Wednesday, May 18, 2016

How many times do you get up at night?

    This is something that most parents of type 1 diabetics know, You will get up at night to take care of your child. This is a fact you accept right from the beginning of diagnosis, like it or not. When I was with William's mother I got up with him every night for the years that we were together.  There wasn't much help and it was exhausting and draining on my soul. I remember her asking how I could fall asleep so fast when I went to bed. I was so tired all of the time it was hard for me to stay awake. Maybe the right question should have been how do you stay awake? I used to wait until 11:00pm to check William. Then I would get up at 2:00am to check him again. That was if things were going as planned through the night. If he was really low or really high then I was not getting much sleep that night. 

    William now has a continuous glucose monitor (CGM). It is helpful at night and during the day. It allows me the comfort of knowing that I will get an alarm if his blood sugar is going in the wrong direction. William is good about telling you when he feels low. He is not so good about telling when his blood sugar is high. His old pump had alarms but they were only on his pump and not very loud. This was especially true if William was sleeping on his pump. I had many nights where I would hear phantom alarms and go in to check him. This time around I purchased a separate monitor that I can keep next to my bed. It wakes me up and allows me to sleep more soundly. The CGM is still integrated into his pump and will alarm, but having the one next to my bed is awesome. 

    This week I have had most of the week with late nights and many wake ups. We have noticed over the years that as you get closer to the last day before a site change the insulin becomes less effective. If you go past 3 days then all bets are off. We have also observed that when you change a site that the new insulin is more potent and you may see more low values the first day. So this week was a little of both. When I changed William's site this week the insulin had gotten less effective so his numbers where higher than normal. They were not terrible but it was frustrating that no matter how much insulin I gave him he was still floating around 200. I changed his site right after breakfast before school and then he was low at school the rest of the day. Tuesday night was great. William hung around 112 all night long. Then yesterday he was low again all day. I gave him food for free and it still had not effect on his blood sugar numbers. I spent last night correcting low blood sugars and keeping him above 80. Some nights this is a real fight and last night was one of them. 

    I would rather loose sleep than loose my son. I gladly give my sleep time to keep him healthy. It does get tiresome at times, but he is my son and he is worth it. There are many nights where I go in and check him or adjust him overnight where I am sure he doesn't even know that I was there. As he has gotten a little older I have noticed that it is a little harder to get him to wake up at night if I need him to eat something for a correction. This makes me worry about when he gets older and if he will wake up on his own to take care of himself. I have to admit it does scare me thinking about that. I know that William is not the only diabetic on the planet but he is my son and I will always worry about him. We are really looking forward to the days when we do not have to worry about diabetes ever again. I wish for this in his lifetime. 

Interrupted sleep is better than no sleep,

Your Loving Dad  

Monday, May 9, 2016

Field Trip to Meijer Gardens

Learning about Levers.
    A few weeks ago we went on another field trip with William's school. We went to the Meijer Gardens. There where a lot of cool things to see. I had William and one of his other friends from school that also has Type 1 diabetes. We went to Meijer gardens because the class was was learning about simple machines. We were there with a few other classes from William's school. They had a session there where they discussed the simple machines that William's class had been learning about. They had demonstrations of actual simple machines they had set up. We went into a farm house to learn about levers and incline planes. Then we went to the barn to learn about pulleys ,screws and wedges. The student got to learn how hard it is to pick up a box of rocks without pulleys but when you add a pulley system how much easier it gets. It was good to see all of the students so interested in learning and trying out the different activities they had set up.

This was my Favorite
Beautiful Butterflies
    We also got to see some pretty amazing things. We got to see the butterflies are blooming event that they had going on. It was pretty cool to see all of the butterflies flying around. There where so many different butterflies. William and his friend took the book that they gave out as you went into the exhibit and tried to identify the butterflies. It was amazing to see them open the book as we were looking at a butterfly and try to find the picture that matched the butterfly. They would call out what they thought it was and quickly move on to the next one.

This was a very cool Replica.
    We also got to tour the rest of the campus. They had a Japanese Zen garden. They had a sculpture garden, and a kids discovery zone. We got to see so many different things this day. By the end of the day my feet were tired and so were the two young men with me. Diabetes was kind to all of us this day. I only had to treat a low for William and his friend one time and their number were good the rest of the day. We learned a lot and got to see some beautiful things as well. I love being part of seeing William learn and grow. It was a long but fun day.

I hope we have many other fun adventures,

Your Loving Dad

Wednesday, May 4, 2016

What is up with Hamburger Buns

    I would say that we have a pretty good handle on type 1 diabetes. If you are part of this community you know I say that with caution and expectation that highs and lows will come out of nowhere and for no real reason at all. We have been successful at maintaining William's A1C below his endocrinologist goal for many years now. It is not easy and it takes a lot of effort and lost sleep to get there. I also believe that my experience as an engineer also helps. I see trends and trouble shoot machines all day long. I am able to understand what is expected most of the time and make adjustment for that. The continuous glucose monitor is also a very effective tool to see if what I believe is going on is actually what is happening. If I have a basal rate set I do not expect to see his number change much during that period. I test this on weekends where I can let William's meal times slip a little. It is a continuous evaluation of data with all of the factors taken into account. It is relentless and can get overwhelming at times. That is our life.

Having a Little fun at Robotics
    There are things in life that make people wonder every day. Since we are submerged in this type 1 diabetes life, we do not get much of a break so we think about it a lot. The things that make me wonder happen to be simple things. One thing I know is that if William eats pizza or a hamburger bun we will pay the price all night long with high numbers, most of the time (this is type 1 diabetes we are talking about here). I am amazed that I can give William anything on a bun and his numbers will be great for hours after eating. He even goes low at times but when he goes to sleep it is like someone is sitting on the side of his bed feeding him carbohydrates all night long. He had a hamburger last night for dinner. It was a very simple hamburger, ketchup, bun, cheddar cheese and a hamburger patty. I gave him the dose of insulin for his food. He was low for the rest of the day and for about an hour after going to bed. Then all of a sudden his numbers started to skyrocket. It had been about five hours since he ate the bun but here it was letting us know it was there. The rise in blood glucose was expected but I am still amazed every time. I do not let William eat buns or pizza often because it is bad for his health especially on a blood glucose level. I do not feel good about him sleeping all night with elevated blood glucose. It makes me feel like a failure to know that I could have done something about it. So last night, as I do with any night he has pizza or a bun, I was up most of the night adjusting his blood glucose to keep him from going through the roof.

    In this world where there are loose rules and you can go into the twilight zone at any moment, there are some things that stay the same. If you are willing to accept that these are vague rules and things change all of the time, you might not go insane. I lose sleep and watch William's numbers as closely as I can. I want to deliver him to the point where he is responsible for his own care in as good of health as I can, even if it takes away years of my life. It is a price I am gladly willing to pay to make his life as good as possible. I want him to feel as normal as any other person he passes and that includes eating pizza and hamburgers with buns or being a monkey at robotics.

It is like shooting at a moving target,

Your Loving Dad

A Story by William

William's letter about Lucky     William sat down yesterday an wrote a letter about Lucky our dog. He wanted me to publish it. So ...