Well, it’s Thursday again. This week’s high/low is pretty simple. I managed to make several blog posts this week so you probably can guess what our high was.
High: The Pump is here! We are all super-duper excited about this. I spoke with our rep on Tuesday and she is calling tomorrow (Friday) to get all of our pertinent information and set up our pump training so we can get this show on the road! I am hoping next week I will be telling you our high is that we did training and Angelina is hooked up (even if it is just a saline trial). I’m not holding my breath on that one though, although I have my fingers and toes crossed. If we get training done next week, and start the saline trial then we should be done with it by her next endo appointment on July 25th and hopefully she can start for real by then. In the meantime I have been having her “wear” her pump just to get used to it. It comes in “demo mode” which means we can play with it, change the settings, give boluses (that don’t really put out anything, but does show how it works and then will calculate her insulin on board for us), use the bolus wizard to calculate the recommended dose, etc.
One thing about the pump that I am excited/curious to learn about what is referred to as the “sensitivity factor”. Which basically means how her body responds to insulin. How many points does her blood sugar drop with 1 unit of insulin? Well, I have no idea. So I read “Think Like A Pancreas” which has some complex mathematical formula that you’re supposed to do to get a starting point. (Okay, it’s simple division and multiplication, but still… I’ve done more math in the past 3 months than probably the entire year before that and my brain is getting fried. I am not a big math person.) I also know what her current sliding scale correction is, so I did the math and I checked it against her current correction scale and found a sensitivity factor number that closely matches both. What I like is that I know what her correction scale is, and I can look at the bolus wizard suggestion and weigh it against that and know whether we are doing it right or not, lol. Of course, I can’t give her 2.6 units in a syringe, but it kind of takes the guess work out of “Do I go up to the next full unit or stay at the half unit dose?” It’s nice to kind of take the guess work out of it though. And this way we are more familiar with how it works, etc before we even do the training. I love how it breaks down what the insulin is going towards. So, 2 units for food, 1 unit for correction. I also love how it tells you the insulin on board, as that is something that is tricky when on MDI. You would have to be Sheldon Cooper to remember exactly what time you gave the last insulin and how much should still be active at any given time to avoid stacking. But, this makes it a little easier. Someone should come up with a diabetes calculator that does what the pump does, except doesn’t deliver insulin. To be used by people on MDI who still want to keep track of everything. It shouldn’t be that hard in theory, right? The technology is there, just take away the dispensary part of the pump.
When I spoke with our rep on Tuesday she said she would be going over the contents of the box with us on Friday and discussing how to turn the pump on, etc. I just kind of laughed and told her I already had the whole thing set up and we’ve been using it, just without it being hooked up. Obviously there will still be a ton to learn, but most of what I have left to learn about it is going to be trial and error. Like knowing when it’s time to change an infusion set if her numbers are higher than they should be. And, of course, learning how to do a site change. In theory I know how it works, and I’ve watched several Youtube videos, as well as the online training videos on the Medtronic website. In practice though, I haven’t done it yet. Angelina won’t let me put an infusion site on her until it’s actually time to hook up. I asked if she wanted to do one on me, which she said no to. However, she said she would do one on Daddy. Daddy wasn’t interested, lol.
So, the low for this week:
Monday David decided to stay home from work. The month of June is always super crazy busy at his work and he worked almost 3 weeks straight without a day off. Last week alone he worked 96 hours. He also came down with a cold last Friday so when Sunday was over (last day of the quarter) he told his supervisor he was taking sick time on Monday. We decided to go out for lunch and Angelina wanted pizza. If you’re a t1 parent you know what pizza means. If you’re not a t1 parent, let’s just say that pizza is just one of those foods that T1 parents dread, lol. Pizza tends to have a pretty high carb count, but more than that it has a lot of fat in it so it tends to absorb more slowly and often ends with really high BG spikes a few hours after eating it. It’s such a pain because it has an initial spike in BG, just like any carb containing food, but then it really spikes later. The later spike usually occurs after the fast-acting insulin has already peaked (which happens about 1 – 1 1/2 hours after taking it) meaning there isn’t a ton of insulin working hard to counteract those carbs and it’s more of a trickle after that 90 minute mark, while the pizza carbs tend to flood at about that time. So, when Angelina said she wasn’t sure how many pieces of pizza she wanted and asked if she could take her insulin AFTER eating, I said fine. Her blood sugar was in range so I wasn’t too worried about her getting too high before the insulin started working and I figured it could only be a good thing if it peaked a little later since I knew the pizza would.
Well, what happened is Angelina ate her pizza, I drew up her insulin and she refused to take it. This was after eating 80-100 carbs worth of pizza. She decided to crawl under the table and curl up in the corner on David’s side of the booth. David decided that he wasn’t going to play games with her and told her she was getting her shot whether she cooperated or not. Normally I would have tried to talk to her, maybe offer a bribe, but she just totally flipped out and started kicking and yelling and he was just done. D.O.N.E. So he caught her arm, held it as steady as possible and gave the injection. Then it was time to go and she wouldn’t stop having her meltdown so he just picked her up and carried her out to the car. She was not happy, at all.
About halfway home he finally says “Angelina, Mom and I love you very much and we want you to be happy. We’re not trying to control your life. We’re trying to keep you ALIVE and healthy. Because if you don’t take your insulin, you could die. And what kind of parents would we be if we just let you die because you were being stubborn and didn’t want to let us take care of your health? This isn’t a choice. You have to take insulin whether you like it or not. We don’t like it either. And we don’t like fighting with you about it. But we will do what we have to to make sure that you’re safe and healthy. Because if we don’t, you could die.” Now, I know what you’re thinking. That’s a little harsh, she’s only 9. I felt the same way. Until 2 minutes later when she said “You’re right. You’re just trying to take care of me because you love me.”
I’ve read recently that this generation of kids with diabetes aren’t likely to see long term complications and that it’s unwise and unhelpful to tell them they’ll have complications in their 60’s if they dont’ take care of their diabetes now. Because, seriously, I’m a lot closer to 60 than my kid is and I still do stupid stuff and don’t take care of myself and that could have a negative impact on my health later, but right now I’m just living life. So, I can understand that a tween or teen is even less interested in what might happen when they’re older. And talking about diabetic coma or death seems to be taking it a little far, but those are very real and could be very immediate consequences of not taking care of it. Or at the very least a hospital stay with DKA and just being very sick from that. Angelina’s had enough hospital experiences to know she doesn’t want more if it can be helped.
And then I read in the past few days about 2 seperate cases of parents being prosecuted for murder and neglect for not taking care of their kid’s diabetes. In one case the parents refused to seek medical care for their child, who was obviously very sick, and opted instead to pray over their child, who eventually died. She was in DKA. She had never been diagnosed with T1, but that is what the diagnosis was after she died. Most parents would have taken their kid to the dr or the ER.
In the other case, a woman has been charged with gross negligence and her child is currently hospitalized and not expected to live. Apparently the child had known T1, but the mother wasn’t giving insulin and hadn’t checked the child’s blood sugar for around a week prior to the child being taken to the hospital because someone else called 911. The article I read didn’t have a ton of details as to why the mother wasn’t giving the child insulin or checking their BG. It did state that the mother had asked for a ride to the pharmacy to pick up some insulin on the day that the roommate called 911 and the child was taken to the hospital. It’s just so very sad.
I’m so afraid of someone trying to call child protective services on us because Angelina is causing a scene in a restaurant (this wasn’t the first time, unfortunately.) and we end up having to restrain her to give her insulin. But then I read things like the above and I just feel like I would rather “get in trouble” for doing what needed to be done rather than my child getting sick and possibly dying because I did nothing. And isn’t it messed up that I even have to worry about any of that? That if I provide medical care against her will I risk being accused of abuse, but if I don’t I risk being accused of medical neglect? I just wish things could be simpler. I am hoping the pump helps.