It's been a long two weeks of basal testing. I've been talking to his RN daily and awake every night checking his blood sugars. His orders are different for the entire day. His profile has special settings for specific times of days. Yet, still we are not in the target range of bg70-150.
My poor Daniel hasn't had a good nights sleep in weeks, homework is getting done, schoolwork and class work is complete, he's in the office every two hours, eating snacks as often as he needs, and we are all working as hard as we can for his poor little body to find its balance. His highs are extremely high and his lows extremely low. He's exhausted. But, he's a trooper. School nurse has already called this morning and he's BG404 at 9:37am. He was BG109 this morning. But, at midnight he was high at BG327, 2am BG287, and slowly dropped with correction every two hours until I dropped him off at 7:45am. It just goes to show you Type 1 Diabetes in unpredictable and unfair to a child. It takes control of their day and nights. There is no rhyme or reason. You just have to be flexible and ready at any given moment to drop everything you are doing. Our life, the school nurses life, it all revolves around a Type 1 Diabetics at that moment. I will follow as Father John and Deacon Greg have asked me to do and give it to God at this point in my life. It's the healthier option.
I've ran out of supplies. Insurance only allows for a certain amount to be shipped at a time. So with all his corrections we have had to make numerous site changes and with a site changes that includes more insulin, cartridges, syringes, and infusion sets. I've asked the hospital and the pump company for help. This is a $6000 pump he is wearing. We have had to add it to our home owners insurance per the pump company. As it can be replaced in a claim. I'm learning so much as we go. But, it's scary when it's not taken seriously. When others feel like it's no big deal. Supplies do run out, insurance doesn't cover everything, his life is in danger, we do not sleep, his life comes first, his schedule is important. It's not a joke. His infusion insets are $27 each. Insurance only covers 10 insets a month which is for a change of once every 3 days. We have ran out in ten days because of site changes due to high blood sugars. One box is $208.98 for 10. That's the best price the pharmacy can give us.
I advocate for my son as any other type 1 mother does for their child. Unless your the caregiver full-time, you don't feel the worry. I'm waiting for supplies that I hope arrive today that we had to order on Monday. The cash price is our only choice. When supplies run out on the pump, it isn't the same as with the syringes or the pens. It's a completely different and new process. It's a more expensive form of treatment. Insurance isn't as willing to pay for things.
But, we will do anything for the health of Daniel. Cutting corners a little this month. God always finds a way. That's what our savings is for. So here's to another week on the pump. Let's pray we get his basal rates get under control soon and we can start enjoying his pump.
Having a child with a lifelong disease is not a joke. It doesn't go away. We live with it each and every single day. We don't get a break. We don't get a vacation, a day off, trips with friends, nights out. We take him with us everywhere we go. He's our priority. #prayingforacure
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