Wednesday, March 12, 2008

"Don't Be Afraid"

She's smiling.

Which seems a little surprising-- given the number handwritten in black ink on that sheet of paper sitting on her desk.

"Joseph, you've gotten so big!" she says enthusiastically, "I wonder if you can you see over my head now?"

Immediately, my son leaps out of his chair.

Standing directly in front of her, it's clear that Joseph is now several inches taller than his endocrinologist.

"Oh my!" she says, red-faced and laughing. "I think we can safely say you've begun the adolescent growth spurt."

With these words, Joseph throws his arms around his endo -- giving her a huge bear hug -- then, grinning, returns to the seat next to mine.

He's growing. That's the most important thing.

I tell myself this over and over while smiling at the two of them.

But then my eyes wander back to that sheet of paper.

To that number.

"Yes," she says with a nod, "we did see an increase in the A1c."

Joseph's head snaps up.

"From 8 to 8.5."

And now the only one smiling is Joseph's doctor.

"I'm not worried about this," she says, noting our somber expressions.

"A number of things are going on here. First, it's obvious that Joseph saw periods of rapid growth since his last appointment. This is probably the most significant factor."

She pauses a moment, thumbs through Joseph logbook, and then continues.

"Now, according to the log, you had a problem several weeks ago with a leaking cartridge..."

"That's right," I say, remembering that awful night.

Blood sugars in the 400s, followed by corrections that had no effect-- injections, a site change...

And finally, the anger and shock at finding his meal and corrective insulin clinging to the sides of a soaking wet, almost empty pump cartridge.

Our son hit a diabetes milestone that night-- moderate ketones.

"Keep in mind," the doctor continues, "blood glucose over the last month will have a greater impact on the A1c-- so this 8.5 is partly due to that incident."

Joseph says nothing, but listens intently.

"So what can we do?" I ask.

"You increased Joseph's basal rates three weeks ago-- and those new rates worked well for a while, but the highs are returning. So I've raised them again-- overnight and early in the morning. That should help."

She hands me the sheet of paper with Joseph's new rates-- and his A1c.

"Understand," the endo goes on, "you're probably going to need to increase his basals every two weeks."

And now my head snaps up.

"Don't be afraid. You need to do this, Sandra."

"But every two weeks- "

"He's going to need a lot more insulin now that it's clear he's entered puberty in earnest. And the amount he'll need is going to keep changing as he grows."

I know she's right.

The ridiculously frequent, insulin-resistant highs we've seen over the last three months made that perfectly clear.

Walking out of the clinic an hour later, carrying his new basal rates -- and the weight of that number -- I can still hear her voice.

"Don't be afraid."

But, I am afraid.

Not of making changes, nor of working harder.

No.

I'm afraid of that damn number.

I'm afraid of what it means might be happening inside my son's body.

I'm afraid that -- no matter how hard we try -- it won't be enough.


13 comments:

Nicole P said...

This one made me cry Sandra. I know EXACTLY what you mean. Those numbers make us think about the inner workings and that's scary.

But your endo is right - you'll do this. And Joseph will be OK.

Sending you good thoughts and lots of love.

Nicole

Jillian said...

I think the future and the what ifs are far worse than the day to day of diabetes. It's such a terrible disease in that way.
This one result does not determine Joseph's future. Puberty is a difficult time for anyone with Type 1, but keep in mind that there are many shining examples through out the OC of complication free diabetics who made it through this time too. Plus you have amazing technology available to help you through this.
Like the endo said, you will be able to do this.
If it makes you feel any better, the other day I found an A1c result from when I was twelve, it was 9.4%. At that point I'd had diabetes for almost seven years, and A1cs floundering in the 8's and 9's. Four years later and I'm still okay. I don't know if it will all come to get me some day in the future, but I can't worry about that. I have today complication free, and I need to enjoy that wonderful blessing.

Sending thoughts of strength and love to you guys!

Anonymous said...

By the time I was Joseph's age I was taking care of my diabetes on my own with no help at all from my family. Let me tell you, going though puberty, and taking care of your own health alone is a tall order. I know many people that are able to keep good control throughout growing up but I was not one of them. My Endo would have been thrilled with an A1c of 8.5. I have had A1c's as high as 12 and spent my teen years in the 9's and 10's. Trust me you can do this and his journey will be so much better and easier with your help. It is a struggle with hormones and it will be much harder to control now but he will be fine even if he gets an A1c that is higher then 8.5 at sometime. it is just one brief period in a lifetime and there is always the next A1c, the next month, the next week, the next day. The fear never leaves but it does get easier.

Anonymous said...

My daughter is a mature 11 yr old and I wonder how long the endo will use the "it's puberty" excuse. Knowing the hormones are messing with the hormone insulin does not bring comfort.

Major Bedhead said...

I would never classify "it's puberty" as an excuse. It's not an excuse, it's a reason. Hormones really DO mess up the blood sugars. We've been battling them here for a couple of years. For a good year and a half, I was changing Olivia's basal rates every couple of weeks.

8.5% is not that high for a kid Joseph's age. I think you'd probably have to completely eliminate carbs from his diet to get it lower. And for a growing kid, that's just not feasible, IMO. I know some people do it, though.

You guys are doing a great job. Try not to beat yourself up too much about the number.

MileMasterSarah said...

My a1c’s as a teen (I was diagnosed at 13) were anywhere from 8.5 to 13.7 (at my highest.) That won’t necessarily make you feel any better, but this is a difficult time for any diabetic. Any time you get bigger or smaller, insulin dosages change and you have highs or lows. I’m still fairly healthy after almost 17 years of diabetes, and I must say that most of my health problems are not a complication of my diabetes but because of back injuries I sustained throughout my life. Hang in there, but please don’t dwell. Puberty doesn’t last forever! (thankfully…)

Tonyia said...

Ahh puberty! Don't you love it! We are still in the middle of it, but not quite as strong and I remember being so fed up with the highs that I set a temporary basal of 150%. Of course, I was checking every couple of hours through the night, but never had a problem. I was totally amazed and shocked at how much insulin a pubescent boy could use.

Hang in there,you are doing a great job...I am told it lasts a few years. :)
Tonyia

Vivian said...

Sandra, Thank you for writing about this. While we are not quite to the puberty stage yet, I so connected with your feeling of what those numbers are meaning inside that sweet boy. I think that has been the hardest thing to deal with, feeling that premature guilt for complications that have yet to happen. The feeling of such responsibility and accountability in each and every number.
I love the comments the others have left here. It is true, there have been so many that have successfully survived all of this and have forged the path we are now on. Maybe we should learn how to use that as a daily affirmation. You are an awesome mom and he has an arsenal of support, he WILL win this battle.
Sending big hugs to all of you.

Sandra Miller said...

Nicole-

Made me cry to write it.

As always, your support means a lot.

Jillian-

I agree with you about the day to day of diabetes being easier.

While most days I'm pretty good at focusing on (and appreciating) my son's complication-free present, days like this one leave me wide open for those what ifs.

Anon-

Thank you so much for sharing your experience.

Anon-

Man, I hear (and completely understand) your frustration.

Julia-

I feel the same about this.

It's cold comfort knowing that puberty is the reason behind these crazy highs-- but damn, I'd rather have a reason than have no idea what was going on.

And thanks for the vote of confidence.

Your view from a bit further down this road really helps.

Sarah-

Thanks. :-)

Tonyia-

So good to read we're not alone in this.

Haven't gone up to 150% yet, but I imagine that temp is coming...

Vivian-

Geez, now you've got me tearing up again. You just know exactly how I feel.

Anonymous said...

When my daughter was first diagnosed, I used to think the A1c was the parental report card. If the number was high, you gat the stink eye from the endo team. And if it was good, I drove home on top of the world. More insulin does not mean he's getting worse. I know you know that but sometimes you need to hear it from other parents who know EXACTLY what you are feeling. My husband had the hardest time giving Sarah her shots in the beginning and I remember telling him, everytime you give her a shot, you are saving her life and keeping her healthy. I am glad I found your blog. Not many people go thru what we go thru in a day. Take care. Barb

k2 said...

Sandra -
You can do this and so can your son!
Be grateful that you and your endo have a plan.

Years ago, (I'm talking like 22,) endos would just tell kids to watch what they ate, and didn't event take hormones into consideration.

I know it's scary, but you guys are doing a great job and he's going to be fine. So r u!
k2

Donna said...

Sandra - I wanted to say something that would be uplifting & encouraging to you. But all I can think to say is that I am complication-free after 37 years with this disease. And the care Joseph gets is so much better than I what I received. You're doing great with his care. He will be fine (even if the teen years are troublesome - mine were, too.) You are doing a great job & he is very fortunate to have you as his mom. You are stronger than you think. Hang in there.

vellavelicious@yahoo.com said...

I just found your blog while looking up consumer report info on insulin pumps. I'll be 32 yrs old next month, and I have had type I diabetes since age 4. I was put on a pump in 1980 (*at that time, they were the size of a VCR tape). I was in great control until puberty. But even with changes in boluses and basal rates, I was able to make it through. At 25, I had NO eye damage, NO kidney damage, No retinopathy or ANY PROBLEMS stemming from my diabetes. I remember as a young teen hearing about implantable pumps and islet cell transplants to cure this evil disease.... and NOW these things are happening. When I was 19, my A1C was 13!! But I wasn't symptomatic. I just worked thru the highs and lows.

My heart goes out to you and your family, May God Bless you. If you have any questions or if there's anything you'd like to ask me, feel free. My name's Leslie. :o)
vellavelicious@yahoo.com