I took some time off blogging, but I'm back:)
Ava's medport went in just fine. With the exception of strep colonization at the port site, all is well. She doesn't love being accessed at all, but she's getting less terrified. Her Mitchondrial disease is starting to progress. Her liver is enlarged, her motility is terrible, she's acidotic, etc.... She's now on neurontin for chronic nerve pain (neuropathy).
She's also sweet, happy and spoiled rotten.
Her heart is showing some effects, mainly thickening of the valves. Cardiology wants her tested for Danon disease (Lamp-2). GI wants a liver biopsy. Neurology wants a lumbar puncture. I'm sure I don't need to tell anyone my thoughts on these tests. We are having a big appt with multiple specialties next month to get a game plan. If they all decide these tests are needed, they WILL be done at one time and they will get everything needed because they will NOT repeat these tests again.
Sunday, July 24, 2011
Subscribe to:
Post Comments (Atom)
4 comments:
Hugs!
Is she inpatient or out? Good for you for insisting that it all be done at once. I can only imagin what your summer has been like thus far.
Try to get some fun in if you can.
Wow, what a journey you all are on.
((HUGS))
Not great news, but she's beautiful! I agree with all those tests at once. It makes me crazy when they won't work with you, I hate putting him under all the time!
Glad to see you are back. So sorry she has to have so many tests. Hug and prayers!
Post a Comment