As most of you know the last day of appointments was a whirlwind kind of day. Since her VCUG showed she now has grade 1 reflux we set up an appt to see the Neurosurgeon to discuss detethering surgery. He was pretty convinced she needed it by looking at her chart and current symptoms, but that was before her Urodynamics came back normal (for her diagnosis). He went ahead and ordered a head CT and shunt Xray series which also came back normal. He wanted to rule out any shunt failure.
We are very very thankful that all the tests came back within normal range, but still confused on what comes next. Do we get the detethering surgery and hope it helps the reflux from getting worse? Or do we wait it out and see next year if has gotten worse or until her symptoms go haywire? Like anything else it can get better on its own or get worse and chance not being able to go back to grade 1 or none at all. I am just concerned that her pressures in her bladder are normal with her current cathing regiment yet she still leaks urine throughout the day,now has reflux after never having any sings of it before now, and still getting chronic UTIs. This all started happening in December when she was not having these concerns before then as consistent as she is now. I am sure this is confusing for most of you, but feels good to write it out and let me brain process it lol. The detherting surgery is a difficult one that we don't want done unless absolutely needed, so we are making sure we are getting as much info as we can to educate ourselves and feel we have done everything we can to avoid it if possible.
I put an email into the neuro nurse at cincinnati to get their opinion and we will meet with our Neuro next month if not sooner to discuss options.
I am upset with myself that I was so flustered when meeting with the Urologist at Cinci that I forgot to ask more questions about surgery and other options to make her dry between caths. They didn't really give us much to go on other than wait out the new bowel regiment to see if that helps. The docs think she would be a good candidate for the Malone surgery later down the road. (http://www.cincinnatichildrens.org/service/c/colorectal/treatments/appendicostomy/)
Lord willing we can get clear answer/guidance on how best to help her little body obtain the most function possible. Life with Spina Bifida is always changing and in the grey area, but thankfully we serve a God who has her whole body and life in His ever faithful hands.
Ephesians 3:20
Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us
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