Nothing will be normal as we were used to for the first 5 and a half years of our sons life. While he will return to acting normal as he mostly has already, there is a new normalcy that we will all have to live now. That new normal includes daily blood sugar testing and daily insulin doses. The blood sugar testing, the activity we revisit most often on a daily basis, has become routine and hassle free. All we have to do is let him know its time and he comes over, offers up a finger of his choice, and we are done in less than 10 seconds. The other part, twice daily insulin doses, has been a struggle. Up until yesterday night, my wife and I have had to resort to holding our struggling, screaming son tight while we do our best to inject him as painlessly as possible. I know our son can do this as there were a few times in the hospital where he didn't struggle and didn't complain about it at all. However, at home, its been a 20 minute ordeal every time complete with delay tactics on his part and tears of pain and anguish on ours. Pain and anguish from the fact that we actually have to restrain our son while he emits blood curdling screams in an attempt to not get the insulin. There are no other alternatives yet. If he doesn't get his insulin, he has to go back to the hospital. Yet, last night, for the first time, we came up with a new trick that actually worked and prevented us from holding him as tight and for his part, was painless. The trick? It wasn't buzzy the bee, a little vibrating device that is held on his arm to distract him from the prick of the needle. Rather, it was holding an ice pack on his arm to numb the spot where the needle would go in. Much to his surprise, he felt nothing. Before he knew it, we were done and he actually questioned whether or not we had injected him. So for now, at least, we have a solution. But that is merely the tip of the iceberg in what will have to change for him, but as have to constantly tell both ourselves and him, we have to take everything one day at a time.
Our new normal in terms of lifestyle will take a bit of getting used to, but it won't be that hard in a month or two. He has actually been great with it and with it only being a week so far, we are well on our way to establishing a new routine. The new normalcy we are still seeking in terms of our son, however, is a return to a stable, safe, blood sugar level. Over the past week, there has only been two instances where his blood sugar dipped down below 200, edging closer to the range of 70-160 that he will eventually reside in, hopefully without incident, for the good remainder of his life. Currently, we are excited when we can keep his blood sugar between 300-400. For those of you with any knowledge of blood sugar, that is an extremely high number for almost anybody. Yet, that is that average for our son at this point, a game of Russian roulette we are playing with the doctors and his insulin doses. What is the magic potion that will get his blood sugar down and keep it down accompanied by a given amount of carbs dispersed throughout the day. For now, it is up and down. A few dips into the 200 range, multiple spikes into the 500 and 600 range. And yet, there is no cause for concern yet. They are slowly going lower, and hopefully within another week, we will not have to see spikes above 300 anymore. For us the bigger issues is the ketones in his blood. When he went into the emergency room last Monday, he not only had high blood sugar, but he was also dealing with ketone acidosis (or something like that) where his blood was actually turning acidic in its effort to rid his small body of all the extra blood sugar. That is the main area where he could run into trouble right now. The high blood sugars are not a big deal as we are giving him the insulin to help break them down. Luckily, his ketone levels have been low throughout the past week and we have no major cause for concern. Lets hope it stays that way. We are seeking that new, low (but not too low) normal blood sugar level accompanied by an absence, or at least as close to an absence as we can possibly reach with his ketone levels. Now to dispel some myths.
I could probably write a whole new post about this, but I figure I will just address it now. My wife and I have both been the recipients of questions on how our son could be diabetic when we look so thin and healthy. Well, our son has Type 1 diabetes, the one that about 4% of the population is born with, that relatively little is known about, and does not "turn on" based on diet or lifestyle. In our son's case, they suspect it was the flu that he had about a month prior that actually kicked the diabetes into high gear. They think that as his immune system was attacking the virus, it also began attacking what it saw as a discrepancy either in his pancreas or region close by that caused his body to stop making insulin. It is not like Type II diabetes that is completely dependent on lifestyle and is preventable if a person has the will to do so. With Type 1 diabetes, he actually needs to eat a certain amount of carbs to provide his body with the proper type of energy, it just can't be too much or too little. That is where we need to be more cognizant. However, over the past few days, we have figured out that what he has been eating on a daily basis for almost his whole life, gets him within the range he needs to be. So our healthy eating will actually make things easier for all of us. There isn't too much we have to cut out yet, we just have to make sure he doesn't get too many carbs throughout the day, which so far, is relatively easy. So there is the myth dispelled. There was no way of preventing this, and no way of knowing that he would actually get it. We just have to live with it now. Our exhaustion as parents will subside (maybe more for me than for my wife), but it will subside. The biggest thing we will have to be on the lookout for is when his blood sugar dips too low. Luckily, we don't have to worry about that right now as we are still trying to get his blood sugar down. One day at a time.