Okay. So here's what happened. I'll start with the good stuff.
We left for Fairfax, Virginia to see Tim's mom and dad the Saturday before Christmas. I thought traveling then
was going to be a NIGHTMARE, but it turned out to be okay. We were practically the first people at the airport, our
plane left so early, and that makes all the difference. True to form, the employees of Tampa Intl Airport were incredibly
rude and nasty; if they were that hateful to us as the first people they saw that day, I can't imagine the poor souls that
had to deal with them by the end of their shifts!
Sam's
new stroller looks pretty normal, and so we lost our "special" treatment - that was perfectly okay with us. Usually, the security
people almost pass out when I suggest I can take Sam out of the wheelchair to go through the metal detector; this time, they
demanded I take him out and they made us put the chair through the scanner as well. They argued with me that they
needed to fold it up to put it under the plane; I explained that it costs $2,500 to replace and they'd better leave it alone
so they grudgingly agreed.
In Virginia, we had a nice Christmas. Ben and Sam slept together in one room and Tim and I in the room next
door - I checked on the boys constantly, but that was as far away as Sam has ever been from me. I think he is ready
to move into Ben's room at home; it would be one more step toward normal.
We didn't miss any
ABR hours on Sam while we were there, since it's so important. I grew up about an hour north of there, in
Ellicott City, MD, and on Saturday all of my old friends came to see us since Sam's therapy makes it too hard to go out visiting.
I have quite a group of friends - I don't think most people hang on to the people they've had their whole life,
but I've known some of these guys since we were 7. It was so good to see them all, and it made me miss them more than
I realized. I haven't laughed that hard in a while. Sam got to meet Chrissy and
Chrissy got to meet Sam - a very important meeting, indeed. It was a really good day.
Sunday night, things seemed fine, but when I put Sam to bed, his heartrate was sky high. It's normally about 100,
and it was about 170. That means something's wrong, obviously, but I had no idea what. He needed lots of suctioning,
which is unusual. Then I couldn't even get him to digest his food or water, another crazy thing since he has a feeding
tube. I always figured he'd never dehydrate because of that, but I couldn't even get any water in him. He was
miserable, and so, of course, were we.
And then he started gasping. He looked like he was having trouble breathing, but his oxygen level was okay.
(He has a monitor to tell us that.) So now we're getting really scared.
On Monday, I called the pediatrician to get an antibiotic, but nobody really thought that would do anything. Dr
Towle, the chiropractor/homeopath was in Costa Rica, so I knew he wasn't reachable. Sam had times of seeming fine,
but then he would crash again.
We felt very helpless and very alone. We can't take him to the hospital, because they just don't know what
to do with him. And we don't trust them at all, so we can't hand him over to people we don't trust. We certainly
can't let them hurt him anymore.
And then the suction machine stopped working properly! By this time it was New Year's Day, so there was nothing open
and nobody to help us with that, either. We were flying out the next day, and just didn't know what to do. Sam
was so unhappy and needed pretty constant suctioning, and the machine was not charging. It's not a life-saver for him,
but I'd hate to be stuck in the air with it not working.
That night was the worst. He seemed perfectly fine for the longest time, I thought he was over it. And all
of a sudden he started gasping again. Tim and I thought we were losing him. And we didn't know why. But
in the middle of all of it, I just looked at Tim and whispered "no hospital" and he said "of course not" - you might be surprised
to hear that's the most we'd discussed that up to that point in Sam's life. (He'd not scared us like this before.)
We were basically deciding to let him go. (I'm at peace with his going on and leaving the body he's trapped
in; I don't know how to watch it, though.)
So I figured if he was going - for reasons we didn't know - it wasn't going to be with a suction machine going and the
monitor on, so I just held him close and leaned back in the bed with him sideways on my chest. And he settled down and
went to sleep immediately. So I didn't move for about 7 hours.
Dr Towle called me the next morning when we were getting ready to leave for the airport. Sam was better, I guess
the sleep and that position did him well, so we figured we'd chance flying home - I really wanted to get him to Dr T's office.
He told me some homeopathic remedies to give him to make him feel better, and we saw him the next day. HIS RIBS WERE
OUT OF PLACE - he had been sneezing, and that knocked his ribs out, pushing against his lungs and tummy, making all that happen.
On the way home from his office, Sam still wasn't digesting his apple juice so I called him back. He said it sounded
like Sam had some chlorinated water - through all that, when he wasn't eating, I had been giving him tap water, which he never
gets, and that destroyed his poor belly. Some probiotics and apple cider vinegar, and he was just fine.
It has taken me a while to get over this, because aside from the fact that I thought we were losing him (that is really
a different issue), it's more of what would have happened if we had called 911. They would have run so many tests on
him and I think he probably would have decided to give up. Whether or not he did, the decisions could have been taken
out of our hands, as happened when he got the trach when he was a baby. Regardless, they NEVER would have figured out
that his ribs needed adjusting and he needed some vinegar!
It's just more confirmation of the very different place we're in than the rest of the world, than we want to be in -
very different than we ever knew existed, really.
Anyway, if you stuck with me through all this, God bless you. I bet you need a bathroom break now. I know
I do!
So the holidays are over, and things are settling down. I think. We took the boys to Virginia for Christmas,
and things were almost uneventful. Sam gave us a scare in the last few days and the medical equipment was possessed,
but I'll get into that another time. I figured I'd better post or you'd think I'd given up. I haven't.
About the Christmas pageant. That was really good. Sam was an angel with the rest of the three year olds.
I was afraid this year I couldn't handle the pageant, since it was Sam's time to be in it and I didn't think there was anything
he could do, and I usually help out with the costumes quite a bit. I just didn't know how I could put costumes on the
other kids and keep on functioning. But then our pastor said, well couldn't we find something for Sam to do, since he
is so very loved by everyone in the church? And so we did. We camouflaged the stroller to look like a cloud, and
a very proud Ben brought him to the altar with the rest of the angels. Ben had been sick and missed the rehearsal, so
he ran back and forth a bit, showing off Sam, which was even better. And Sam behaved so we didn't need to turn on the
suction machine to interrupt the birth of Jesus, so that was good, too.
I'll post on the trip to Virginia later. I haven't recovered from it yet. Most of it was really good.
