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Archive for the ‘mito’ 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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Last week was Home Parenteral Nutrition (HPN) Awareness Week.

As many of you know, Total Parenteral Nutrition (TPN) keeps me alive. It’s called Total PN because I receive essentially all of my nutrition parenterally – through a line in my chest that goes straight to my blood (“parenteral”) rather than through my gut (“enteral”). Fourteen hours every day I am hooked up to an IV line that delivers this nutrition. The other ten hours I am hooked up to a line that delivers what is essentially sugar-water which keeps my blood pressure and blood glucose levels stable. I am very grateful for these lines.

However, there is a very real and very serious downside to requiring parenteral nutrition. Part of this downside is that a line that constantly enters your blood system, right next to the heart, where it can be pumped throughout the entire body; this line can introduce bacteria and yeast to the bloodstream causing a very serious infection called septicemia. This describes the reaction the body has to foreign bodies in the blood stream. (“Sepsis” is the same reaction but to an infection in any part of the body.) It can involve changes in temperature, heart rate, blood pressure, white blood cell (WBC) count, and respiration rate.

Septicemia has seemed to find a friend in my body. And usually when it hits, it hits hard – bordering and even reaching septic shock. It’s scary and painful. My brain feels like it’s a ferris wheel, spinning upon itself, and nothing makes sense. And because my white blood cell count – white blood cells fight infection – are low/low-normal when well and do not seem respond to infection, we have no warning. In fact, doctors have nearly discounted my fever numerous times because of a lack of WBC response only to find out my body is going full-out septic just hours later.

 

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12 days ago our world lost a princess. 10 days ago we bid her farewell. 5 days ago she was laid to rest. And today? We still struggle to comprehend what has transpired.

Eithene was just short of her 5th birthday when she passed. We take solace in the knowledge that she is no longer in pain. No longer struggling to breathe. No longer hooked up to the myriad of tubies and machines that kept her with us. Eithene is free.

Ultimately, the pain comes not from the loss of Eithene – we are happy for her newfound peace – but from the chasm left in the hearts of those who loved her. Although it may offer little alleviation, we offer our hearts and love to mom Jessica, dad Sean, brother Gabriel, aunt Jill, and the entire Shriver-Hilliard clan. We further keep her best friend 6 ½-year-old Matthew in our hearts as he struggles with the loss of his nearly-lifetime companion.

In order to lessen their current ache, friends of the Hilliard family have taken up a collection of Visa giftcards in order to support the family during this difficult time. If you are interested in contributing, contact me at cnhertzog@gmail.com and I’ll direct you to the proper outlet. You can also make a direct PayPal donation here.

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