When Diabetes Goes Bad

            I do my best to see the times that diabetes goes bad as a learning opportunity. It may take a few days for the lesson to become clear but there almost always is something to be learned.

            To say that this past week was like living through hell would be an understatement. I am still recovering from the nights of little sleep and the days of trying to keep my calm because Deacon’s erratic numbers were causing him to be very cranky. Oh so cranky…I am fortunate enough to know how his crankiness works and how long it will last once his numbers start regulating again. Deacon seems to be whiny, teary and wanting to have a tantrum for 24 hours after he starts to stay in the 100’s.

            This week of illness started last Friday when Deacon developed a cold. At the time the only symptoms he had were a very runny nose and a sore throat. The cold symptoms went away over the weekend, but on Sunday afternoon I started seeing the highs. I changed out the site and started a brand new vial of insulin. He started going low, so I started a temp basal. When he woke up Monday morning with a 307, I thought the temp basal I had started that night contributed to the high.

            Monday went from bad to worse within a matter of a few hours. Alex was upset and kept sighing at his breakfast (He wanted something else to eat.). I spent close to an hour at the store and still forgot something, I broke a plate while feeding the cats, and within ninety minutes of dropping off Deacon at school, the morning nurse called and said, “Deacon is 309 and has large ketones.”

            At 9:45, Deacon and I walked through our back door, and I had to remind him that he could not play the Wii until the ketones had cleared. By 11:00 the ketones had become a trace and his number was in the low 200’s. I began to breathe a sigh of relief and started on my class work while Deacon rested. I thought that everything was going to be fine. Diabetes had other plans. At noon, Deacon was climbing back into the 300’s but still there were no ketones. I treated the high and got him to rest some more. At 1:30, I tested him and he was 595! Okay, I decide it is time to change out the site again. Does this work? Only temporarily. He came down for a little bit but only into the 200’s, and he still wanted to climb into the 400’s.

            On Tuesday, I kept Deacon at home from school because of the endless highs. I tried a temp basal but the increments either kept him high or dropped him low. By the end of the day I felt my resolve and patience wearing. I was grateful when my parents agreed to take Deacon for the afternoon on Wednesday. After much imagined head banging, talking ideas over with other parents of CWD’s, and trying to gain some perspective, I chose to move Deacon’s site to his leg. I set my alarm for two hours later and went to sleep.

            My alarm beeped and I tested Deacon to see that he was 54! I treated him with cake gel and sat down on my bed to find that my heart was racing. This wasn’t the “normal” heart race reaction to a middle of the night low. Through my fog I reached for the meter and tested myself. I am 71!  (Not many people know this, but I have Type 2 diabetes. I am very well controlled and am not on medication anymore.) So, I started eating 4 glucose tabs and began to really feel the shakiness of a low. I went downstairs and made myself a pbj sandwich. It was close to 15 minutes later when I stopped feeling my low and I was above 100. I tested Deacon who was 85 but was feeling better. I gave him more cake gel and after that treatment he was 121. I stayed awake until 2:30 a.m. though. Coincidentally the last time I had a middle of the night low, Deacon and I were the same numbers we were for this latest hypo episode.

            Wednesday morning I took Deacon to the doctor and she said that it looked as though he was coming out of a virus and his numbers should start settling down soon. That day he had some more lows and his highs went into the mid-200’s. I sent him to school on Thursday where his highs were in the low-200’s and he didn’t have any lows. Now he is more stable and has stayed in the 100’s since Friday.

            The lesson I did learn through this illness is that there was a pattern to the wonky numbers. As the illness progressed, where the bg’s wanted to climb went from being dangerously high to moderately high and then there were no highs at all. I can see the numbers slowly go from being in the 500’s and 400’s to the 300’s, then the 200’s and slowly lower into range day by day. I am marking this down that way I can look for this again the next time Deacon gets sick.

            It is now Saturday and I am feeling less tired and frazzled than I had on Wednesday and Thursday. Hopefully by Monday I will be back to being my own energetic self. Thank you to everyone who helped me, kept us in your prayers and listened to me vent.

Rehabilitating the Control Freak

"He doesn't seem to have good control of his blood sugars." or "When will he be under control?" or "His numbers are all over the place." are just some of the comments I have heard about Deacon’s numbers since he was diagnosed.
            Control is a word that is verboten in the vocabulary of Type 1 diabetics. There is no control and there are no "shoulds" when it comes to Type 1 diabetes. That was something I was going to learn very fast. If anything I learned that diabetes was the one in control. Diabetes may allow you to think that you are in the driver’s seat but it will remind you at least once a week that you are just a backseat driver.
            Before Deacon was diagnosed, I was a closet control freak. I wanted everything to be perfect. The kids were to be dressed nicely. Our home was to look clean for visitors. The kids were to be well behaved while out in public. Not only did I want things perfect, I wanted things planned. I was a serious planner. I hated surprises and schedule changes. I liked to know what was coming around the bend. Diabetes has changed how I have approached life.
            I am often prepared to drop everything to go take care of Deacon.  I tend to fit into diabetes’ schedule far more than having it fit into mine. After all, diabetes isn't going to stop causing lows and sites will not stop being pulled out just because I have an exam. I did fit diabetes into our meal time schedule but it seems to be about the only thing I could fit diabetes into. I carry a cell phone with me that only those who care for Deacon know the number to. I let the school nurses know when I will not be available that way they can call one of my back-up people. I even made it possible to be more flexible with my time by taking online courses these past two semesters.
            I am still a planner but I am more understanding about changes to the schedule. I have learned that a house can look cluttered and slightly messy because of being too tired to clean properly. Instead of a “once a month” house scrubbing, I do a 3x a year deep cleaning of the house and closets. I still like the kids to look their best but I am not a basket case when Sebastian walks out of the house with holes in the knees on the weekends when we are running errands. I have learned to accept that not everything I want will get done and I may have to find a different time to get it done. . I have learned to try not to plan ahead and to focus on the upcoming day or upcoming few days.  I have become a more flexible, less frazzled mom since diabetes has taught me some important life lessons about unexpected interruptions and I am enjoying life more that way too.

Ipro 2011

            I am scared. Deacon is having this year’s IPro study done and I am being very honest when I say that I am scared of the results. I look forward to seeing the A1c results every 4 months but this blind CGMS study is tying me into a bundle of nerves.

            My voice of reason reminds me that this study will help with the trends that are already confounding me and the ones hidden from view. After all, last year’s Ipro study was very rewarding in what it showed and how it helped. It is fun to see what is going on behind the scenes as it were.

            But last year’s IPro study also showed me every parents of a child with diabetes worst fear. Deacon was dropping at night and he was having rebounds. The IPro caught two different rebounds. (I had known about the lows but when I was treating those lows his body had already kicked in the rebounds.) In some ways it was very satisfying to have proof of the pattern I had been telling the endo about for two years. I had been telling her Deacon rises from 8 p.m. until midnight and then he will drop. That rise is the main reason why I still do not give him anything to eat after dinner time. The endo has since stopped telling me that there will come a time that I can sleep through the night since she saw that trend firsthand.

            For me though, I couldn’t sleep for fear of losing Deacon to a low at night for two weeks. I slept fitfully in between alarms because the endo and I were changing settings at night. I kept listening to Deacon’s breathing for his signs that he was going low. I watched him at night like a new mother staring in awe at her new baby; only I was gripped by fear not awe. The fear slowly abated as Deacon became steadier overnight though.

            But now I feel that trepidation again of what this study will show. Has Deacon gotten to be less wild now that he is another year older? Are there still hidden lows while I do my best to get my sleep at night? How many weeks after this test will I be awake every 3 hours to test?

            As we get closer to the end of this study, I do my best to keep my thoughts light-hearted. After all, it is not always that I get to see what is really happening with Deacon’s numbers. My endo and I work well together at bringing our heads together to come up with new calibrations, and it is fun to talk with her. If what his meter is telling me is right then he is more level than last year, and wouldn’t that be a nice graph to see? If it is less peaky than last year’s, then I am going to put it in my personal drawer to take out the next time Deacon’s numbers are being wonky to remind me that,  “Yes there are times he really is fine and this too shall pass again.”