Thursday, February 5, 2009

A1c and Progress report

This Tuesday was Emma's A1 c appointment.  We meet with her Endocrinologist every 2-3 months.  Every time I leave this appointment I feel just as overwhemed as the day she was diagnosed.  They run a test called an A1c, it represents the average glucose in her blood over a 3-4 month period.  It provides a lot of information to help manage her diabetes better.  A1c goals for kids Emma's age(0-6 years)  should be below 8.5%.  This time she rang in at a 9.1, I was glad that it had come down from the previous appointment(she was at 10.0).  With that being said, it really isn't a good number.  I don't like that her result lands on the scale where you see Dangerous.  I would love to see it in the Excellent control range and would even take Fair control.  We have only received a fair once or twice and never ever see excellent control.  

This is an appointment that I dread.  Besides the A1c, we also meet with the Nurse/Diabetes educator followed by the Dr.  They have me fill out paperwork that provides current dosing information.  They download her pump and glucometer into a computer system that prints out a summary of her imformation. It adds that info into charts and then we can use those averages and readings to look for problematic times or meals that might need tweaking in her insulin doses.  There is no way a teenager could fake taking care of their Diabetes, it all gets recorded.  So if they weren't doing anything, the downloads would be empty.  I kind of feel bad that these kids are living with that kind of pressure.  

They ask me all sorts of questions and while I attempt to answer them, Emma is either emptying all the cabinets out or hitting and screaming.  Saying it is stressful is a huge understatement.  It is always frustrating for me because they really don't know why we can't get better control.  I always feel like it is my fault, maybe I'm not carb counting accurately or maybe I am getting too lenient.  Deep down inside I know I am doing at least enough.  I also have good reminders, like on Monday, her blood sugars ran in the 100's all day(I did nothing different than any other day).  They can tell her blood sugar is being checked enough and that we are giving her plenty of insulin in a 24 hour period.  Her numbers are just depressing.  Ben, one of the educators, reminded me that I am doing a good job.  Maybe he could tell that I was fighting back tears the entire time(I always am).  Every time we're there he kind of shakes his head when he looks at her charts and numbers because he doesn't know what to do.  We both spent a lot of time looking for patterns.  He explained to me that they will usually show up at the same time of day or on the same day of the week or at the same meal.  Not Emma, there was no distinct pattern.  Her numbers were all over the place.  I mentioned to him that I noticed I was getting better numbers when I put her pump site in her arm(we can use the back of the arms, the top of her fanny, her chuncky thighs or her stomach).  He still wants me to rotate through the site areas in spite of that though.  We both kind of decided that maybe she just wasn't getting enough insulin.  Dr. Donaldson came in at that point and came to the same conclusion.  He ended up switching everything.  He is having us use a new glucometer and a new brand of test strips.  He increased her basal rate, that is the amount of insulin she receives about every 10 minutes.  He increased her bolus amount, the insulin she gets for her high blood sugars.  He increased her carb ratio(meaning she gets more insulin for the carbs she eats) she is at a 1:20 ratio now.  She receives 1 unit of insulin for every 20 grams of carbs that she eats.  I think it is a pretty agressive dose, I have met grown ups with a 1:10 ratio.  Since insulin absorption is the best on the first day of a new pump site, I have to now temporarily lower her doses 20%.  It sounds more difficult than it is, there is a feature I can use on the pump.  I program how long I want it and how much I want it lowered.  One more thing I have to remember in the day, if I don't she could have low blood sugars that first day.  It is interesting the things we have to do to "fine tune" her Diabetes management.  I have seen good blood sugars since the appointment, but I have also had way more lows.  If it doesn't level out, her doses will have to be tweaked again.  

Dr. Donaldson is using a new system to help the parents manage better(at least the ones who are on insulin pumps).  I spent an extra hour on Tuesday getting set up and learning what to do.  I wasn't too thrilled about having to stay longer, but I am excited for a better change.  Until now, when her blood sugars were giving me problems, I have had to chart everything for a day or so and fax it into them.  The nurses or the Dr. would review it and then fax the changes back.  It has presented problems for me because it is not a fast process and like I have time to do that on top of everything else.  Now when I need their advice, I will use something kind of like a usb port to download the pump into the program.  I can call the office and they will have all the info they will need broken down into log books and summaries.  So much less work for me(two weeks worth downloads in like a minute) and I think this will be a valuable tool in them helping us.  Doesn't this information make your head hurt?

I received Emma's quarterly report for her Occupational Therapy goals yesterday.  All 5 are brand new goals as of this year.  They are 1. will imitate and progress to copy from a visual reference the pre-writing lines and shapes while using a tripod grasp on writing utensils.  2. Will find 10 objects hidden in a soft resistive theraputty in under 5 minutes independently.  3.  Will match the letters of her first name and then trace her name with correct letter formation.  4. Will use adaptive scissors to cut a theraputty snake into 10 pieces, snip a straw into 10 pieces, snip a strip of 1" wide paper into 10 pieces, and progress to cut along a 6" line.  5. Will button and un-button on a dressing vest in under 4 minutes independently.  The performance measurements are (G)=good 75% or more accuracy.  (F+)=50-75% accuracy.  (F)=fair 50% accuracy.  (P+)=25-50% accuracy.  (P)=poor=25% accuracy or below.  For goal #1 Emma received a P+.  2. She received a P+.  3.  she received a P.  4.  she received a P.  5. she received a P.  A few years ago I probably would have spent the night crying knowing that she scored at the very bottom.  But, I have learned to look at her progress with the right perspective.  I can't compare it to 'normal" kids, that is depressing.  I definately can't focus too much on the actual score.  As long as she progresses I don't care where her marks come in at. I am pleased with the progress I am seeing in her.   

3 comments:

Shelley Eggett said...

Wow, what a rollercoaster. I remember my little brothers A1C's always being really high. My Dad bribed him with a electric scooter to get it below an 8. He finally did, but it didn't last long. On his mission was when his A1C's were at awesome levels. He must have been being blesses as well as my parents. Anyways, I'm so sorry for all your pain Lisa. You are A-M-A-Z-I-N-G at being her Mom and caring for her. I hope you are able to find what works for little Emma. I pray for her every night.

ady said...

Stressfull; no kidding! That's definitely a lot to wrap your head around. That new system sounds like it'll be really helpful, though. I hear you about the therapy goals... I just hate doing them b/c of course I want Kylee to do EVERYTHING, LOL! I honestly am a big brat when it comes to that; I say "write whatever you want" or "yeah, sure, whatever"... Probably not the best attitude, huh? :P But you seem to have a good perspective on it - that you are focusing on the progress and not the paperwork...

Krainich Family said...

What a beautiful daughter you have. Thank you for sharing her life with us.