Tuesday, November 13, 2012

Catching Up, Part 1: Too Many Hospitals


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.



16 comments:

  1. I am so glad Libby is getting well, and hope the best for your other loved ones as well. SJS is scary!! I know of a TCU student who has been hospitalized for more than a month now with SJS and TEN. She has been *severely* ill, still can't see, and has a long road to recovery ahead of her. Since I've never heard of these illnesses before, it's interesting to hear of two cases in the DFW area in one month... don't you think?

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  2. Oh wait, I'm confusing you with Suzanne, aren't I? You're in California? If I mixed that up, I am sorry. But still, two cases in a month of something I've never heard before. And I'm still happy and thankful for Libby's healing!!

    ReplyDelete
    Replies
    1. Hi Tamara, we're in Sacramento area of Northern California! But happy to be confused with our Steece buddies any time - wish we lived closer for sure. Thanks for the kind words!

      Delete
  3. Oh my gosh! Your family is in my prayers. I guess when it rains it really does pour. I will be praying for you.

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  4. Anonymous3:18 PM

    Hi, I have never commented here before, but I have a friend from high school who almost lost her life to SJS! I am going to forward your blog site to her! if you have any questions she is an expert!!!!
    Glad you caught it early and glad Libby is doing better!!

    ReplyDelete
  5. I am pretty sure your Anonymous post was referring to me! Lol! SOOOOO glad to read that your little one is ok!! Yes, I had SJS which turned to Toxic Epidermal Necrolysis and spent 3 months on a burn unit. It was an allergic reaction to a medication, so I sure hope she never has that experience again. All my best to you and your family, and thank you for helping to raise awareness for an illness that so few are made aware of. Kudos to your incredible team of doctors!!! Way to go, Libby!!! You're a fighter!!

    ReplyDelete
    Replies
    1. Thanks for the note and to your friend for reach out - can't imagine the adult severity of SJS from what we've read and seen online. Very lucky to have caught it early for sure.

      All the best to you!

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  6. Anonymous8:06 AM

    Oh Gen,
    I am so sorry to hear about all the family health probs. Suz kept us informed about Libs, but had no idea about the rest of the family health goings on. Prayers for you all,and glad Libs is better.
    Texas Daddy and Granna

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  7. Charlotte6:48 AM

    Hi I have been reading your blog for a few days, your lovely little munchkins are currently 2 were I am upto. I just wanted to say I think you are a wonderful mother and you have four lucky kids. I am not a mother of multiples (though there are several sets of twins on both sides of my familiy so still could be). I have a lovely 2 year old boy but look after a 5 month old and a 16 month old so do enjoy chaotic but fun days with 3 under 3s. Am looking forwarding to reading the rest of your blog :)
    Charlotte (Uk)

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  8. What a rough stretch!! I'm glad Libby is on the mend and you finally got some answers. I can't even imagine the anxiety waiting for answers. My Sarah had a horrible MRSA infection on her face last year that took us weeks to get the correct treatment for. That was bad enough.

    Hoping everyone is on the mend and you don't have to see the inside of a hospital again for a long while!!

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  9. I often come on over here from the Steece family blog but don't often post but had to today. Poor Libby, that is really rough! I'm so glad that she is on the mend now. Thinking of the rest of your family and hoping everyone is better soon. (Love the photos with the goop -making the best of a tough situation!)

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  10. Anonymous8:57 PM

    Yikes, what a scary month! So glad Libby is feeling better, and sending best wishes to all your family members. Hang in there - I hope everyone is on the mend soon!

    -Holly in Santa Clara

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  11. I'm so sorry to hear this news Gen... about sweet little Libby and also your other family members. I hope she is feeling much better now, and that Charlie continues to get better and better each day. And for grandpa Russ to don't need to go to the hospital again.

    I'll be thinking of you all. I'm sending all my love your way from Barcelona.

    Mariona (from Spain).

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  12. I've been keeping this post unread in my Reader as a reminder to pray for your family and Libby. Hope she's doing much better! And the rest of the family too!

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  13. Saying a prayer for the whole family. Hope sweet Libby feels 100% soon.

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