Friday, February 24, 2006

How it's going

First, let me say thank you for all your advice to my last post. I really do appreciate it. I am much better now though. I was just having a terrible day that particular day. I was much better the next morning. Blogging is actually my therapy I think. I also think it's OK to feel bad some days. Every day cannot be a winner. No one should expect to be happy all the time. I'll settle for most of the time. I am happy most of the time. I am blessed with a wonderful husband and the best boys in the world. I have a roof over my head and food on the table. My son does have a chronic disease, but it could be a worse disease. There are so many things worse than diabetes. Diabetes is tough and a lot of work, but Riley can live a long and happy life with it. There are parents out there who can't say that about their children and their particular disease. I had a pity party for myself Tuesday. Then, I picked myself up and moved on. Party's over.

First, before I get on with how the pump training went, I want to update on Holden's ballgame. He played in the championship game Saturday. They lost, so they came in 2nd. Not bad, but a win would have been nice. They gave out trophies after the game. Holden got two, one for all-conference and one for all-tournament. I'm very proud of him. I think I'm now going through basketball game withdrawal. Holden has played baseball every other year, but this year he has decided not to play. He's pretty good at baseball too. He's been playing since he was 6. He has decided that it's not fun anymore. I think he plans to play rec. baseball in the summer, but not at school this year. I'm going to try to find a rec. basketball league to get him into. I don't want him just sitting around on his butt until summer gets here.

OK, now for how the pumping is going. So far, so good. We spent about 2 hours learning the basic features of the pump and programming it. Michael, my mom, Holden and I all went. They had an extra pump there, so Mom and Holden took turns programming that one. Then, when it came time for the insertion, I did it. He has the set in his buttock. The endo. recommended he sit in someone's lap for the insertion, but Riley preferred to stand. So, he stood, I inserted it and he didn't even flinch. Didn't even act like I'd done anything at all. He's such a big, strong, brave boy. He just seems to have the attitude that "you gotta' do what you gotta' do" and I hope he stays that way.

One thing I really liked was that the endo. had ordered for his basal to be 0.1 from 8 AM to 7 PM. Then, from 7PM to 8 AM, he would get 0.05. That's a basal of 1.5. If you add what he normally gets for meal boluses then it would be a total daily dose of 3. He only gets 2.5 now. I told the CDE that I felt like that was too much and I would rather have him run high and have to increase than to run low and have to decrease. She said that the endo. was very flexible about what we thought the child's needs were. So, he has a basal of 0.05 from 8 AM to 7 PM and 0.025 from 7 PM to 8 AM.
That's a TDD of 2.375. I'm much more comfortable with that. She also took our input on how to set his sensitivity factor. It's very nice to have an endo. and CDE that realizes that we live with this everyday and actually know what he may or may not need more than they do. They know more about diabetes than I do, but realize I know more about my child than they do. I really like that.

So, after the insertion, we put the pump in his pocket and off we went. He was wearing jeans and the pump fit quite nicely. I was worried that he might pull the site out when he went to the restroom. But, we've learned that the tubing is plenty long for him to pull his pants down as usual and still keep the pump right in his pocket. He has the pump in the clip that came with it. We clipped it to his pajama bottoms last night and he slept just fine and the pump stayed put. My mom is currently working on a pump pack for him to wear around his waist. We're going to see how that works for him. They are kind of expensive to buy and my mom can sew, so we bought the stuff yesterday and we'll see how it turns out. I'm glad my mom can sew. I cannot sew at all. When Holden had to have a gingerbread costume for his kindergarten play, my mom did it. If I had to do it the poor kid would have been laughed off the stage. His site looks fine from what I can tell. He's done great with wearing the pump and still getting injections too. I had worried about it, but I talked about it with him so much that he just seems to accept it. I can't wait to be able to just push a button on the pump and give him insulin instead of drawing it up (hoping it is actually a half unit) and sticking him with the needle. He's done really great with it. Last night my husband came into the living room smiling. When I asked why, he said Riley had just looked at him and said "I'm so glad I've got the pump." That was music to my ears. I'm so glad he has it too. I know it's not a cure. It's not even close. I still have to guess about what to do with his insulin sometimes. But, for a kid his age, the dosing is so much more accurate than what he can get with syringes. I won't have to fight with him anymore to get him to eat when he's not hungry. (Had that battle at breakfast again this morning.) He can eat until he's full and then he can get a small enough amount to cover it. I've read enough blogs of people with pumps and parents of kids with pumps to know that it is not even close to perfect. There will be highs and there will be lows. But, now when it's high I don't have to give him insulin that I know is going to drop him too low. I can give him what he actually needs. I guess the hard part is still figuring out how much he does need. But, for now, I'm excited and I'm thankful that this technology is available for my son.


Sandra Miller said...

"I'm so glad I've got the pump."

That boy's comment just brought tears.

What an amazing little guy!

No surprise there, given that he's got a pretty amazing mom.

Keep doing what you're doing-- and yes, that includes allowing yourself to feel bad about this stuff every so often. Penny, it hasn't even been a year since Riley's diagnosis-- I'm sure you're still working through the grieving process. I don't think you'd be human if you weren't.

And you know, some days I find myself doing the same -- not as often as I did in that first year -- but still, there are those days when the thought of my son having this disease for the rest of his life is almost too much to bear.

But then, I do what you've just written here-- think of all of the wonderful things I have in my life, and know that we are very, very lucky.

Shannon said...

It sounds like you have a realistic grip on what life will be like with the pump. The biggest hurdle is realizing what the capabilities of the pump are and you've done that early in the game.

You guys will do great!

Anonymous said...

There are only a few times in our two years on the pump that Hannah (age 7) has complained about it getting in her way or just being tired of wearing it, but when you ask her if she wants to go back to shots - it is a definite NO. The pump has been a godsend to make our everyday life better and to give us so much more flexibility. I know you will all feel the same too. Make sure you use Dr M to help you make adjustments to basals and bolus rates. Don't ever hesitate to ask for her help - she is worth all the trouble of her office issues.

prayergal said...

Woo-Hoo! so glad you have the pump. I am way behind on reading your posts and see I have missed a lot. Our family has been and is still going through a horrendous virus. Your uncle is in bed right now with it. I have not gotten it yet and pray I don't. While I had a few minutes before getting ready to go to SS, I decided to come here and catch up with things. Tell Holden I am very proud of him and Riley too. Riley is such a trooper. I am amazed at him and how well he has adjusted to everything that has been thrown his way since October. As always you are all in my prayers daily.
Love you,
Aunt Linda