Friday, May 26, 2017

Low and falling

Today, J ate the muffin I gave him, but when I came back into the kitchen, another muffin was missing. Inquires revealed no one else had eaten it, so I checked J's pump history and saw he didn't bolus for it. So I bolused him, then headed to work.
An hour later, as I was working, I got a buzz from my pebble that he was falling fast. I called to check on him and all seemed fine until the next buzz informed me he was 40 and falling. That is a scary moment for any mom. He ended up low and falling as I held my breath, worried about him having a seizure because he chose to treat the low with cheese sticks! Turned out it was a baked cheesy bread he used, so it had enough carbs, but it took a while to get him up because of the extra fat in the cheese.
I try to educate him on the best choice for extreme lows, but since he can't feel them, he has no sense of urgency.
Scary for me!

Thursday, February 16, 2017

Comprehension

I had no idea how little J understands how his pump and insulin work. I called him from work yesterday because his BG was over 250. He needed a minimum of 5 units on board to get his BG back down to 100, more because he had eaten. I tried to get him to bolus and he informed me he had had plenty of insulin but it kept disappearing. 
He didn't understand that bolusing 8 units 2 hours before wasn't enough. That what mattered was how much he had left working in his body and since that was less than 5 units, he needed more. I explained it to him twice but I'm not sure he understands. 
I'd better live to 120 because I think he will need my help managing his diabetes for the rest of his life.

Tuesday, February 7, 2017

Burned Out!

So this morning I went into J's room to do his morning blood sugar check and I had to kick aside a bag of garbage *yet again*. Because J thinks nothing should ever change and several months ago I made a deal with him that if he would actually put his garbage into one of the two garbage cans that are in his room that I would take the garbage out. And we have been doing that. He hasn't been throwing garbage on the floor, which is improvement. But my job as a parent is to raise an adult, not a forever toddler. 
I am trying to do my job by training him to do more for himself. 
J makes my job exceedingly difficult. Exceedingly. 
I told him it was time for him to start taking his own garbage bags out. After all, I take out my can (we all have an assigned garbage can because I am not a damn slave!) and I usually end up taking out DH's can too because I'm the one throwing the majority of the stuff away and my can fills up, so I throw things into DH's can. 

So, to recap, I'm taking out my can, DH's can and two cans for J. That's a lot of freaking garbage and it's ridiculous because I'm also the one that brings the trash bins down from the road and sometimes I take them to the road when DH forgets. I clean the kitchen, I feed seven cats and a dog, I scoop 6 litter boxes and I work a part time job during the school year and a full time job in the summer. Plus, J's diabetes care which is a full time job all by itself. 
So I'm just a bit burned out right now. 

Back to this morning. I tell J he has got to grow up and do a little more for himself. That I won't be taking out his garbage when he is 60 years old! That it's my job to raise him to be as self sufficient as possible and he is fully capable of taking out the garbage. 

Nope. He pitches a fit about how "our deal is you take out the garbage and I don't throw it on the floor!" <sigh> 
So I charge him $30 and clean his damn room. Then I refill his insulin pump and bolus him because his glucose is high. 

Then! Then! I go out. I leave and I turn off the glucose monitor watchface on my Pebble. Because I am burned out. I am tired of being the one who does almost everything in my household of FIVE ADULTS. Can you tell I'm a bit fed up with my life?!

I completed some retail therapy, bought myself another set of two Manna double walled vacuum insulated water bottles that have carry handles (I love those things, they keep my water cold for hours!) and I just walked around the store until my blood pressure returned to the land of normal. 

Why? Why did my child with Oppositional Defiant Disorder, Anxiety Disorder, Autism Spectrum Disorder have to be the one to develop Type 1 Diabetes? Why couldn't it have been me? And of course since the diabetes diagnosis he is dealing with depression as well. He told me this morning that I'm the reason he thinks of killing himself. <sigh> 

The really sad thing in all of this is I have no idea if he is suicidal or if he is just manipulating me. 
But tonight, I am back in the game (reluctantly) watching his blood sugar and trying to get it back down to 100 so I can go to bed. Some days I just don't know why I try so hard to keep him healthy when it seems like he doesn't care what happens to him.

Monday, February 6, 2017

No artificial pancreas for us

Medtronic is releasing a pump this year that will suspend insulin delivery when the glucose level gets too low, and will increase it when the level is too high. 
It's being billed as an "artificial pancreas". It's not, but people want to hear about how we are getting closer to a "cure". 

It won't work on high blood sugars after eating, only small increases caused by the need for more basal, such as overnight when growth hormones are released and glucose levels rise. 
And it doesn't have the precious remote control the Animas Ping has. The remote control is something we just can't do without. So many times J tells me to "leave my room!" when I'm trying to take care of him. With the remote control I can give him more insulin from outside his room door. Without it, he would have higher blood sugars on a more constant basis, and he would develop those dreaded "diabetic complications" that I am trying so hard to avoid. 

So, no artificial pancreas for us. Not yet. #wearenotwaiting is working on using the Animas Ping as a type of artificial pancreas (an open loop that requires careful oversight and input from the parent) but I am not too sure I could ever manage the hacking required to get that up and running. 

What I would really love is an insulin pump that would allow me to connect it to the cloud so I could give J insulin when I'm not even home. You know, this disease would be so much easier on our family if I was the one that had it. If I could give J my pancreas, I would do it in a heartbeat. It's so difficult to manage a disease for someone else! Especially when that someone is such a difficult person.  

Saturday, February 4, 2017

Tightrope

I know we are doing better than we have in the past. Thanks to my Pebble, I am keeping a much closer eye on J's blood sugar than I ever have been able to before. His last A1c was down from 8.4 to 6.7, which is a great drop! I am very happy with that and I try to remember what Dr. L told me at our last visit - "you are doing a great job. Don't get OCD about his numbers." (that's a summary)

I do try to remember what he said. And I don't think J has hit a blood sugar of 300 since we started using nightscount, which is HUGE!

However, he might just hit that 300 tonight, because he is currently 239 and rising. He was over 200 and just had to have a piece of pie. His impulse control is really improving, it is. But it's so frustrating to me when he can't wait until he has a better level before eating *pie* for goodness sakes! 

I do try to look at how much better he is doing. He actually complained to me that he was going to hit 300 the other night after eating cereal (he didn't, praise God). He never cared what his BG was before this, so it is a huge improvement. 
Cereal is horrible. I am not sure what is going on. For a while it seemed like we had it licked and he was doing well after eating cereal. 
I think we might just need to adjust his insulin to carb ratio (amount of insulin given for each gram of carbs eaten). But it is extremely hard to adjust that when he won't wait long enough after eating for me to determine if the ratio is right! I need him to wait at least 3 hours so the insulin has done all the work it can do in his body, and see if he returns to a good level. If he would just do that, I could adjust his ratio. But no! He eats a piece of pie! <sigh>
And now he is 245 and still rising. Ugh. 

I've got him on that 6 units per hour basal rate to fight this high blood sugar, because getting those little bumps every three minutes seems to work faster than giving him a larger bolus all at once. But I have to stay up until he starts coming back down, because if I left him on that basal rate all night, it would quite literally kill him. 

Type 1 Diabetes is the only disease that makes parents into caretakers, into medical professionals on their child's disease. Into the person on which our child's life depends. Make a mistake and you can kill them. Err on the other side and they can die of DKA or lose parts of their body. It's a tightrope and I would like to get out of this circus! 


Friday, January 20, 2017

Mimicry

J's 20 birthday is tomorrow and he requested a pizza party. So I planned said party for noon. Well, it turns out that since he has his days and nights mixed up again, he expected me to throw a birthday party while he was asleep! He just does not understand why that is incredibly rude. He thought everyone would be perfectly fine with coming to a party that was missing the guest of honor.
My daughter told me she read that autistic people mimic normal behavior as much as they can. They don't understand the reason why people do what they do. I believe it! Unfortunately, J is not very good at mimicry.