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juillet 08, 2005
Medical Test Marathon
Well the testing marathon starts tomorrow at 8:30am (I so do not do mornings). Maddie will have an upper GI which is a test where they watch her esophagus while she's drinking a thick liquid that has barium in it (it's like x-ray video). She has had this test before, last Nov., it was the one which pretty much diagnosed her heart defect. So I'm not sure what they will be looking for (though it's possible that scar tissue from surgery could have closed back around her esophagus). I think at this point my ped is just looking at everything that could be possibly linked. Maddie will also have another swallow study (they watch her eat with the x-ray video). The swallow study looks at how her foods or liquids react when she swallows, do they go into her trachea, do they almost go in her trachea, is the epiglottis doing it's job, etc. I also think we will have a cardiac MRI (which she's never had) to better visualize her heart and the surrounding structures, this will tell us definitely if she has scar tissue that has reformed her "vascular ring." After this MRI, I will consult with her cardiothoracic surgeon, Dr. Kogon. And, on July 20th I have an appt. with a pediatric ENT (ear, nose, and throat specialist). And, my ped is supposed to be talking with a neurologist to see if there could be something wrong with her brain (I suppose it has to do with her cough/gag reflex not getting the message in time to prevent aspirating). Did I mention I'm taking organic chemistry? =) I've also decided that everyone who watches Maddie needs to be CPR certified (which currently leaves me unfit to care for my child). We may never know why this happens with her, so best thing to do is have everyone who cares for her as prepared as possible in an emergency. My ped did say that the chances of this happening twice to a child is pretty much zero, so hopefully a reason will be found. Even tonight she started to gag on banana... I thought that the problem was with her not chewing properly, but she was discharged from therapy for that (meaning, according to the experts, she chews and eats fine). This apple thing didn't really have anything to do with chewing, it was a reflex thing I think, or linked back to the heart defect. I don't know. As her mother I have slept little trying to figure it out and fearing for the next occurrence. I just want to be a good mom and not let her down. I want to get to the bottom of this and really advocate for my child. At the same time it's so hard to see her go thru all these tests. It's no one's idea of fun. Biggest thing is that this "condition" is life threatening. A big enough piece of food (or food mushed together) could get stuck and totally block her airway. I pray that will never happen, but it's certainly something I have to take very seriously. Well I need to get to bed, sorry for the ramble, I'm trying to process a lot of fears, thoughts, and emotions right now, which is difficult for me because I'm not an emotional person. So thanks for listening...
Posted by carriec at juillet 8, 2005 01:53 AM
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Comments
Ramble away! It's your blog! I can't tell you not to worry, but know that God is the best parent ever. He not only takes care of Maddie, but He takes care of YOU. So I will keep Maddie in my prayers that God will 100% heal her, but I'll keep you in my prayers that you will be calm, and at rest, that you will be able to put your worries at the foot of the cross.
Let us know if you guys want to get together for some hands on prayer for Maddie. We have a couple in our church who had their premie healed from spinal meningitis when the docs said she would be dead in 24 hours. If you guys ever want to our church has seen lots of healings, and take children very seriously. Especially if you need a faith boost. We love your family. May God protect you all!
Posted by: katiek at juillet 8, 2005 01:36 PM