There has been so much going on, that I've slacked on my blogging. As I logged in today, I noticed I didn't even finish (or publish!) the last blog about his first day of Kindergarten back in August. Even though it's unfinished, I published it today.
Trey's had a rough time at school. His CGM alert is set at 320, which is high. We didn't think he would run that high and we've now found out we were wrong. He buzzes high ... Daily. To say we are all frustrated is an understatement.
The last week of August, we worked closely with his nurse, Mrs Osborn, and kept close tabs on his sugar numbers. While we realize that things like stress, nerves and growth spurts all affect blood sugars, we knew that his high numbers was more to do with lack of insulin. Remember at his doctors appointment, his Endocrinoligst even said he wasn't getting enough insulin. Trey was missing PE classes and recess's due to his high numbers and he hit the point (already ... Week 1) that he didn't want to go to school.
It was time for mom and dad to fight for their son. Jordan reached out to Trey's Diabetes Educator (DE) and she failed to return his messages ... Two days in a row. He then reached out to Trey's Endo and nurse (Emily) saying we are done with his DE Jenny and we need someone else to help us make the appropriate changes to Trey's insulin. Jenny finally phoned Jordan back. She made some accusations that didn't sit well with him, and she tried blaming Trey's numbers on school anxiety. When he mentioned Dr Gupta suggesting more insulin, Jenny said she never knew about that. He told her Trey was missing out at school and she WOULD fix his insulin numbers or we would take matters into our own hands. The following day, Thursday, she messaged Jordan with increased insulin across the board and I honestly cried tears of relief and joy. No, I'm not a diabetes educator and no, I'm not an Endocrinoligist but I play one 24/7. I am not looking at numbers on a spreadsheet, but looking at my SON. I know our life. I know what he eats every meal and every snack. I know what type of activity he's doing on a daily basis. I know when he is tired or when he's stressed/nervous. I know when he is feeling good and when he isn't. I know my son. Diabetes affects everyone different and every day is different, so for a DE who is 3 hours away and only checks in with us once a month and looks at his numbers on a sheet ... She honestly can't tell me what is right for my son. When Emily called Jordan back, he told her that it's time to listen to the patient. We've been asking since June for more insulin while DE's answer was to give him more carbs instead. She wanted me to feed him 60-80 carbs per meal. WHAT!?!?!? HE'S 5! So we won that battle, finally. And I finally got Jordan to see how pathetic of a DE Jenny is. That Friday at school, Trey had beautiful blood sugars due to his increased insulin dosages. Amen. Victory!
We travelled to Seattle last week. Getting through security with all of Trey's supplies was a piece of cake. No issues at all and that was a relief. Unfortunately, Trey ran pretty high most of the vacation. While our food intake was pretty good, we were on a 2 hour time zone difference, an elevation difference (yes, even elevation can affect BS numbers ... Who knew?!), and we walked MILES a day. It baffles people when I tell them that too much activity or exercise can raise blood sugars because if you are an adult with T1 or T2, the doctors tell you to exercise to keep sugars low. In kids, it's not the case. Even with increased insulin dosages, we had a hard time keeping his numbers in range.
We've started another week at school by being pretty high in the numbers. Yesterday no matter what we did, even with 3 correction doses of insulin, he couldn't stay below 250. He could be coming down with some sort of illness - guess we will find out. Todays' numbers have been better.
Jordan and I have great communication with Trey's school nurse, Mrs Osborn. She's never afraid to call or text us with an update or an FYI or asking a question. Trey and her are best of friends. Today her message said he didn't want to go outside for recess, he wanted to stay inside with her and help her with things so she allowed him to (he was HIGH anyway). She said "I can't resist those big brown eyes. They get me every time." Tell me about it! Haha
I began reading the three books regarding the insulin pump last night. WOW we will have a lot to learn, but I truly feel this is going to be the best answer for Trey to keep his numbers in range.
As a few people have suggested, I have not made a Facebook page for Trey. Between my personal page and this blog, I think I cover most of it. You can type your email into the box on the right and it will send you an email when I update the blog. Thanks for reading!
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