We had an infusion class today. Having a bleeding disorder means you are missing a specific ingredient in your blood. To treat bleeding or prevent bleeding you have to infuse it into your vein. As in, start an IV.
Some people have no trouble doing this. Some people, like me, like Sage, have tiny useless veins that are impossible to see, that roll, that blow, and taunt you. “Here I am! Ha ha, missed!” So Sage had a PICC line, and then a fistula, which is a surgically created vein. This was awesome, you could hit it with your eyes closed, it never blew. Only it grew. and grew, and grew until it looked like a big butt on his arm. People would stare at it, and ask him what it was. He would tell them it was ebola, or AIDS. Once he convinced some girls at school it was his unborn twin, and since we are Catholic, (we’re not) he couldn’t get it removed. Then he got in trouble for making them cry. Their parents should cry because they are raising stupid children, but I digress. Sage had the thing removed last year. Now he shows people the scars and tells them he was in a knife fight.
Eden’s veins are slightly better, so I can usually start the IV at home. Sometimes I have to stick him more than once. That always make me feel like crap. His eyes brim with tears. “That’s okay, sniff…I know you are doing your best.” Augghh. Worst. Feeling. Ever.
So the Hemophilia Treatment Center does an infusion class. Eden has tried before at Hemophilia Camp. Yes, there is a Hemophilia Camp. No, the kids are not all wrapped in bubble wrap. Don’t be an ass. He tried but could never get the vein. It takes years to learn to stick yourself with a needle, so here we are.
There are several other families, and the nurses, two I know and work with, and a new one. The new one seems determined to freak everyone out.
Now, I am proud to say that I have calmed down over the years. When Sage was two I called the doctor if he “looked funny.” I would follow the poor kid around with an ice pack and factor, just in case. I wouldn’t let him do ANYTHING. Eden has benefitted from the years of learning to calm. the hell. down. And lexapro. These are things that have improved my parenting. I am not ashamed.
Only new nurse thinks I am too calm. She wants me to know disaster could strike at any moment. Aren’t we here to learn about vein access?
“Does anyone here know why a frisbee could kill you?”
Eden looks at me, alarmed.
“Because if you get hit in the throat, and it starts to bleed, you could CHOKE ON YOUR OWN BLOOD. YOU COULD DROWN.”
“It’s okay Eden,” I say. “I’d hold you upside down so you could breathe.” This seems to satisfy him.
She looks at Eden. “Why isn’t he wearing a medic alert?” “um, we lost it at the beach?” “Say he gets hit on the head on the playground. Say he’s PLAYING ON THE MONKEY BARS.”
She says that as if it’s comparable to juggling steak knives.
“Um, I am usually with him?”
“Well,” she says. “By the time he’s unconscious it’s too late, anyway.”
What the hell does that mean? I decide it’s time to go and get a juice box or something.
Eden and his new friend Miguel are putting a tourniquet on a fake rubber arm they have for us to practice on. Maggie, the calm nurse, is explaining the steps of setting up. Eden raises his hand to point out that we don’t always flush with saline and that I don’t nesscesarily bleach the table before setting up the sterile field. I laugh and tell him of course I do, and roll my eyes, like, “Kids, such liars…” and try to ignore Debbie Downer Psycho Death nurse’s accusing stare.
The rubber arm thing is cool. You can feel the vein and it has purple blood. I am playing with it, touching it, making this farting noise with it that Eden and Miguel think is hilarious. Meanwhile, Debbie is telling us how we should NEVER leave the country without factor. “We had a patient who was dirt biking in Mexico. He ran into a barbed wire fence, people. She makes a sweeping hand motion across her face. “A big, bloody flap. Too much blood to sew the face back on. He’s sorry now.”
So, he’s wandering faceless around the Sonora Desert, moaning, looking for factor, gauze and some steri strips? The look on Eden’s face tells me he is sharing our bed tonight. Thanks, Debbie.
Eden practices with the needle, getting the purple blood return, and I am so proud of him I high five him. “CONTAMINATION” says Debbie. Good Lord. If she could only see what goes on at our house during infusion time. It’s a miracle we don’t all have gangrene, wandering around Uptown..moaning…looking for neosporin and a band aid…
We are almost done, and I am thanking Maggie and Maria and chatting with Miguel’s mom. I promise to replace Eden’s medic alert and get one for myself, and while no one is looking I grab one of the smaller fake rubber arm wrist thingys, because it is going to be SO much fun to practice on it and make it bleed on my friends.
There was a time when I lived in fear, as if my children were made of the thinnest glass and had to be protected from the tiniest bumps and bruises. I realized damn quick I couldn’t stop them from getting hurt, but I could stop them from living, and it’s hard enough to be a freaking hemophiliac, so you might as well live and do and just bring your factor with you in a cooler. And maybe a rubber arm to freak your friends out with. So here is my special needs parenting advice for the day: Life is short. Play hard, wear your medic alert, laugh a lot, and bring snacks.