Wednesday, July 26, 2006

Finding hope in an email

There are so many things going on in my brain this morning. So much to think about.

The last few days have been very rough as far as diabetes is concerned. Riley had a set change on Sunday, Monday, Tuesday, and early this morning. Sunday, his needle came out while he was using the restroom. It was due to be changed Sunday, so not a big deal. I wanted to change it after he went swimming, but it was OK.

Monday he started out at 121, which was nice. By lunch he was 304. Not good, but these things happen occasionally. He got a correction and a bolus for lunch, but his sugars were still in the 300s (385, 342). I looked at his needle, but didn't really see anything wrong. Later, when I went into the bathroom with him to test his ketones (which were small), I noticed blood in the tube. Michael was working, so we went to my mom's house so she could change the needle. Then, I must have over corrected because he was down to 54 a little while later. Then, 128 and 183. He ate an unusually large amount of food, most of it being carbs. He got the largest bolus he's ever gotten, 2.0. He then spiked up to 315 then 364. A correction brought him down to 272. But, then he went back up to 290, 289, 291. He just wouldn't come down even though we were correcting him. And, this was in the middle of the night when we usually wouldn't correct so much. Eventually, Michael just went ahead and changed the set. He didn't come back down until lunch time and then was 125, 197, 171, 133. OK, now everything was back to normal.

That was until 9:30 that night when he spiked up to 331, he got a correction and 2 hours later was 352. By this point I've had about all I can take and Michael is about to pull his hair out. What in the world is going on? I've increased his nighttime basals already, but it hasn't seemed to make any difference. An hour later, he's 364. How, how, how? I just don't understand. His set looks perfectly fine. But. he's not coming down, again, even with corrections. So, Michael did another set change and another correction. In an hour and a half, he's 190. He woke up at 146 this morning.

I just don't know what's going on. With the exception of the set with blood the other sets have looked perfectly fine when they came out. The insulin is brand new. But, it couldn't be the insulin because his sugars have been fine during the day. It's just the nighttime that his sugars spike up, not just a little, but a lot. I'm going to wait a day or 2 and increase the nighttime basals again. Has it really been the sets or is the honeymoon over? There are so many reasons why his sugar may go up. How do you know which one is the culprit? And, how long must Riley endure these high sugars until I figure it out? I swear if he spikes up again tonight, my head just may explode. I'm just so emotionally drained right now.

It seems that whenever I get the least bit comfortable, just when I think everything is going to be OK, diabetes has a way of slapping me in the face and waking me back up to reality.

As much as I want Riley to have a normal life and as much as I want to fool myself that everything is fine, it's not. It is not fine. It is not normal. It is stressful and draining and a burden that he must bare on his own one day. I try not to think about that often, the future. I just try to live in the present.

But, today, all I can think is one day Riley will be up at 2 AM changing his set in a sleepy fog wondering what in the world he could have done differently. Worrying about what affects these sugars are having on his kidneys and his eyes. And, knowing there's really not a darn thing he can do, but take what life has dealt him and go on.

I am crying so hard now I can barely see the keyboard. I haven't cried about diabetes in a while. It's just so hard. It's just so damn unfair. I know things could be so much worse. But, sometimes I just can't help but think why did this happen to my baby. Why? Why? Why? But, no matter how many times I scream it, there is never an answer.

When I started this post I had some hope. I was actually a little excited. I had just received a response to an email I sent last week. I now have a location for my Lee Iacocca walk. Now, I can start planning. Now, I can ask others to join the team.

Now...I can hope again. I can look to the future and see, not complications, but a cure. A cure for my baby and all the others who live with this disease every day.

7 comments:

Scott K. Johnson said...

Oh Penny - I'm sorry that you're feeling frustrated about things right now. It's Ok - it's normal to feel frustrated.

There are so many things that could be happening right now - one of the first things that popped into my head was just how fast kids grow, and those growth hormones really make you resistant to insulin. It could be something like that.

Also, with him growing, it is a moving target. Great - just what you need to hear right? I'm sure you already know it though.

When I get frustrated, I think about the "old days". Before all these wonderful tools were available, no checking blood sugars, no insulin pumps, no counting carbs - none of that stuff that we all know is so important now.

And there are many, many people that grew up with diabetes, through all of that lack of useful tools, and they are just fine now.

Do the best you can, and don't fret if it's not perfect. And Riley will grow up to be just fine. Sure, he will have days/times when he's frustrated about things too - but diabetes will not be the only thing in his life. Trust me - he will not let it limit him, not at all. He'll find a way to deal with it, just like so many of us do.

Take care - be patient, be strong, and let us know if there is anything we can do.

Elizabeth said...

Penny-
First off, I just want to tell you that you are all doing such a great job. Sometimes your BG doesn't correlate to that, but you are really trying to take care of your son. And from time to time diabetes has a mind of its own.

Reading Scott's response made me think of my aunt, who has had diabetes for over 40 years. She (kidney transplant aside) is healthy, active, and has many years ahead of her. When she tells me about how her childhood was, I just don't know how she made it to where she is now.

It is important to know that even though we have times when its not so great, Riley will be okay and grow up and be healthy. Because with all that's out there now, there's no reason why not.

I hope that you're feeling better!

Caro said...

Ditto to all that Scott and Elizabeth have said.

I am reminded yet again of what a truly awesome task you parent of kids with diabetes face. It is so much harder to figure all this out when it isn't your body it is happening in, when you don't have the benefit of how you feel to guide you.

Sometimes I think back to my own childhood and then wonder if all the reseacrh and technology that is available today doesn't place a greater burden on us all to try and achieve perfection- compared to the "old days" that Scott refers to.

But whatever, you are doing a great job, because most importantly you have a happy son.

Bridgid said...

I am a constant lurker at your site. I also have a 3 year old son with D., Dx'd at 20 months, a teenage girl (17) and an 18 month old. I could have written this post last week! After pulling my hair out, things have settled down and we are back under (pseudo)control. Along with a growth spurt, you might consider early signs of illness (does he have a low-grade fever that comes on in the evening?), or this incredible heat we're having. It seems to affect everyone differently.

Thank you so much for sharing and venting the frustration we all feel with this disease. You are a conscientious mother who is raising a happy, well-balanced, aware, and healthy son. Congratulate yourself every day on your strength and perseverance in this very special assignment.

I am confident that when the time comes and Riley is on his own, he will face his life with the knowledge that it is precious and is to be lived joyfully in spite of the challenge and he will face his D. with the same strength and perseverance you have shown.

Jamie said...

Boy, do I know how that feels to be so darned frustrated you could pull every last strand of hair off your head. It's so hard sometimes .... so hard, and like you, I HAVE to know what the cause of the high sugars are - but sometimes we never know ... the body is a complex machine.

I think you're doing a terrific job with Riley. I try to take the one day at a time attitude, but there are the days where I sit down and wonder what the heck Dani's life is going to be like. I wonder what these high sugars are doing to her little body - it's crazy. You are doing your best and that's the best you can do.

A big hug for you - and good luck with the organizing of your walk!

Sandra Miller said...

Penny,

What you describe in this post is so familiar-- so many times Joseph has had those crazy persistent highs, only to find out that he was going through a growth spurt.

Or (because his insulin needs increased beyond those highs) that he'd likely lost more beta cells-- that his body was becoming less able to make insulin.

Regardless of the reason, it's almost impossible not to get upset and angry when you feel so damn helpless in the face of these highs.

But Penny, please know that you are doing a wonderful job-- you're doing everything possible to care for that boy, and he WILL be fine.

Sending you big hugs...

Penny said...

Thank you everyone for your nice responses and the hugs. The anger and frustration have now passed. His sugars have come back down and life is back to our kind of normal. It was just one of those days, you know?

And, Bridgid, thank you for delurking!