Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.


Monday, June 18, 2007

Grieving a Dying Pancreas

So we have prior warning. Most families don’t get that. We sure have been lucky. And I have a whole heck of a lot to do.

Gracie’s post-prandials have been higher, so it is time to start thinking about:
1. The ins and outs of carb-counting (for a four year old)
2. Obtaining an additional glucagon pen, or three(one for my purse, one for daycare, one for home)
3. Stocking up on little juice boxes to help treat lows
4. Upping her prescription for test strips (currently at 7 per day, she’ll need up to at least 12 per day)
5. More ketone strips (Insulin with meals means her body is doing less of the work herself, putting her at higher risk for ketones and fast highs)
6. Training Day Care

Ick. Training Day Care. I barely feel comfortable managing her blood sugars, much less teaching someone else how to managethem. This is a whole new spiel, and although it hasn’t begun, it is closer than it has ever been before. For the first time, the hard truth of my daughter’s diabetes seems real. Lantus only, six blood sugar tests per day, and eating whatever without care may be something that is a part of the past one day soon. The real push and shove and “reality” of type 1 diabetes in my peanut is so close I can taste it. Ick.

Gracie’s endo outlined a plan to help prepare Gracie’s daycare for the rigors of mealtime insulin. The first is limiting her carbs to no more than 45 grams per snack or meal. The next is rigidly checking sugars before and after each meal. The carb limit should help prolong the amount of time that she has before she needs to begin mealtime insulin. That means before she starts insulin they will need to learn to:
1. Carb count
2. Carb count what the panut has actually eaten
3. Only offer up to 45 grams of carbohydrate per meal/snack
4. Have “alternative” no carb/low carb snackies to fill her up if she reaches that carb limit and is still hungry.
5. Have a “sugar free” juice alternative, or this little girl will have only juice for lunch and snack fairly easily.

I’ve scheduled in a training session for next Monday at 6:30am with her daycare, assuming that her blood sugars cooperate until that time. Gracie’s diabetes progression has been pretty slow (diagnosed in November 2006, so 8 months of basal insulin therapy only thus far) so I’m hoping that she doesn’t start running crazy high in the next week so I can get together everything I need by next Monday.

I’m not looking forward to this. And I can say, I’m most certainly NOT wearing my brave-heart today (wipes away tears). But we can do this.

I can feel a little crushed inside. And I can feel like my daughter is being diagnosed with diabetes all over again. My heart and thoughts can sink a little lower in this pressing grief. And that is okay. Because even though it seems weird to say that I am grieving the slow death of a pancreas, that pancreas is rooted pretty deeply in an incredibly beautiful and important peanut. And she is only four. I can feel struck down, and I can feel betrayed, and I can feel sad, so very sad.

And in the end, I’ll get up and do what we need to do. Because really, what other options do I have?


Minnesota Nice said...

Sarah, I am so very sorry. Tonight the pink candle will be lit for you guys.

Scott K. Johnson said...

Thinking of you guys Sarah.

Have you ever talked with your mom about your diagnosis? How old were you, and how did she handle it?

Major Bedhead said...

If you want any advice for the day care, feel free to shoot me an email. O was on NPH and Regular while she was at daycare, so she was on a pretty strict diet plan.

It's ok to grieve. Every time O hits another diabetes "milestone," I die a little inside. You wonder how much the heart can take - things chip away and chip away until you almost wish you couldn't feel anything any more.

Amberthyme said...

Even brave-hearts take a vacation. I'm thinking of you & peanut & Sandis. If only . . . there are so many "if only's". I wish I could help. If I can do anything let me know.

Anonymous said...

It seems harder to slowly lose the function of the pancreas -- most people do not have all that time to worry -- and then you have to adjust all over again. It's like getting the news of the diagnosis twice, plus spending all that time "waiting for the hatchet to fall." You don't have to worry about the sugar free juice packs, though, that's the least of it. Minute Maid makes 2 gram juice packs, as well as juice in the dairy section, lemonaide, fruit punch and berry punch, same deal, 2 grams for 8 ounces. You probably know all the free food from your own childhood: sugar free jello with whipped cream if you want, dill pickles, mozzerella and pepperoni, half cup strawberries, sliced with splenda and whipped cream if you want a 5 gram treat, veggies and 0 carb
Ranch dip, hotdogs, no bun, hamburger on lettuce, 1 gram catsup, sunflower seeds, cheeses. If you can count carbs exactly, you can use multiple daily injections, with Lantus being the basal, and Novolog the bolus insulin. She actually could eat what she wanted on that regime. However, I have found best results with three meals, one snack, evenly spaced, no eating late at night.

Carey said...

You WILL do what you need to do and she will be OK.

Take care. I understand your sorrow.

Anonymous said...

A little over a year ago, my son's school broke my heart more than his diagnosis ever did; and I recently re-visited that experience (and still cried).

See stories like these is one of the things that pisses me off about people's reactions to autism. And yet... When you're living it you just do what you've got to do.

Christine said...