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Catching Up, Part 1: Too Many Hospitals

Posted Nov 13 2012 10:26am

Don't even know where to start here.  The last four weeks have been a blur and a bit overwhelming.

Kids visiting Charlie yesterday
  • Gen's cousin, Charlie, was in a horrific motorcycle accident and spent the last few weeks battling for his life in the ICU.  Somehow, he continues to beat the odds and battle each day.  
  • Great Grandpa Russ has been in and out of the hospital for weeks, dealing with a variety of serious issues.  Luckily, he's resting at home and much improved as we speak. 
  • Aunt Paula has been suffering from Meniere's Disease  and underwent brain surgery. She's been a trooper and is now recovering well at home. 
Our thoughts and prayers have been with them all, especially Charlie and his family, during this difficult time.  In the midst of running back and forth to the hospitals, we found ourselves beginning a string of visits of our own with Libby.

The day we got back from vacation sans kiddos (more to come in Part 2), Libby had developed a small stye on the outside of her eye.  Nothing big, just something we noticed and watched become irritated our first few days home.  The next morning, a circular shape formed - and she was excused from school to go check out what we thought was ringworm or some contagious rash.

Fast forward 3 days, two additional trips to the doc, and still the same diagnosis:  Not contagious, not ringworm,not staph, not pink eye, not eczema, etc. The plan? Just let it play out and should disappear with some topical treatments and antibiotics.

Fast forward two days, we wake Libby up to find a HUGE spread of the rash and circular sore-like formations on her eye, nose, neck, and upper chest.  She was in severe discomfort, crying about how badly they itched and hurt.  Strangest part was none of the other kids showing similar symptoms.

Right to the doc we go again - where our awesome Pediatrician brought in colleagues, referred out to specialists, and conferred for a few days trying to figure it out.  Our doctor has 30+ years of experience and has been there for every scary moment (especially some of the near-fatal scares with Russ as an infant) as a calm and unwavering influence.  When he looked at Libby and remarked "Uh-Oh, that's not good..." we knew it was ok to worry a bit.

Two more days, a day in the ER, an admittance to the hospital, and we finally received some answers.  The official diagnosis was early onset  Steven Johnson syndrome , combined with an unknown fungal strain never....seen...before.  The doctors conferred with specialists across the country, and were a bit geeked out over Libby's condition (not happy, just fascinated seeing something new.) While we were scarred to think about the possibilities during the unknown period, it was comforting to get a diagnosis and treatment plan started that showed quick improvements. However, to say we were scared to death would be an understatement.

Photos below show the progression much better than any written description could.


Our Little Libs before.... 

Starting to spread and circle up...

Back at the docs 2 days later... Stumping EVERYONE

Ok...it's getting scary now...

Hangin' at the ER - Crushing Angry Birds

Admitted to the hospital 

"Suffering"through solo time with Mom...

Just a few days after he was released from the same location -
 a nice visit from Grampy Russ

Super lucky to have our friend Sarah work at the hospital pediatric unit.
Lots O' Fun and entertainment whenever she's around!  Who doesn't like making "Goop?"

Hard to tell which one is the kid sometimes

Lookin' MUCH better

Don't think there's anything worse than not having answers and watching your child continue to suffer. Thank you to all of our family and friends across the country for the prayers and love. Thank you also for the continued prayers for Gramp, Charlie and Paula - as we know this mild setback is nothing in comparison.



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