These are the entries from the Carepage, for those of you that can't make it over there. I will post updates as they are given.
This is the first entry, from May 17, 2005:
Hello, everyone. As most of you know, it's been a long, nightmarish week here at Children's ICU. The miracle is that Sam is still with us, and is making small improvements each day. I'll begin this with a little background, then will try to update as often as I can; please feel free to leave messages. The support of our family and friends means so much to us.
Background: After enjoying a wonderful first Mother's Day, Sam had an uneventful Sunday evening; she skipped her nap, and fell right to sleep that night after a bath. She'd had a cold since earlier in the week, w/an occasional low-grade fever and runny nose. Nothing major. I called the ped's office a couple times, but they assured me that it was going around, all the kids had it, etc., etc. Monday morning was a different story; she had a high fever, was vomiting, and was lethargic. In short, she wasn't herself at all. Ped's office still said these were the kinds of symptoms kids were having--which was, and still is, true--but we'd never seen Sam like this, and we took her to Mercy Clermont's ER. They brought down her fever, and tested for a couple things, but found nothing--but then a small rash started to develop. It was just a few small marks in a couple places. We also found out the week before that Sam has a platelet disorder, and this concerned the ER doc since it's a rare disorder. He decided to have her admitted to Children's, and we arrived in their ER early that evening. Immediately, they knew something was wrong--the rash had worsened, and they suspected it was meningitis. They told us it was unlikely she'd survive the night, but luckily, she's strong, has tons of folks praying for her, and is under the care of excellent doctors. The diagnosis: meningocoxxemia, w/purpura fulminans. (As many times as I've seen the words written down now, I continue to screw up the spelling, but those are close.) She has the neiserria form of meningitis, which is the most serious. About 20% of us carry the bacteria in our noses or throats, and suffer no ill effects from it. Unfortunately, it enters the bloodstream of some--Sam being one--and causes rapid, aggressive infection and damage. There is no rhyme nor reason--simple bad luck dictated this. It's unrelated to Sam's albinism or platelet disorder.
Moving on to today: the doctors and nurses are amazed that Sam is still w/us, and continuing to make small strides. She's on dialysis (though they hope the kidneys will come back), a feeding tube (she had a BM, which is a good sign), as well as a breathing tube, and she's been receiving blood products. They are trying to wean her from her various tubes--her lung and heart function is good, her bp is stable, and though she hasn't had a CAT scan yet, she grimaces, flinches, coughs and moves her eyes a lot, and they have every reason to believe the brain is okay. They are removing fluids from her body, so the swelling is starting to go down, and a doctor from Shriner's (pretty much next door) is coming to see her tomorrow; if all continues to go well, she will be transferred there, so they can deal with the effects on the skin and limbs. There have been so many doctors and so much information, and I'm likely leaving some things out, but that's the gist of where we are right now.
Thanks, everyone, for your prayers, support, phone calls, visits--we are indeed blessed w/family and friends. Keep Sammy in your prayers, as we have a long road ahead of us. She's such a strong little girl and has been through so much in her short life.
Jessica & Rob
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Huney, Bon & Simba-missed so very much
How is our Sammy doing????
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