This is what I’m called now, apparently. I acquired that title Monday. I get to tack it on to “hemo-mom.” That’s hemophilia. I have two boys with severe hemophilia, so I’m no stranger to life long health issues that require lots of needles to manage. Well, in the case of hemophilia, it’s only two needles a week, but they have to find a vein rather than just some skin. I used to have people compare hemophilia to diabetes when talking to me. Like they thought they had some understanding of my life because their child had diabetes. I scoffed. Yeah, right. Pricking a finger or sticking a tiny needle into a belly is does NOT compare to trying to get a larger needle into a vein, digging around, having to stick again (6 was the most times I ever had to) trying to find a vein. The whole time, my child is fighting and screaming at me as I torture him. Many infusion days ended in tears for both me and my son. Yeah. Diabetes does not even come close.
Except now, we have diabetes. I am thankful that she’s old enough that I don’t have to fight with her the way I did my boys. I am also thankful that as an RN, I do have some small working knowledge of how this works. I’ve cared for patients with it. I’m not anywhere near as green as I was when I was handed the diagnosis of hemophilia.
But, man, this is still terrifying! I worry about her constantly now. I worry she’s going to collapse walking home from school I worry about everything. This sucks.
So, we had her appt. with the endo (that’s endocrinologist for the uninitiated, the specialty that manages diabetes) today. It was a lot. She got her meal time insulin added to the routine. She also added three more fingers sticks, at least for now. So, we are currently at 12 sticks a day – five insulin and 7 finger pokes. We expect to be able to drop one insulin and hopefully 3 finger pokes after her next appointment (in 10 days).
At the appointment, they gave her more of the long lasting insulin, which she’s been taking at night, and her first dose of the meal time insulin to try and catch up to what she had for breakfast. By her pre-lunch BG (blood glucose, the finger prick) was down to 152! That’s as low as we’ve seen. Her fasting (first thing in the morning) has been in the 200+ range. Our goal for right now is 100-200. I was so excited. After lunch, it was still under 200. Woo hoo!! Then, tonight, before supper, it was 348. Sigh. This is what it is, I guess. Up and down until we get her stabilized. So, a call to the nurse practitioner with instructions to tack 3 more units on to her supper insulin. The NP gave me her personal cell phone number, by the way. I’m to call with any questions, day or night. I heart her.
I’ve been poking her in the upper arm. Tonight, I suggested we try her thigh because she can reach that to do it herself. She was very concerned. She’s very thin. Finding enough fat to stick her in is tricky. But, we did it and she decided it was actually better than the arm. So, one step closer to self injecting. I have to work tomorrow night. Not sure how that’s going to go with her bed time shot. Maybe during the 4 all day long, she will be able to do it herself by the end of the evening.
So, back to the hemophilia vs. diabetes thing. Yes, getting meds in is WAY harder with hemophilia. But, at least with the boys, once they get factor, I know they are good to go for around 48 hours. I can totally let go of any concerns for bleeding. Normal concerns of course. If ANY of my kids slammed into a brick wall, I’d do something about it. But as far as everyday activities, no worries. But with diabetes, while meds are easier, if more frequent, the worry never goes away. Before she’s treated, I worry she’s too high. After she’s treated, I worry she’ll go too low. And, at any time during the day or night, she could react one way or the other. Apparently, kids die in their sleep from this. Thanks other blogger, for putting THAT fear in my head. If I were to pick one or the other, I’d pick hemophilia, hands down. But I don’t get to pick. God has seen fit to allow BOTH in my life. And so it goes….
Oh, and happy world hemophilia day.