Monday, August 10, 2009

Back to School Stress

I've got one about to start college and one going into 2nd grade. To say I'm getting a little stressed about it all would be an understatement. Riley going into 2nd would be OK, if I could just take diabetes out of the equation. But, unfortunately, I can't do that.

First, an update on my mom. She had a HIDA scan to test how well her gallbladder is functioning. It turns out it's not functioning at all. A result of 35% or more is considered normal. When we visited the surgeon last week we found out that Mom's results were virtually 0%. Well, that explains a lot.

Two months and thousands of dollars later we think we finally have an answer. She is having surgery on Thursday to have her gallbladder removed. Our hope is that will relieve her symptoms of fatigue also.

Holden is moving into his apartment on August 23rd. The apartment is furnished but I have yet to buy any linens or kitchen supplies. Holden and I are supposed to go shopping Saturday and get all that stuff. He is getting so excited. And, I'm really excited for him, but at the same time I know I'm going to miss him terribly.

Because my mom has been so sick I didn't get to go on the mission trip we had planned in July. Holden went and spent 3 nights away from home. I was so happy to see him when he got home. I really missed him. I know once he moves he'll be OK and eventually I will too. I've really done better with it than I thought I would. Of course, he hasn't moved in yet. Once he does I'll have to get back to you and let you know I how I feel then.

It's almost time for Riley to start back to school. His first day is August 21st. If you are the parent of a child with D I don't have to tell you the stress this causes. He has a new principle this year. So, my first task is to meet with him and see what his thoughts are on things. Riley goes to a private school, so they really don't have to do what I ask if they don't want. But, I've never had a problem in the past and I don't expect to have one now. I really, really like the new principle (He started in the middle of the school year last year.) and have found him to be very fair. I will also have to meet with his new teacher.

His teacher this year was my 2nd grade teacher. She was also Holden's second grade teacher. I know her well and totally trust that she will take good care of Riley. Still, that initial meeting is stressful for me. Like I said, he's in private school so they really don't have to accommodate me at all. Even though I've never had a problem that thought is always in the back of my mind.

The plan I have for him this year is different than in years past. I'm going to run it by you guys and see what you think. When Riley was in Kindergarten he checked his own sugars, but at that age the numbers really didn't mean anything to him. I trained his teacher what to do and how to give insulin with the pump. I made a notebook with as much information as I could cram in it. She knew what to do for highs and lows. I went to the cafeteria and got carb counts. I did the best I could to train her in how to take care of Riley.

She did an awesome job. Even though I had trained her and didn't require that she call me, she called me at almost every single sugar check. Of course, I didn't mind it at all. Riley's sugars that year were good for the most part.

That brings us to first grade. It was a whole different experience. By the time Riley was in first he had learned how to dose himself with the pump. His teacher was still responsible for looking at his sugars and counting carbs as well as supervising him while he put his numbers in the pump. She was also responsible for treating lows and making sure he rechecked his sugar in 15 minutes or so to make sure it had come up.

I trained her as best I could and gave her a notebook chocked full of information too. I told her to feel free to call me at any time with questions. She didn't call all that often. She pretty much handled things on her own. She tried to follow my instructions, but as you all know, there is really no way to teach proper diabetes care. You really have to live it to fully understand it.

For example, if I were to check Riley's sugar 1 hour after he ate and it was 95 I would know that if I didn't do anything then he would go low. I would take into account how much insulin he had on board and give him a snack and maybe even a temp basal decrease. Last year his teacher would check and think "OK, that's a good number" and let it go. Of course, in a little while Riley was low. Then, she'd treat with juice like she was told. But, the amount of insulin that was still on board was never considered. I touched on that with her, but like I said, unless you live it, you just can't really understand it.

Now, I'm not complaining about Riley's teacher. She did a good job with Riley. She just didn't do a great job. And, sorry, but when it comes to my child I want as close to "great" as you can get. Riley's sugars were horrible pretty much the whole school year. It wasn't until about the last 2 months of school that things finally clicked into place.

This year my plan is to take decision making power out of the hands of the teacher. I want Riley to call me after every sugar check and I will tell him what to do. He's old enough now that he can do what he needs to do while I talk to him on the phone. I will still train his teacher like I have before. She will still know what to do, especially for lows. And, she will still have to learn how to count carbs. But, as I said before, there is no way to teach how to handle insulin on board and exercise and sickness and stress. There are just too many variables. I refuse to have another school year like last year.

My hope is that administration will not fight me on it. I hope that they will see that it is what is best for Riley. Also, it really does take some of the strain off of the teacher.

I've talked with Riley about it and he says he's fine with calling me when he checks his sugars. On a good day in Kindergarten his sugar only got checked 2 times. On a good day in 2nd, it should be the same (once we get basals ironed out and except for PE days). Once we get things straight I'm OK with him checking at snack and lunch and then again if he has PE. Of course, there will be high days and there will be low days. I know there will be days when he'll have to call 5 or 6 times. To say that it doesn't add to my stress would be a lie. It's going to force me to think about it more at work than I'd like. But, I think it will be the best thing for Riley.

Last year there would be days where Riley would run in the 300s for hours. No one would call. The teacher would just have him give himself insulin. Or, there was one day when he was in the 400s at around 1 or 2. He got insulin and was never checked again before he went home. Of course, I called the teacher and told her how dangerous it was and that his site could have been bad and that he could have gotten really sick. The instructions in the book told her to call for any sugar over 350 and for Riley to recheck his sugar 1 hour after dosing for highs to make sure they are coming down. But, this wasn't done. There was also one day that she forgot to get Riley to dose for his snack. If he's calling me at every sugar check these things won't happen.

It's times like this that I really hate this disease. Most days I've made peace with it. But, when I start thinking of all the responsibilities Riley has to take on at such a young age it makes me mad. When I think of everyone else running off to PE while Riley has to stay back and call his mom it upsets me.

But, just like anything else with this disease you just gotta do what you gotta do. You have to take the lot you've been given and do the best you can with it. My goal is to keep Riley as stress free about his diabetes as I can while maintaining the best control possible. It's not as easy as it sounds.

6 comments:

Kelly said...

Good to hear they found an answer to your Moms ill feelings. I had my Gallbladder taken out a few years ago, nothing to it. Hopefully her surgery will be just as well!

School coming around is what triggers a Diabetes stress overload for me too. How do you write years of experiene and knowledge in a book for someone to manage from? You just cant the same. It IS stressfull, we know numbers will never be as managed as they are at home. That really angers me too! ((HUGS)) Good luck finding what works this year!

Anonymous said...

Nikki will be heading to middle school this year (giant GULP) but I always had her call me after testing while she was in elementary. I think you are doing a fantastic job and I'm with you - we want the teachers/caregivers to a GREAT job with our kids -

Anonymous said...

Penny,
I'm so glad you found the source of your mother's medical problems. Gallbladder removal is an easy laproscopic procedure.

I think it's awesome that you are starting with Riley about taking control and calling you about his blood sugar checks. This gives him more control and makes him feel important about taking care of his disease. Also, you have more control and can tell him with your education of HIS diabetes what should be done.

Good luck for the school year!

landileigh

Anonymous said...

Yes, this is what we have always done with the school nurse. There are just too many variables, like you say, and the school nurse has tons of other children to take care of. School nurse last year did not entirely like the idea, but she is now okay with it. I did have to fight for it, but it was already in my 504 Plan. By the end of the year, I felt the new nurse did understand IOB and all the variables and, at this point, I could turn it over to her. By the time you have trained someone fully about D in its entirety, the year may be half over.

Sarah said...

Thank you for sharing your school experiences with your son. My daughter was diagnosed last year at 5 years old. It's so hard to find a balance in caring for her highs and lows, and trying to lead a somewhat normal life. We are homeschooling next year (we wanted to anyway, but D definitely factored into the decision) but needing to hand off care at some point is on my mind. It sounds like your plan is thoughtful and would give you peace of mind. You can always have the teacher take a more hands on role down the road if that feels right. The most important thing is your child's best care. Thank you again. I appreciate your blog. :)

Shannon said...

Wow, you've got a lot going on.

Good luck to Holden! I hope these are the start of some of the best years of his life (I know my college years were some of the best for me).

May your mom bounce back quickly after the surgery.

D takes constant vigilance and it's tireless. UGH. I hope the 2nd grade suits him well, D-wise.

P.S. Jessica is starting 2nd grade as well :)