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Archive for the ‘Boston’ Category

There is nothing like looking, if you want to find something.
The Hobbit, JRR Tolkien

I had to look back at my last post (which was just six short days ago) because so much has transpired over such a short time. Although there were some frightening periods, we have much to be grateful for. The most important is your support. It means so much to me to read notes of love and encouragement. I could not make it through those difficult times without it. Thank you, thank you, thank you!

I’ll try to go through looking and the finding of the last six days as methodically as possible, but there’s much I don’t remember, so I apologize for the holes.

Just minutes after I posted on the latest saga with the positive news that my fever broke, I spiked another fever at 102.3. Despite 2 different antibiotics. Despite round-the-clock Tylenol. Although the fever was miserable, it seemed the treatments finally took hold on Tuesday morning and I went fever-free for just over 24 hours prior to discharge. During that time, we saw the Infectious Disease (ID) doctor who told us the bacteria grew out as MSSA, or Methicillin-Sensitive Staphylococcus Aureus, which is far more favorable than the nasty MRSA, aka Methicillin-Resistant Staphylococcus Aureus. We thought we were in the clear. Although he clearly still wanted my port removed, I was able to doe-eye the hospitalist into allowing us to try to save it so that I could swim and enjoy the last three weeks of summer. We got our discharge papers on Wednesday afternoon and my home health nurse met us at home for a three-and-a-half-hour review.

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One year ago, a very special little girl came into our lives. Eithene (pronounced Eth – eh – nee) Rose was a 4-year-old beautiful ball of spunk who, like me, lived with a combination of Mitochondrial Disease (an neurometabolic disorder) and Ehlers-Danlos Syndrome (a connective tissue defect). She was also born with numerous birth defects which are together known as VACTERL Association.

Over the last year, Keith and I have visited with Eithene and her family (mom Jessica, dad Sean, brother Gabriel, and Aunt Jill) whenever we were in Boston. We have grown to love them. We couldn’t leave a single store without Keith seeing something that reminded him of Eithene or one of the other mito kids we regularly visit. Eithene’s story, however, is somewhat unique. Over the time that we’ve known the family, Eithene has only left the hospital for about five days last July. Other than that, she’s mostly been in a room on the ICP (Intermediate Care Program, a step-down of the ICU) at Children’s Hospital Boston. We’ve visited through numerous infections and medical crises and seen the strength she exhibits on a daily basis. Her mother’s love and faith have been unwavering and inspiring. Not only that, but mom Jessica has helped me through a large number of my own medical crises.

Saying "hi" to True

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I’ve been home for nearly two weeks now. Recovery has been slow and has sapped me of most of my excess energy so many apologies. Because there’s so much to cover – and I’m having difficulties organizing my thoughts – we’re going to go about this bullet-style.

  • I’m home. I was discharged with a four-week course of IV Vancomycin (a very powerful antibiotic) at a very high dose. Because we never got those sensitivities back (i.e. what bug we’re fighting and what antibiotic is best to fight it) and my reaction to the infection scared them (though I assure you, it did not scare nor surprise me or Keith), the doctors are playing it safe. I guess that’s what they do best. I was also on Cipro (another antibiotic), but I have finished that course.

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