December. Of course it is not an exact science and there are many variables. I have heard sometimes you have to back off the lengthening.
- She will use crutches the first couple of weeks after she gets the whole thing off.
- The process requires many visits to the doctor, x-rays to check on the lengthening and consolidating, and physical therapy.
- The pin sites from the external fixator require daily cleanings. There is high risk of infection so antibiotics may be required during the process.
- I am still looking into the best way to clean the pin sites.
- There will be scars from the pin sites.
Saturday, March 24, 2012
Expectations
As of March 24, 2012, we are just beginning this process. This is what I have been told to expect...
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Great information Jennifer! My daughter and I are going to meet with Dr. Standard with my granddaughter on May 2 to determine a plan for her. She is only 5 months old so we are just starting out. This information has been helpful already and I look forward to following it and learning how I can best support them in the road to come! God Bless!
ReplyDeleteHi Jennifer...I'm very happy to have found your blog...My son is 12 and we are on the waiting list at BC Childrens Hospital in Canada. Eventually it will be our turn to start this process, but the delays in surgery here are very frustrating. I look forward to following your journey.
ReplyDeleteLisa Ferraro
Kamloops BC
Hi Jennifer. I'm really happy the process went well for your daugther! I just wondered how long time does the process take and is it a lot of risks? Will you be able to walk, run and do other forms of activities after the surgery?
ReplyDeleteDoctor said with a 6cm lengthening it can take a full year after removal to fully recover. We are at that point now and regression has just hit with her ankle but overall I would say yes to the walking, running and activities. The biggest risks are the typically inevitable infections while the fixator is on. For every day of lengthening, 2 more days are required for the bone to consolidate. e.g. she lengthened 6 cm so it was 60 days of lengthening, then another 120 of consolidation, then additional PT to regain mobility.
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