We were told repeatedly to watch out for certain signs of low blood sugar and ketoacidosis. Low blood sugar is very dangerous because the brain isn't getting sugar which it needs to run your body and you could die. Ketoacidosis is caused by really high blood sugars and if left untreated the entire system becomes toxic, you could die. Allrighty then. You must maintain a careful balance of sugars in a constantly changing system. To do this, you inject insulin to match food intake. But you have to be careful to consider current blood glucose levels, activity that you will or have participated in as well as like 12 other things like stress, sickness, etc that could change the dynamic. We are 2 weeks into this and the initial shock is wearing off and we are adjusting to the schedule.
As a near and dear friend reminded me- it wasn't so long ago we were entirely overwhelmed by Lily's series of medicines- now that's second nature. It will all normalize. It will. And for awhile- which is to say approximately 3.7 minutes on Monday, I thought there might be a chance that this week would be the week it would normalize. It is not. We went from trying to get high sugars down, to getting low sugars up. Hence the whole balance concept- but sheesh. Phillip was fairly perky about the low blood sugar thing- if you discount the shaky, pale, confused disorientation. Mostly he was game to eat all the high sugar things he could without having to stick himself with a needle. The downside is that his fingers have more pokes than a pin cushion from all the glucose monitoring. Monday night his sugar level did not want to stay above 80, and it is supposed to. Every 10-20 minutes he was complaining of shakiness and looked pale. 2 juices later, we went to jellybeans. Then a granola bar. Then a peanut butter and jelly sandwich. I told him if that didn't do the trick I was going to get him a happy meal and a shake. I saw him secretly praying to blood glucose gods to hold out just a little bit longer- but they- like me were ready for bed. His level got in normal range. I tossed and turned until it was time to check him- wondering if he was dropping and what this meant. Were we in the fabled 'honeymoon" period where the pancreas temporarily works for a little bit before it quits for good? Was he getting sick? Were his doses too high? Was it the exercise? Did he inject insulin into a muscle by accident? I finally just got up and went to check his levels. He was still normal. Ok- at least I can get a couple hours of sleep. Until I hear him in the bathroom. Uh oh. Must be all the juice. May need to rethink serial juice boxes in the future.
Tuesday morning he doesn't look good. He doesn't want to eat after he already had his insulin. I check his ketones, normal. Blood sugar, normal- but will drop with the insulin he took. We switch to tea with honey to cover for the breakfast he doesn't feel up to eating. He spends most of the day on the couch and by afternoon he is better. Then he wakes me last night with severe stomach pains. He is obviously miserable, I wonder if I should take him in or wait it out. He already has an appointment for tomorrow- well I guess it's today- this afternoon. All his levels are normal. We can wait and see. I try a cracker to see if it helps settle his stomach. It does not. We are camped out on the couch- he is feeling horrible and I feel horrible there is nothing I can do. He moans he hates it and it isn't fair. I have to agree. I wish I could take it away, but all I can do it rub his back as he twists and turns. By 3 am he is throwing up. I hope this relieves some of the pain and he can sleep for awhile. It does. I check his levels, still normal. I try to go to sleep, but am lost in worry. A new learning curve, a new set of parameters. Can someone who doesn't have a pancreas left, get pancreatitis? Is this what it's going to be like for every illness? If this is the case, I'm going to need a case- of sedatives. Is it just an average bug? Only time will tell. Maybe next week will be the week. (For the sedatives).
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