A Heart Like Noah's
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Noah was diagnosed at the age of 4 with a rare vascular defect. His aorta was crossing through his chest, crushing his esophagus and trachea. He has undergone 3 surgeries- the most recent on March 26 at Cincinnati Children's. He still suffers from reflux, tracheomalacia and asthma.

His sister Abigail also has asthma as well as chronic abdominal pain and chronic sinus/ear infections.

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  TUESDAY, JANUARY 06, 2009 09:45 PM, CST
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DR. K WANTS A MODIFIED SWALLOW STUDY...

Which, in all honesty, is what I expected. He was supposed to be scheduled for an esophagram (barium swallow with liquid barium) to get a baseline image of his esophageal structure but, after notifying him of Noah's recent choking episodes, Dr. K feels a modified swallow would be a better test. A modified swallow study is similar to the barium swallow but barium coated foods are swallowed instead of liquid and video fluoroscopy is used instead of still images. So, it is no more invasive for Noah, which is good.

Noah is fine with the idea of a swallow study. He has had nearly a dozen of them in his life, so it is a familiar test, at least. And, it is completely pain-free and without anesthesia, blood draws or injectable dyes. So, he has no problem with doing the test.

However, Noah is well aware what CAN be seen on a swallow study and he is very aware of what that may mean for him. He was very upset tonight because he fears that, if the study shows anything unusual, he will need additional surgery. The truth is, I don't see how another surgery of any kind could possibly do any good at this point. I explained to him that while I can't guarantee he will never have another surgery in his life, I certainly am not planning for surgery any time soon! Even so, he is a worrier. He was consumed by tears and tortured by a plethora of fears and "what ifs." I am not the best person to tell him not to worry about the what ifs. But, I told him just that, nonetheless. He was not receptive.

I don't know what breaks my heart more: the thought that there could be anything unusual in his anatomy after all he has been through, or his extreme, if not justified, fear of the unknown. He told me tonight, with tears streaming down his face, that he "hates" this part of his life. I hate it for him. I told him God must have a reason for continuing his journey; this did not appease him. He is not concerned with God's reasoning right now. He does not want to live out a witness. He wants to leave medicine and doctors and tests and treatments in the past.

Please pray for God to give Noah peace and comfort in the coming days. Please pray that this one test will provide the answers sought by Dr. K so that he will not need to endure anything more. And please pray that if anything at all is revealed through this test, a clear and simple solution exists. I know that is a lot to pray for, but as we all know, no prayer is too big for our God!

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Any kind or encouraging words you have for him are appreciated and priceless. Above all, we value your prayers and love. Noah has a "buddy map" and checks every day for new names and faces, so be sure to sign!

www.buddymapping.com/maps/noahswarriors

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EMAIL AUTHOR
blessedwithnoah@yahoo.com

HOSPITAL INFORMATION
Cincinnati Children's Hospital
3333 Burnett Avenue
Cincinnati, OH 45229
United States