I want to catch you all up to speed with Audra's "medical stuff" (and also document it for my memory's sake!)
About 3 weeks ago Audra had her ENT follow up appointment. We discussed the results of the MRI she had last month. The MRI showed that she has completely normal anatomy of her ear structures. So, she has all the "parts" she needs to hear (nerves, bones, etc). They repeated her hearing test...again...and the results were no better. Next step?? Audra will have a sedated brainstem hearing test to help determine more precisely the extent of her hearing loss. Right now, with the results they have, they would not be able to put a hearing aide on her right ear. Only her left ear shows enough response to sound to qualify for a hearing aide. I think they are hoping this sedated hearing test will show some kind of response in her right ear...which will enable them to fit her for bilateral hearing aides. Because Audra has failed sedation in the past, she now needs to have all procedures the require sedation done with anesthesia instead. So, her ENT will combine this hearing test with an examination of her ears under anesthesia and possibly ear tubes. This will give him a better opportunity to evaluate the perforated tympanic membrane in her left ear and determine when to time the repair of that. Now we just wait for a date.
Audra saw Immunology about 4 weeks ago. She continues to perplex all those who seek to "figure her out". Basically, all of the extensive lab work that Audra has already had done is not overly concerning for an immune deficiency. However, they are still concerned about her failure to grow, persistent low grade fevers, intermittent diarrhea and her lack of response to some of the vaccines she received in China. So, those vaccines have been repeated here in the U.S. and Audra will have bloodwork done again next week to see if her body has responded to them. If yes...end of story, most likely, for the Immunology department. If not...that will lead them in a more clear direction of "figuring her out".
I have had bi-weekly phone conversations with Audra's GI doctor. Audra's latest round of testing on her GI "samples" revealed that she is eliminating excess sugar, instead of her body holding onto it and absorbing/processing it. This is concerning for a malabsorption process.
She also has H. pylori...again. Or maybe it was never fully treated last time. This is a bacterial infection of the GI tract. She was found to have H. pylori while she was hospitalized in May and she was treated for it with two different antibiotics and an acid blocker for two weeks. The GI doctor is deciding if Audra should be treated again, with different antibiotics...she is cautious because Audra developed a C-diff infection last time she was the antibiotics for so long.
Tomorrow Audra will have an Upper GI study done (aka: she swallows barium and they take video pictures of her anatomy). The GI doctor thinks this may show thickening of her small bowel, which would lead them to believe that an inflammatory process is causing Audra not to gain weight.
Next step...another endoscopy/colonoscopy. No date yet.
That's all for now...and that's enough.
In other, more exciting, news...
Because one birthday party is just never enough (but especially for my girl who is celebrating her birthday for the very first time ever!!)...
Today we celebrated Audra's "last 6th birthday party". We had a little lunch party with Audra's Godmother and her two girls who couldn't make it to the Carousel Party last weekend.
Fun, fun, fun!
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