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Holidays didn't serve Sam too well in 2004. Thanksgiving weekend, he had his choking episode and ended
up with a tracheotomy and a two week stay at All Children's Hospital Pediatric Intensive Care Unit. Christmas was calm,
but a few days later he got an infection and we ended up back at All Children's, but only for a few days. So far, so
good - Sam has been really stable since then and doing well. As a matter of fact, everyone in the house got sick with
streph throat EXCEPT for Sam! Easter 2005 will find us on Miracle Mountain, which will be deserving of a page of its
own.
| When I first got to hold Sam again |
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| after almost two weeks. |
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On Saturday morning after Thanksgiving, Sam stopped breathing for a second. He had a cold, and we believe he just
kind of choked on snot (sorry for being so blunt) because he can't yet swallow. EMT's took him to the hospital, which
sent us to another hospital, which freaked out because they don't know how to treat kids like Sam. They ended up distressing
him to the point where he actually couldn't breathe - I know it doesn't sound possible, but that's what happened. He
had to be intubated (life support), helicoptered (twice in one little lifetime) and was in intensive care for two weeks.
And he got a tracheotomy.
| This was taken on Thanksgiving Day... |
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| ...Sam was still intact. |
| First thing off the helicopter |
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| ...just two days later. |
Something happened to Sam this trip to the hospital. He came to All Children's
intubated, and when a child is intubated he can't be held for fear of dislodging the tube (so they told me). That was
tough on all of us, and I frequently sat at his bedside with my arms stretched out underneath of him so at least he could
tell I was there. After a week in the hospital, Sam crashed. Whenever the doctors and nurses did something painful
to him (which was frequently) he stopped breathing and his heart rate slowed down to a dangerous level. He was always
angry, and it killed us to watch it - we were helpless.
Tim and I strongly believe he had given up - there was no other reason
for it, and it was always related to his suffering. That night, we let him go: our prayers changed from "heal
him" to "stop his suffering", whatever that meant for him. It was the worst thing we've been through - I know it was
the only time through all of this I thought we'd lose him.
The next morning, Sam was different. He wasn't angry, his breaths were
strong and steady, and he tolerated the poking and prodding like the champion he is.
I believe we had to let him go to keep him.
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| A central IV line, because Sam's veins were shot. |
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| Leads, monitors... whatever |
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We agreed to the tracheotomy because we were told repeatedly that it was no big deal, they are easily
reversed, and we firmly believed that we weren't going to be able to get him home without it. The doctor was adamant
that he needed it, because he believes all kids in his condition need one, and we agreed so the whole insane episode that
had happened when the hospital distressed him WOULDN'T happen again. Well, we were home for about two weeks, Christmas
came (and Sam started sucking that day! Yay!) and then he developed a lung infection. Apparently, he was sent
home from the hospital with an infection around the trach. Turns out it's a bigger deal after all.
| Ben and Sam, hanging out at home. |
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Sam has some jerky little movements sometimes. We like to think he's waking up and kicking
in, but the doctors like to think they're seizures. (Yes, I'm convinced they like to think that.) Anyway, although
there are no other symptoms of seizures, they wanted to do a 24 hour eeg. I agreed, and then the nurse came in and told
me I wouldn't be able to hold him until it was over. So I thanked her kindly and declined - it wasn't that important
and neither of us needed the kind of stress that comes from a baby lying on a hospital bed without his mother holding him.
Amazingly, after she argued with me for a few minutes, she was able to arrange it so I could indeed hold him the whole time
if I wanted. I used to think I had to listen to "them" - things got slightly more bearable when I realized it was the
other way around.
| Our beautiful boy, going through a 24 hour EEG. |
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| It came back normal! |
| Wrapped up in Aunt Katy's blanket |
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| The "rasta" hat is the eeg rigging. |
The eeg showed no seizures. The doctor has no idea what it is, but as long as we know what
it's not, we're happy. They also did a CT scan, which was "unremarkable" - a word we've come to love. Since that
little trip, Sam has been hospital free. Tim, Ben and I got streph throat, 100+ fevers, and Sam stayed well. He
gets stronger and stronger all the time, and we have faith that he'll be rid of that trach and feeding tube soon. Once
he wakes up from this, what a story we'll have to tell him. And what a story he'll have to tell us.
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