THE GOOD NEWS:
Hannah had a follow up with the ENT today and the good news is the infection in her neck is gone and the pocket of fluid is going away. We will return to the ENT again in 3 weeks, but if things continue this way, she should be fine. Pray that she will not get another infection in throat. We'd really like for her to be off of antibiotics for a good long time.
MORE GOOD NEWS:
Melody had her 9 month Spina Bifida Clinic yesterday. Her kidneys and bladder continue to look healthy and she continues to have no issues with her shunt. We got refills on the prescriptions she needs and plans to increase dosages at 1 year as she won't return to clinic until December.
THE NOT SO GOOD NEWS:
Yesterday we scheduled a babysitter so Kevin could come thinking this would be a monumental one. We had a whole list of questions for the orthopedic doctor as Melody has been in the Pavlik and now Rhino brace since Jan and we have yet to see the doctor personally. Last time we were there, he was not, but had given his notes to Melody's pediatrician. This gave us the information he wanted us to have, but did not allow for any questions to be answered. We soon found out he was not there, again, and more than that, he has taken another job and moved to another state!
We asked a bunch of questions of her spina bifida pediatrician and the rehabilitation specialist. They both said, you need to ask the doctor, we can't answer those questions. So, we left with the plan to schedule an appointment with the interim orthopedist. This was very disappointing as they can't run her physical therapy consult until he releases her for that. Also, they mentioned it looks like Melody will need AFO's (ankle and foot orthodics), but that is a decision the orthopedist will make.
Today Melody's awesome nurse/case worker called as she is trying to get Melody scheduled with the orthopedist. The first appointment is in OCTOBER!! They won't even schedule her appointment then as CCS (her insurance through the state) expires in Sept. We can't even get her on a waiting list to be called if there is a cancellation until they can actually schedule her an appointment in Oct., which they can't do until her CCS is extended. Needless to say, her caseworker is very frustrated.
She has submitted paperwork to get Melody's CCs extended, but that will take a few weeks. Then we can get her an appointment in Oct. and get on the waiting list for cancellations and hopefully get in earlier. I now have the doctors phone number and will call weekly to see if there is a cancellation and if they will try and fit her in. They're going to love me. :)
A new orthopedist for the spina bifida clinic arrives in September, so it is possible we will be able to see him before we could actully see the interim doctor. Melody's nurse/case worker is pursuing both options to try and get the earliest available.
From our perspective the brace is not resolving Melody's hip issues. Barring a miracle, she will probably need hip surgery, or she will live the rest of her life with her hip out of the socket. Of course, this has not been confirmed as we have not seen the doctor, but the little the ultrasound techs can tell us and from the reports, there has been no change in her hip. If Melody did not have spina bifida, she would likely be scheduled for hip surgery already. However, with spina bifida it is controversial as to whether the surgery will even help and we were told they take a more "patient" approach. If they don't think she'll walk anyway, they do nothing. God help the doctor that suggests that approach to me.
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