April 13, 2013

April 13, 2013

Praise God ... Sarah is able to move this morning. He has and continues to see her your through each and every challenge and emergency that she faces. Sarah is still weak and has not yet tried to stand, but based on past experience that is likely to follow soon. Who knows, our neighbors at home may even see her out on a short walk this afternoon ... maybe wishful thinking on my part but still a possibility. When we got her up the hematology floor yesterday evening, we found ourselves in an unanticipated "crisis". Because Sarah is immunocompromised, she has always had a private room ... until this time. As many of you know, Sarah lives in horrible pain, every hour of every day; but when she has these reactions to anesthesia, it becomes unimaginably intense. She always has sensory issues with light and certain sounds and these too also become more magnified following anesthesia. Although she often writes about watching movies, it has to be on her computer, with a colored light-filtering screen, and dimmed to the lowest possible setting; and we never have a TV on while she is in the same room because it puts off a buzzing sound that we can't hear but is actually painful to her. (Some of you may already know this, but Sarah types her entire Caring Bridge post on her I-phone because a computer is just too bright. I, her loving mom, find this to be remarkable, especially since I am texting challenged.) When we arrived on the hematology floor, Sarah's roommate had several guests and the TV was blaring. After the day she had, this was simply more than Sarah could handle. She is typically so very brave and doesn't share the fears that she may have related to her many diagnoses, but it all came to the surface at that moment. Her head was locked in a very unnatural, painful position, her body was stiff with paralysis, and she became very scared that she might stay that way ... a concern she had never shared. She did lose the use of her right arm under somewhat similar circumstances a few years back, so her fears were truly not without merit. We were so thankful that the family on the other side of the curtain was very kind and understanding, and upon hearing her cries left the room for a short time. And although there were no rooms available in the immediate area, the staff at the hospital went out of their way to arrange to move Sarah into a private room that is only used for Bone Marrow Transplant patients. We will of course continue our search for answers as to why anesthesia does this to Sarah; and continue to hope and believe that those answers may not be too far off. Last Fall, Sarah's anesthesiologist spent a lot of time talking with us after a procedure. He mentioned that Rocco Baldelli of the Boston Red Sox had mitochondrial disease, so later I googled him. It turns out that they thought that Rocco had Mito for quite some time; but upon further testing, they discovered that he has Channelopathies, which can be associated with paralysis with anesthesia. Dr. Cohen, the Mitochondrial Neurologist that we finally managed to get an appointment with was actually instrumental in Rocco's correct diagnosis, so we are hopeful that he will be able to sort some of this out for Sarah, too. And just this week, we e-mailed Sarah's Mito geneticist with questions about Sarah's paralysis with anesthesia. He wrote back and told us that that Mito and Channelopathies can present almost identically and that more recent genetic testing is showing that many suspected Mito patients have Channelopathies and that some actually have both. When we spoke with Dr. Wilson, Sarah's hematologist, yesterday afternoon, he shared that genetic testing is also providing many answers about cancer, taking the guess work out of treatments, etc. How great is that!! So thanks for allowing me this time to ramble on about the many wonders of modern medicine and genetics. I guess you now know where Sarah gets her gift of gab. We will always know that it is God who is the Great Physician, and that even our most wonderful doctors are truly only practicing medicine. (Thank you Tammy Bowles for these words of wisdom.) And thanks to each of you who follow along and continue to support Sarah with your love and prayers. You, too, are great medicine.

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