I am not exaggerating when I say that I typed up four pages of notes for the grandparents who will watching Charlie. This includes his schedule of daily meds/therapy rotations/etc, his medical history, and emergency contact information. A note for those of you starting the special needs journey: type up your child’s medical history and keep a copy with you. That way, you can just hand it to the hospital people if you have an emergency situation. I can’t remember where I read that, but it is SO helpful.
I have nothing packed. I haven’t got a swimsuit or a delicious pile of paperback novels. I am NOT prepared. Tomorrow I will try to run out and get these things, but I’ve also got to get one of Charlie’s prescriptions refilled and we have an appointment with the opthamologist in the big city, so it may or may not get done. Hello? I haven’t been to the opthamologist in two years and he’s been twice in the past year. I have GOT to start taking better care of myself. No matter about the stuff–I have a couple of books on the shelf I could read. That, plus some rum and diet coke and I’ll be good to go. Honestly, I just like sitting on the balcony reading more than anything else.
Luckily, my MIL lives down the street, so she’ll be checking on the house, watching the animals, etc. She and my parents are going to split the time taking care of Charlie, which will be interesting to say the least. I’m going to do a little cartoon evil cackle when I get back and they’re completely whipped.
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We were in the big city today to see Charlie’s very fancy cardiologist. If you’re new to the party, then let me tell you that Charlie had an un-diagnosed heart arrhythmia that almost killed him. All of his current medical problems stem from this. First we did an EKG, which is standard operating procedure. Then, they said we needed an echo to look at the hole he has in his heart. At this point I complete freaked out because I had NOT been worrying about the hole in his heart. I felt certain that forgetting to worry was going to bite me in the ass. I was wrong. The hole had closed on his own as they had predicted. Also, Charlie was eerily fascinated by the glowing TV showing curious George. Other than trying to eat the nurse’s hand, he was quietly transfixed by PBS.
The doctor is actively interested in seeing if Charlie still needs to take medicine for his heart arrhythmia. Many children outgrow tachycardia, but Charlie was especially attached to it before, so there is a chance he’ll require surgery when he’s older. To give his heart a little test run, the doctor wants to stick a probe down his esophagus to see if they can cause him to go into tachycardia again. I googled it, and the procedure is called Esophageal Electrophysiologic Procedure. It doesn’t sound fun, but I think we can handle it.
Additionally, Charlie kicked complete ass in therapy this week, which is just what I needed to see.
This may be my last post for about a week, so if you don’t hear from me it’s because I’m enjoying the sand and the sun (or, alternately, the shade, cable TV, and a rum and diet coke).