Friday, March 10, 2006

It's been a week

I said I'd post every day for a week, well, the week is up. I may take a little break after
this. It depends on if I feel the need to write or not. Sometimes it helps to get everything out. This week of posting was meant to help other parents that might be considering a pump. To let them know what it's like, but I'm afraid Riley's a poor example of the first week on the pump. We've had so many set problems and I know that's not normal. It's normal to have one occasionally, but we've been changing sets every day, sometimes twice a day, like yesterday.

Yesterday started out with high numbers and a clogged set. Things went pretty well after that, except a low after supper. I think his sensitivity factor is too low. I wanted to set it at 300, but the endo. wanted it at 250. I know it sounds crazy, but he's had 1/2 unit of insulin drop his sugar that much before. ( For my family and others that may not know, the sensitivity factor is how much 1 unit of insulin drops his sugars. So , now the pump says one unit of insulin drops his sugar 250 points. So, when his sugar is up it takes that into account when it suggests how much insulin to give.) I'll tell you why I think his ISF is too low. Last night at supper his sugar was 307. The pump suggested .6 units for correction and .7 for his 35g carbs. So, a total of 1.1. That's what I gave him, and 1 1/2 hours later his sugar was 66. This is not an anomaly. It's happened several times. He only gets corrections with meals. I think his ISF is off and not his carb ratio, because if he eats and doesn't need a correction his sugars don't drop like that.

Dr. M called last night to see how things went yesterday. I told her we had to change the set again. She apologized and said she was sorry we'd had such a bad first week and that hopefully it will get better after we get the new sets. She has ordered the 6mm Insets. So, I guess that's what we will be trying next. We got a sample inset (9mm) with his pump. I got that out last night and played with it to get a feel for it. I wasn't trained how to use it, but I think I've figured out how to use it now. It doesn't seem too complicated. Before I use one, I'm going to call the educator and have her talk me through it, so I do it right. I'm thinking you prime the tube just like the other ones, and you load the spring, remove the adhesive backing, place it on his skin, and release the spring. I also think you don't pinch up the skin like you do with the comfort. I don't have the pamphlet that came with it, so I don't know how much it takes to fill the canula, but I'm sure they'll send one with the new supplies.

So, that's where we stand now. I'm not sure when the sets might show up. I think they were ordered on Wednesday night, but it may have been yesterday when they were ordered. So far, his other set is doing OK and if it continues to do OK, I will leave it in until Sunday when it is due to be changed. But, I'd like to have the new sets here so if it does mess up, I can use them.

His sugars did well last night. 177 at bedtime, then, 124, 114 (I gave him a peanut butter cracker that he didn't need), and then 215. He was 153 pre-breakfast this morning. I still haven't gotten into a pumping mindset yet. It's still scary for me to see a sugar of 114 at 4 in the morning. That used to be way too low for him, but I have to realize his basal is lower now at night than it used to be. I'm getting better. Last time I gave him 2 crackers. Maybe tonight, I'll be brave and won't give him anything. But, of course, that means I'll check his sugar more often. I did try not giving him anything one night. His sugars were 150, 127,120, and then 75. I guess that 75 wasn't too terrible for a pre-breakfast sugar. I want it 80-140, but 75 is close enough.

Keep your fingers crossed that this set will last through today. I will consider it a huge victory if it does.


Shannon said...

When Brendon is under 120 at night, we cut back his basal temporarily instead of giving him a snack. If he's under 90, then we cut back AND give a snack. It's really a nightly decision and doesn't always work out that way.

Penny, even though the first week isn't "typical", it stills gives fantastic insight to what it's like to have problems with the pump and how it can be solved or dealt with.

I think problems give more valuable information than having everything run smoothly.

Penny said...
This comment has been removed by a blog administrator.
Penny said...

I can't decrease Riley's basal at night. It is already on the lowest setting. (0.025). We'll, get it straight, though, through trial and error.

The reason I hate having to post so many negatives is that I do not want to discourage others that might be considering the pump. Even with all the problems this week, I feel it is the best way to try to control D. I think things will get better. I know there will be rough patches, just like with injections, but there is no way to dispute that having a pump is the closest thing to having a functioning pancrease without actually having one. It's not a cure and it's not even close to being a perfect system, but I believe it's better. That's just my opinion. I know people that are on injections and well controlled and perfectly happy. But, with Riley's age and sensitivity to insulin, the pump is the best choice for him. But, I guess people considering the pump need to see the negatives of pump therapy also.

Sandra Miller said...

I'm sorry. I was confused in an earlier comment-- thought you were already using the Insets, not the Comforts (I think the sleep deprivation is taking it's toll on my memory... )

Anyhow, when Joseph did one of his saline trials with the Comfort (it was recommended because he was so thin), not only did he not like the insertion, but the darn thing kept coming out!

We've been using the 6 mm Insets ever since... hopefully your experience with these will be similar to ours.

Oh and yes, you do just prime the tubing as you would with the Comfort. Cock the device by holding onto the lined edges while loading the spring, place it on Riley's abdomen, then pinch the smooth, indented edges of the device to insert.

And you are correct-- there is no need to pinch up the skin with the Inset. And to fill the 6 mm canula you push .3 units.

I'm really hoping you all have better luck with these, and am so sorry you've had such a hellish first week.

Hang in there, Penny.

Penny said...

Thank you, Sandra.

BTW, his set has been in all day with no problems. SHHHH, don't jinx it.

Anonymous said...

So sorry you have been having so many problems with site changes. Do you have a Nurse Educator or someone who can demonstrate how to insert the new sets? A picture is worth a thousand words. Will Animas send someone to help you? I know Animas will provide you with a "pump pal" if you call and ask for one. That might be a resource. We had a very good first week BS-wise and then it was hell for three months, high BS at night, site changes every other day -- because we were told to do so if BS was over 280 twice in a row -- her blood sugars were very high and would not come down with insulin but her sites looked fine. We air-bolused, etc. We sent back the first pump because of consistently high blood sugars which we finally figured out were pump-related. Pre-pump, she had been much more stable on Lantus. The new pump they then sent worked out great and there was a definite difference in her blood sugars from that point forward. I'm also wondering if maybe it takes their body a little while to get used to a new way of absorbing insulin. With a pump, they have a very small insulin depot. It took time and effort but we finally turned the corner about three weeks ago. Many, many basal tests. We still keep basal testing. We fix one time period and another time period that had been stable acts up and goes wacky. It's a juggling act. We just don't want to drop the ball! I'm glad to see someone who is honest about pump problems. All I ever see is "Wahoo, we're pumping! Hooray, we are pumping and doing fabulously." Which wasn't the case for us. So tell it like it is. It will not discourage people from pumping. It will show them they are not alone and that pumping takes a lot of work. I don't need to see pump therapy through rose-colored glasses. We know its the best therapy they've got for diabetes right now. We should also know we may need to work through problems with the pump so we can enjoy the benefits.

Scott K. Johnson said...

Hey Penny!

You have been learning a TON with this. And I promise, it won't be this hard forever. Starting on a pump is a huge change, and can be very challenging. But you learn so much along the way.

It may never be easy, but it won't always be this hard.

Another thing is that with Riley's sensitivity, your margin of error is so small. So much tighter than what many of us deal with. The slightest little thing and he's off target by a bunch. That puts a lot of pressure on you, but I really think you are handling it wonderfully.

I think that as he grows, that too will get better.

Just keep doing what you are doing - which is trying your best to do the best, learning all that you can, working to systematically nail down all the variables and ratios, and not be too hard on yourself when it doesn't work out just right.

You are really doing a great job.

Penny said...

Thank you, everyone, for your nice comments.

Shannon, No, I've never been called a romantic. We don't get to see movies very often, so we just picked the two we wanted to see the most. I'm a horror/suspense movie person and Michael is the bang, bang, shoot'em up type.

Again, really, thanks for all the encouragement. It really does mean a lot to me.