First of all ... Trey Bagwell is on his way to Aberdeen this week to begin the hockey season. Let's all get excited for Wings hockey real quick!!
My Trey will start 4-on-4 hockey the middle of September ... another round of applause please!!!
School starts tomorrow .... big high-fives for everyone reading!!
Now that I got that all outta the way ... let's get to the reason for my blogpost.
I'm frustrated as HELL right now with the school nurse supervisor. Like ... I wanna hip-check this lady straight into the boards. UGH. I made up the 504 - everyone signed it just fine. Jordan met with the nurse, Heather as well as Trey's new teacher, Mrs Salfrank and all went well. I've had several discussions with Heather over the past couple weeks and we're on the same page as far as Trey's care goes.
Today I got a phone call from Heather that her supervisor needed more information regarding Trey's healthcare plan. She's not ok with us just going day-by-day like we currently are. Heather and I are in contact every day - several times a day sometimes - about Trey. As the supervisor put it to Heather, not everyone may be comfortable in calling the mom for some help. Did you have any sort of expression when you read that? I sure as hell did.
She needs more of a concrete plan. Say for example, something like this:
---> Trey can have a snack if his sugar is under 140. He cannot consume more than 12 carbs for his snack. He should get insulin for the carbs only. If Trey's sugar is over 140, he should not have a snack. We will not need to give a correction dose of insulin for his blood sugar before he consumes a snack.
Ok ... so I just whipped that up real quick but what she's looking for are concrete numbers. Blood sugar, carb counts, insulin dosages. I told her "I cannot do that. Nothing about T1 is concrete." I was told that if some nurse comes in to substitute, she may not feel comfortable calling me for help. My response???? "Well then I guess that substitute shouldn't be there trying to take care of someone she isn't comfortable with. Ever think I'm not comfortable in this sub nurse NOT contacting me to verify things with me??? Think maybe if there is a sub nurse, I'll just keep Trey home. Win win for everyone then!" My response wasn't thought-out well and it didn't go over the best either.
The nurse supervisor is someone I've known personally for a long time. She was a nurse for the school district for years before being moved up and over-seeing all school nurses. Again, just because someone has a degree in the medical field, they don't always understand how Type 1 Diabetes works! Hell, I live the life of a pancreas 24 hours a day and I don't understand it either sometimes.
We got into a discussion about when a correction dose of insulin should be given .. and again I said, "It just depends. What did he have for lunch/snack? Where are the arrows on his CGM? Has he been to PE or Recess yet? Is there another snack coming up later today? What time is it? What time was his last dose of insulin? Does he still have any insulin on board?" I mean ... there are just soooooo many factors that play a part. I could come up with 300 scenarios and every one would have a potential different response! I cannot put it to you in black and white.
"Should we say that over 250 he needs a correction and then he can't have snack?" she asks. I was getting so damn frustrated on the phone. I said, "I cannot answer that. Maybe on Tuesday we would do that but on Friday we would let it go. Or maybe Monday he would not get the snack and maybe Thursday he could have half of it with insulin. I cannot give you concrete numbers. I can't!" She says she wishes it was easier and I said NO SHIT! ME TOO!
So here we are - the day before school. All was smooth-sailing and now I'm so damn frustrated. Nothing about any of this was said last year. I didn't have to give concrete numbers at all. We played it by ear - every day - and it worked out perfectly. This year we will play it by ear - every day - and things will be fine. As for concrete numbers ... it isn't going to happen and I'm not going to give you any type of concrete numbers or scenarios just so you can give them to a sub-nurse that doesn't know anything about T1D. Perhaps you should educate yourself and your staff on how DIFFERENT and DIFFICULT managing T1D really is and that there is nothing .... nothing concrete about it. Heather and I got this ... the supervisor can go fly a kite.
Rant Over.
Monday, August 21, 2017
Friday, August 11, 2017
School can start now
This summer has flown by. Last entry was June 7th!?
This time lat year, I was a friggin mess. I was preparing to send my baby off to Kindergarten to a school who had no other T1 child in it. I was printing off page after page to make up a dozen folders full of Diabetes information for his teachers. I was angry with the principal for giving me the run around over the 504 meeting I had requested.
This year??? I can't wait for Trey to go back to school. It's been a short - but yet long summer with both kids home with me. I forgot how much work it was dealing with his diabetes care 24 hours a day and not getting that little 8 hour break during the day when he's in someone else's care. While I still read his CGM readings and text back and forth with his nurse multiple times a day -- she is the one who had to handle it all. I also cannot wait for him to get back into a routine. Getting up at the same time, eating lunch at the same time, having recess at the same time. All that routine honestly helps a T1 out. He needs it.
We had a Endo appt in July and I was certain his A1C level would be fairly good because even though we had that month of sneaking food, he seemed to be doing better in July. Based on the Dexcom graph, things looked to be under 7.5. Bloodwork said otherwise. Defeated. It's like I was flying in a hot air balloon with 7.5 and the day the phone call came, someone popped that damn thing while I was 3000 feet in the air and I came crashing down.
I added basal rates, I adjusted his lunch ratio and I decided instead of being OK with 200 blood sugars ... 200 was our new 300 and it just couldn't happen anymore. In fact, when I see 180 on the CGM I start giving a mini-dose of insulin to help stop it from getting any higher. I reached out to my ModSquad group for help because I swear .... this group of 8,000 men and women know EXACTLY how to help me. They suggested I begin pre-bolusing Trey at meals. We've done this some in the past and it always back-fires on us, but I was ready to deal with it and make it part of our new routine to see if it helped. Can I tell you .... it DID help!!!! While it's hard for Trey to sometimes to full-fill his carbs he needs to eat, there is always a few skittles or a 1/4c chocolate milk he's willing to have to be sure he's got the carb counts right.
We're far from perfect ... we're sitting at 164 average the last 7 days (we also had a 4 day vacation to Cedar Lake Speedway right in the middle of this new pre-bolusing deal) which is pretty good, but I would LOOOOOVVVVVVEEEEEEE to see that at 150. We don't go back to the endo until November, but 8.9 A1C just cannot happen again. When doc says, "He's still under 10." that's not good enough for mom. Under 8 is where I insist we be ... and therefore I'll keep plugging away at trying my damnest to make that happen.
School ... less than two weeks ... cannot wait. Such a different story this year. I'm confident in his teachers, the school staff and have the utmost belief in Mrs Osborn, the nurse, to keep my guy healthy under her watch. Such a relief for me this year.
This time lat year, I was a friggin mess. I was preparing to send my baby off to Kindergarten to a school who had no other T1 child in it. I was printing off page after page to make up a dozen folders full of Diabetes information for his teachers. I was angry with the principal for giving me the run around over the 504 meeting I had requested.
This year??? I can't wait for Trey to go back to school. It's been a short - but yet long summer with both kids home with me. I forgot how much work it was dealing with his diabetes care 24 hours a day and not getting that little 8 hour break during the day when he's in someone else's care. While I still read his CGM readings and text back and forth with his nurse multiple times a day -- she is the one who had to handle it all. I also cannot wait for him to get back into a routine. Getting up at the same time, eating lunch at the same time, having recess at the same time. All that routine honestly helps a T1 out. He needs it.
We had a Endo appt in July and I was certain his A1C level would be fairly good because even though we had that month of sneaking food, he seemed to be doing better in July. Based on the Dexcom graph, things looked to be under 7.5. Bloodwork said otherwise. Defeated. It's like I was flying in a hot air balloon with 7.5 and the day the phone call came, someone popped that damn thing while I was 3000 feet in the air and I came crashing down.
I added basal rates, I adjusted his lunch ratio and I decided instead of being OK with 200 blood sugars ... 200 was our new 300 and it just couldn't happen anymore. In fact, when I see 180 on the CGM I start giving a mini-dose of insulin to help stop it from getting any higher. I reached out to my ModSquad group for help because I swear .... this group of 8,000 men and women know EXACTLY how to help me. They suggested I begin pre-bolusing Trey at meals. We've done this some in the past and it always back-fires on us, but I was ready to deal with it and make it part of our new routine to see if it helped. Can I tell you .... it DID help!!!! While it's hard for Trey to sometimes to full-fill his carbs he needs to eat, there is always a few skittles or a 1/4c chocolate milk he's willing to have to be sure he's got the carb counts right.
We're far from perfect ... we're sitting at 164 average the last 7 days (we also had a 4 day vacation to Cedar Lake Speedway right in the middle of this new pre-bolusing deal) which is pretty good, but I would LOOOOOVVVVVVEEEEEEE to see that at 150. We don't go back to the endo until November, but 8.9 A1C just cannot happen again. When doc says, "He's still under 10." that's not good enough for mom. Under 8 is where I insist we be ... and therefore I'll keep plugging away at trying my damnest to make that happen.
School ... less than two weeks ... cannot wait. Such a different story this year. I'm confident in his teachers, the school staff and have the utmost belief in Mrs Osborn, the nurse, to keep my guy healthy under her watch. Such a relief for me this year.
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