The test today did not have the results we hoped for. We now have to cath every four hours when she is awake. I am glad she is on her prophylactic antibiotic because of her history with UTIs. Although it's going to take more time and put her through more nonsense than a poor thing should have to go through, one positive we can say is that hopefully it helps us qualify for the medicaid waiver since she has even more medical need for qualified care now. They are also starting her on Ditropan because of her bladder spasms. This medication is the reason for the increase in cathing. I understand that they want to protect her kidneys, those are pretty darn important, but the side effects really have me concerned. The first is a dry mouth, which I guess if it dries it up some, that wouldn't hurt since she drools SO much, but if it's too dry, that is very scary since she doesn't even drink anything by mouth right now. Overheating is another side effect, just in time for toasty summer. Of course there's also the side effect of her maybe not voiding anything on her own, which right now she can void her entire bladder on her own. Then there is the whole poop issue. We've never had the common SB issue of constipation, but this medication causes it in many of the children I've read about. It seems like we are solving one problem but creating several more.
To end on a happy note, Callista has realized she has a tongue. She spent most of today sticking out and wiggling her tongue at us! :)
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