Monday, August 23, 2010

I am my sons Pancreas.

I was recently asked why I change out Justice's sites, tubing, and check ketones so much. Well theres a simple answer for that. He has diabetes. Hes on a pump. Its a man made machine that is NOT perfect and shit happens. I am his pancreas.  I try to minimize the issues we have with diabetes. What do I mean? Well at the FIRST sign of a high blood sugar, start of a low, or a possible illness I start trouble shooting and handling the problem right away. I was told by many diabetics and parents of diabetics, to make sure I read "Pumping Insulin", before or when we started pumping. Well, I did. Right away, cover to cover in 3 days. One of the BEST things I took from it was on page 241 I believe. It discusses what to do in the event of an unexplained high blood sugar, to PREVENT DKA and further issues.

In a nutshell it said "Two readings over 250 or one reading over 300 calls for a site change, and possibly new cartridge". This was also discussed in "Thinking Like A Pancreas". Out of everything that book taught, THIS was one of the most helpful "Rules" I had read. Why wait? Why allow this sugar to keep skyrocketing and start producing ketones, and make my baby feel like crap?! WHY?.

So this became our RULE. Two sugars IN A ROW over 250 or one over 300, and we:

Wash hands, and retest (treating a sugar this high and its false can be fatal).
If sugar is in fact high, correct with syringe. (We cannot rely on the pump at this time, as something may be WRONG)
Check ketones.
Give Justice a bottle of water to sip on.
Replace site and tubing with a new one.
*If I see bubbles, cartridge getting low, or its close to the last day, I replace that as well.

I know it seems like WOW, you do this EVERY TIME? But yes we do. Its rare Justice will run high for more than one test or at a 300+ if something is NOT wrong. By doing these things we are stopping the blood sugar in its tracks! Not allowing it to go up and up and up. By checking ketones we are also taking preventive measures.

Why wait a few more hours? What happens if then sugar is at 450 and ketones are large? What have we learned by waiting? What have we gained? Nothing. Now yes sometimes we change everything out, and he is still running high. We then handle that with small corrections and an increased basal over a few hours, this works for us. Every D is different, and you need to find what works for you and or your child.

The reason I am posting this, is because I have heard horror stories. Things that I feel could have been prevented, lives saved, and time not wasted. Just as quickly as we give our children sugar to treat a low, we should be troubleshooting why they are high. We don't have the "luxury" of lantus while pumping, there is no long lasting insulin or safety net as I like to call it. If something goes wrong and that fast acting insulin delivery is disrupted, then theres NOTHING.

 I am my son's pancreas. Obviously I am not as gifted as an actual one, and I have waaaaaaaaaaaaay more gadgets I have to use to attempt to achieve the same effect, but I am his pancreas. So is my husband.  It is our DUTY to ensure that we working 24/7/365 just like the Pancreas of a Non diabetic. To me this means if something is wrong, we fix it now, we don't wait.

In my heart I believe this goes not only for parents of young children with diabetes, but children at any age with diabetes. As well as adults who are diabetic. Its our jobs to take care of ourselves, and our children. We have to take on this huge job of being an organ, lets do it with the utmost diligence. If all pancreas' waiting to handle a high "sugar" then everyone would have diabetes wouldn't they? Hmm...

This is the hand we got dealt. We have no other choice than to face diabetes head on, and go about our lives. In my opinion, doing so with your head held high, and being able to say " I did everything I could to fix this", is  gold. I know then if he is still high its not because I didn't take the time to fix it, or trouble shoot its cause, well he has diabetes. Then we can move on to what do we do now?

Everyday is a challenge, with different variables and obstacles. I haven't slept in 7 years, Justice has only been diabetic for two. Yes I know. But once Synsyre was out of diapers Justice was on insulin. I walk around exhausted, scared, frustrated and sometimes angry. But I never let Justice or diabetes see that. I walk in there like I own the place. Hes my son, and since YOU aren't doing your job (Pancreas) I will. Fuck off. I ain't goin' nowhere. How can I?



Fiona said...

Great post! I had the same take aways from those books.

Reyna said...

DITTO Alexis!!! And I love your "colorful" language. You are a girl after my own heart. Just wait til you hear what a shitty pancreas I was today...and then there is a Sour Patch Kid story that Joe wants me to post...UGLY....:(

Heidi / D Tales said...

Justice is a lucky guy to have you as his mom! :)

Alexis-Nicole said...

Thanks ladies for the support and kind words, Rena I feel the need to talk how I feel so...

I am on way to visit your blog.Hope things are ok!

Anonymous said...

I am ashamed to say we are not as proactive. We pretty much put an increased temp basal on after the second high and will change at the third high. But, if high, we check every 1.5 hours. BS often does come down after the temp basal is increased. After reading this, thinking I should put the temp basal on after the first high, then go ahead and change at the second. You take such good care of Justice and are a very good substitute pancreas.

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