Saturday, August 13, 2016

Our Reality

I have heard how "manageable" diabetes is and how "it's not so bad". I am a positive person and try to always look toward the bright, humorous side or our day to day work with T1D. Although I don't complain about his disease much it takes a great toll on us. 

When you are potty training a child you can complain about it. It's difficult, it's tiresome, you try to think for the child's bladder: when is the last time they drank? should I have him/her try now or wait? This process lasts for a short time then the child is potty trained and you move on to new things. Having a child with diabetes is just like potty training, we are always thinking for his pancreases and making decisions based on what he eats, what he did, what he is about to, etc. The difference is this is not for a short time, till there is a cure this day to day work will not end. Which is why complaining won't do much but drag you down. There is a reality to the disease though that is a heavy burden to carry.

This is our reality: 
In the morning you hope for a number in a range to start the day. You calculate carbs for breakfast and give insulin. Before hitting the "ok" button on the pump you have to think about the day. Will he be running around right afterwards? Yes, give less insulin Is his numbers a little higher than usual? Check his pump to see if it's ok, if it is give insulin but wait 30 minutes (or more) to give food so the insulin can get to work. Don't forget to set the timer for 30 minutes - we don't want him to run low. Between breakfast and lunch you will check his numbers a few times - did the pump work correctly, did you guess the amount of activity correctly, did he have a snack. For lunch you correct any high or take away insulin if he's running low and do the same for dinner. At bed you do another check and cross your fingers for a great numbers so you don't need to worry about his dexcom alarming in the middle of the night. On days of a lot of activity it's possible to go low and he will need juice in the middle of the night. Many times this can be prevented by reducing his basal over a few hours at bed but you have to also hope you did this correctly. 
This doesn't include changing his pump every 3 days which takes only 5 minutes but for him it means a needle sticking him then leaving a cannula in him to deliver insulin. Depending on the area this hurts more or a lot more - it's never pain free. He also has a dexcom inserted, also with a needle, every 2 weeks. These devices make "managing" his T1D much easier. Before his pump he would get at least 5 needles a day and would need to prick his finger at least 6 times a day. He needs blood work every 3 months and visits his endo every 3 months as well. Based on his blood work and what his numbers look like over that time adjustments are made. As a parent you think of these visits as report cards - how well did you take care of your child, it's a long day for both of us.
There is never a time he can just grab something to eat without thinking about carb counts and how much insulin he'll need. There is never just running out the door without all your supplies (meter, dexcom, and something to treat a low). You live your day based on numbers and the ability to react based on those numbers. This is our everyday when things go well. 
Just this week we had a particularly difficult week. In the past 6-8 months Tommy has developed a puffiness to the top of his arms from his pump. We've needed to find a new location for his pump while that healed because the area wasn't absorbing insulin. After hitting muscle on 2 pumps in a row and the insulin not absorbing we got perfect placement on the 3rd pump. It was good timing as we were going to the Crayola Experience that day. We spent the morning bringing down the overnight high and by lunch he had perfect numbers. A short time after entering the play area I heard Brady yelling "Tommy's pump is screaming" and sure enough there was a communication error with his pod and it was no longer working. I had a back up insulin pen with me but that doesn't give him his basal (the insulin that gets delivered every hour). So I kept an eye on his numbers and gave him a shot when his numbers were getting too high. Since we were almost 2 hours from home and it was close to dinner I knew I would need to figure his dinner without his pump to do the math and he would need another shot. We try to bolus him for dinner before hand to keep his numbers steady but when going out to eat that is not possible. We got home and I put on another pump and corrected the high. Four pumps in 2 days! I felt bad for him having to have it changed again and I couldn't help but think about the wasted insulin and the wasted pods that are very costly every month. 
There are days that you want to put your head down and cry but you can't there are always new numbers to look at and new reactions to those numbers. So when people say "it's not so bad" I want to say yes, yes it is that bad some days but what's the sense in complaining. Complaining won't change the disease. Hating diabetes will just take away the energy I need to read numbers and react to them. I want to spend my extra energy loving my son for going through this with a positive attitude. I share this disease with him while his young then it becomes his job to read and react to numbers when he gets older and more independent. If we have a healthy attitude so will he. I will save my tears when there is a cure or when the artificial pancreas is an option for him and I will cry in relief and joy.