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juillet 21, 2005
Maddie's Anatomy
OK, well...unfortunately the MRI was somewhat inconclusive as to the source of the aspirations. Her heart looks really good and there is at this time no need to do thoracic surgery again, yeah, (no really obvious scar tissue that has reformed the ring around her esophagus and trachea). The MRI did show, however, that her trachea is still very compressed (but that's expected). And we know from the upper GI that her esophagus is still compressed by 50%. So, the current theory is that there is either scar tissue that is compressing the esophagus, or that the esophagus has not bounced back, so to speak, from the heart surgery. Either way, the docs are thinking that what we will need to do is stretch the esophagus out. This is a surgery done at the hospital and that is all I know right now; I have an appt. with the general surgeon (the same one that got the apple out) on Aug. 3rd. Now, in theory, this esophagus narrowing shouldn't cause her to aspirate, but, as her pulmonologist said, she has had an unusual presentation for a very unusual heart defect, so she kind of throws all norms out the window. He definitely thinks the esophagus being so narrowed could be causing her to aspirate and he's the lung guy so I trust him. Before we proceed with the esophagus dilation, we will do another "swallow study" (they watch her eat under x-ray) and see if that comes up with anything. If that doesn't show anything (her previous one was normal) I think we will proceed with the surgery on the esophagus. Unfortunately we don't know what her esophagus looked like in say March to be able to compare with now. If we could we may be able to more accurately say if it's either scar tissue or just that it hasn't stretched out. For now I'm thinking (because she had no problems for around 7 months) that it's scar tissue that has constricted her esophagus again and it's having a constricted esophagus that for some reason causes her to aspirate, remember the chicken aspiration that happened last October, the only thing really substantially wrong that was related was the esophagus being narrowed by 70%. So, we're only looking at a 20% improvement. We did see an ENT guy today and there is nothing wrong with her vocal cords or anything else in that area. So, as of now, she's still on a strict puree diet, and she's taking two breathing medicines (Flovent and Atrovent; her lungs weren't a big fan of having something acidic in them and for some reason she's been coughing a lot when she's eating). We are waiting on the swallow study and we will probably go back to feeding therapy to see where she's at with that, just make sure she's doing as well as she was the last time we were there.
Thanks for your thoughts and prayers!
I tried to upload a picture from her MRI (we have all this great video and pictures of her MRI on CD-ROM) but was unable to (I guess it was too large and I couldn't reduce it enough). Anyway, you can go to carepages.com page name
mcaudle to check it out.
Posted by carriec at juillet 21, 2005 02:49 AM
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