Round 4

Posted by Alicia | Posted in Ainsley, Diabetes, The Pump | Posted on 08-07-2010

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Today we have our 4th post-diagnostic appointment with our diabetes care team. Our team includes:

1) Child Life Specialist – she provides ideas to help the kids cope and shares information about cool non-profit support programs.

2) Social Worker – her job seems to be to make sure that Greg and I are coping.

3) Dietitian - she helps determine how many carbs Ainsley should be eating, her carb-to-insulin ratio, and lectures me on how my 2 year old should enjoy eating raw broccoli and bell peppers.

4) Case Manager/Certified Diabetes Educator (CDE) – this is our point person for daily questions and issues like dose changing, Sick Days, etc.

5) Pediatric Endocrinologist – he oversees Ainsley’s care and has the final say on her treatments.

Each visit is about 1.5-2 hours long. Whew.  After today, we will go from weekly appointments to monthly appointments. Then we will go to quarterly appointments and that will be permanent.

Today I expect to be talking about Ainsley’s recent illness and how we weathered that, her weight gain, how the new carb-to-insulin ratio is working out (I’ve made some changes to it), and – the biggie – the pump.

Since this is our last visit for a month, we are going to make a big push for the pump today. I know some of you have questioned why we are “rushing” into the pump. Let me give you an example.

Yesterday after dropping Ellory off at preschool, I came home and prepped Ainsley’s lunch, did her BG, and calculated and drew her dose. I thought that she would like the lunch (lasagna) and would eat most of it. I dosed her accordingly. She ate a few bites and then stopped. Typical for a 2 year old. I worked on her for a while but she wasn’t going to keep eating, so I backed the insulin with some Pediasure. She went off to nap.

Upon waking from nap, she came straight downstairs to her spot at the kitchen table and sobbed heartbrokenly upon finding that her lunch plate had been removed. She was hungry and wanted to finish eating her yummy lunch that she was now ready for. She sobbed harder when I wouldn’t give it back to her. I couldn’t. It was awful.

The reason I couldn’t give it back was this: I had dosed her and backed her dose. If I were to give her more carbs, I would have to give more insulin. But we were still within 1.5 hours of the last dose. Novolog stays active in the body for 3+ hours. If I were to add more insulin, it could go too far and she could plummet. I would be speculating on how much insulin to give her to cover the rest of the meal. So instead I told her I was sorry and gave her a stack of cucumber slices. She was so hungry she actually ate them.

This is the type of scenario the pump is for. With a pump, I could have given us a buffer zone by only giving her half a dose before she ate, in case she didn’t eat it all. Then I could have just given her the rest of her lunch after nap and bolused accordingly. “Bolused” is a fancy term for dosing that applies to the pump. It is a more appropriate word because it implies more precise dosing. Example: a pump would have told me how much insulin was still on board from pre-lunch and advised me accordingly. I could have then made a determination on how to dose for the second half of lunch which may not have been equal to the other “half” of her dose.

A pump is a more sophisticated and intelligent tool for managing diabetes, plain and simple. It is not easier to use, and we are very aware of this. It requires a reasonably sophisticated and intelligent mind to operate it well.  I think this is the primary reason our diabetes care team is reluctant to give it to us. Clearly, they don’t know us very well yet.

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Diabetes Management Tools

Posted by Alicia | Posted in Ainsley, Diabetes | Posted on 06-07-2010

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Our crucial tools right now are these:

They include a OneTouch Ultra2 blood glucose meter, testing strips (shockingly expensive), finger-poker, finger-poking needles, BG 33 syringes in .5 unit increments, Novolog (fast-acting insulin), Lantus (slow-acting insulin), Ketostix, our EatSmart Nutrition scale, and DiabetesPilot, an iPhone app for logging virtually everything that happens during our day. Oh, and our glucagon emergency pen, glucose tabs, and PediaSure. These are all of the things that we now need to keep Ainsley alive and healthy. This does not include her new dietary requirements. Here’s  a breakdown:

OneTouch BG Meter: we use this to check her blood sugars throughout the day and night. We poke her finger with the poker. We start with the thumb before breakfast and work our way across the fingers and then the toes as needed. We poke to the sides of the finger rather than the pads to minimize pain.  We insert a test strip in the meter, get a nice fat drop of blood on it, and in 5 seconds it tells us her real-time blood glucose.

Novolog: this is the insulin we administer with food. We use a carb-to-insulin ratio to determine how much to give her. Right now she stands at about 25:1, meaning 25 carbs to 1 units of insulin.

Lantus: this is her long-acting insulin. We give this at night. It acts over 24 hours, reducing her overall BG and acting as a buffer to “soak up” variables, of which there are many. We recently reduced her Lantus dose because she was waking up “low” every morning in the 80s. Now her daytime sugars are a mess. Back to the drawing board.

Ketostix: we use these to test her urine for ketones whenever she gets sick. We test every 3 hours, along with blood sugar. This lets us know if she is slipping into Diabetic Ketoacidosis (DKA), aka BIG BIG TROUBLE.

Food scale: we just recently got this and it is a savior. It is giving us much more accuracy. Instead of conjecturing how large a “large” banana is, I can just weigh it and know for sure how many carbs are in it. We start by weighing her plate and then each food, counting carbs as we go. Then we know how much insulin to give. It’s important to be slow, careful, and methodical.

DiabetesPilot: this is just one of many logging tools. It’s handy because my phone is always with me. I make entries throughout the day for all of her food, BG results, insulin, notes about details, everything. It tracks her averages, yields reports, and estimates her A1C – that all-important number that tells us how well we are controlling her sugars overall. Right now, at 8.2 that number is not great, but it’s a lot better than the 11 when she was diagnosed.

Glucagon:  we use this if she drops dangerously low (i.e. she passes out and is unresponsive). The syringe contains powdered glucagon (a hormone equivalent to major sugar). You mix it with the liquid in the vial, shake it up, and stab her in the hip. It will bring her back from any super low and may make her super high, but won’t kill her. We keep one of these everywhere.

Glucose tabs: one way to give her a controlled dose of sugar when she’s too low. I keep a bottle in my purse.

Pediasure: this is what we give her when she refuses to eat. Because we have to dose her before she eats, we must then make sure that we back that insulin with enough carbs or it’s going to put her blood glucose through the floor. Pediasure tastes like chocolate milk to make sure the kiddos drink it when they need to, and the doubled edge of that sword is that . . . it tastes like chocolate milk.  She has now figured out that she can refuse to eat and get one. Don’t be surprised if I’m bald when next you see me.

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