OK, there are a lot of reasons, but today I have a vent about one certain part of it. The stupid disease is a total guessing game! Every person is different, there is no tried and true formal and in order to find what works, you just have to guess. Its unpredictable, you dont know how anything will effect her until it happens and I dont really like to experiment on my kid. Her blood sugar was in the 30s the other day and twice its been in the low 40s. For some people thats the level where they have seizures and go into a coma. For Kylee it doesnt really do anything to her. Well it does, but nothing you can see.
Since Kylee's diagnosis a little over a month ago, she has been all over the place with her blood sugars. First she was WAY high, now shes WAY low. She has had her carb ratios(how many units of insulin she has to have for however many grams of carbs shes eating) changed from 1:20 to 1:15 to 1:10 back to 1:15 then 1:20 for lunch and 1:15 for everything else and now back to 1:20 for everything. She takes a long acting insulin at night and about once a week, her doctor decreases it. First it was 20 units, then 16, then 14 and now 11. She'll eat a meal that has 55 carbs in it and her blood sugar is 90. I have to decide whether to round up and give her 4 units of insulin(by the old formula) or 3 units because she is under 100. There is no rule as to what you have to do, the doctors just tell you to do what feels right. Hah! HOW THE HELL AM I SUPPOSED TO KNOW WHAT TO DO!?!?!?! Im not a freaking doctor and I really dont want to screw up and make her be either to high or too low because when it comes down to it, Im responsible for how she feels. That sucks. It sucks to know she doesnt feel good because I probably just gave her too much insulin. It sucks to know that I really do hold her life in my hands and if I screw up too badly, it could kill her. People keep telling me that things will normal out once her pancreas stops producing all together, and I cannot wait for that day. BUT...of course there is no way to tell when that is or how much of it is still working, its just a guess. Could be 6 months, could be 2 years. It could be working at 60% right now, it could be working at 40%. 12 hours from now it could be a totally different percentage. I dont like guessing games.
OK, rant over.
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4 comments:
Sweetie. Take a deep breath. This IS hard, it's hard to understand, hard to manage and hard to live with, both for you and for her. I wish I had some advice but all I have is a hug and a hope that things will settle in very soon for both of your sakes! (((hugs)))
{{{HUGS}}} to you and K. Hope things settle down for you soon.
I have nothing other to give, but some hugs. Diabetes is one thing I do not understand in the slightest.
Big hugs.
As the mother of an 8 year old with diabetes - I can totally empathise with you. My Rachael was diagnosed about 2.5 years ago and every day is a constant battle to keep her levels stable and her healthy and alive! You may already have this but if not I cannot reccommend the book using insulin by John (I think it's John) Walsh. I learned more from that in an hour than I did my diabetes team in a year.....lol I wouldn't say it gets easier but it becomes easier to live with. I wish you both all the best. Take care, Sharon
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