Tuesday, September 4, 2007

Exceptions to My Rules

So, our inservice with #1's new Jr. High School staff went well. I let him lead the discussion; I started off explaining that he has hemophilia and then let him explain what that meant. I could tell from the expressions on the faces of the staff that they were impressed with his ability to explain what it's all about.

He started off simple: "Hemophilia is a Bleeding Disorder. My body doesn't make a factor that's needed to stop my blood from clotting." Then he mentioned his liver specifically and that he does infusions twice a week to give himself the factor he needs. WE (both of us!) talked about some of the things we worry about most - head bumps, falls that could injure joints, and things like that. He also shared that he won't bleed faster than someone else, it just doesn't stop.

All good.

Last Thursday #1 came home and said that at lunch he'd scratched the roof of his mouth with a chip (a Sun Chip, to be exact) at lunch. Little, itty bitty scratch...no biggy. It kept bleeding and he hates that "quarter" taste in his mouth. He ate a Popsicle, pressure with gauze and an Amicar mouth rinse * and all was fine.

Friday morning he calls my husband and says that it's starting bleeding again, not a lot, but the taste is bugging him. So my husband goes to school with the infusion stuff so #1 can do a poke. But my husband only took one butterfly needle...and #1 missed (the first time he's missed in months) so my husband drives home and brings a needle back, they finish the poke and all is well. It's the first time my husband has had to show up at school...now he knows the rule of packing triple of everything!

At supper over the weekend my husband asks #1 "Who was that guy that walked through the nurses room while you were poking" and #1 says "The principal".

So, today I picked #1 up from school (he usually takes the bus) and the principal was outside so I decided to introduce myself to him (he couldn't be part of the inservice, he was out of the building). It's important for me to get some "face time" with everyone in the building that the boys come in contact with. (It's not a hemophilia thing, just a fellow teacher thing. We always remember the parents who make a point of introducing themselves - put the kid's face with the parent's face.) I remind him who I am, who #1 is and that he walked through during the infusion.

I - jokingly - say "I guess I forgot to tell your staff about the dangers of chips". And the principal says (very seriously) "Let #1 know that when he goes through the lunch line, he can tell the ladies that he can't have potato chips". Uhhh......

I reassure him that I'm joking about the chips and that #1 has broken an arm, jammed a thumb and done any number of bone-head moves, but you just never know what will end up being a pain in the neck.

And I also reassure him that chips aren't a danger.


*We have found that if the boys are having oozing in the mouth, rinsing with severl cc's of Amicar for several minutes (we shoot for 5) works well. When then swallow it they both complain of upset stomachs. My boys have hemophilia B. Sometimes what works for one doesn't work for another.

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