Sometimes you just have to say WTF?..
While giving Cam a shower this morning, Robin noticed that her back seemed to be quite swollen around the incision site. After a call to the neuro-surgeon and a trip to the pediatrician, they have decided they are concerned with the possibility of a CSF leak. They have put her on STRICT bed rest and she is to stay on her stomach for the next 3 days with a pressure dressing on her back. The hope is that it will resolve itself and close whatever leak may have developed. If not, we will be headed back to the hospital and OR so that they can repair the leak in her back.
More to come....
Do you know other families with ependa? I know at least a couple. One girll iving with it and one is terminal since sept. I just thought of a few more too. If you want me to give you some sites coles/cb/cp I'd be happy to do it. Hope Campbell is resting well hugs
ReplyDeleteHugs from another Gma flying to ME.
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