Monday, July 20, 2009

Stomach Punched

This is a hard blog to write – we went for Nikki’s diabetes check up today and it was the worst one we’ve EVER had. Her A1C’s are and have been consistently in the 7 range since the first check up after her diagnosis (they want a child of Nikki’s age to be under 8), today they were at 10. My heart stopped. We have suspected for the last few weeks that her new (relatively) pump is the root cause of so many astronomically high numbers. The diabetes team at Children’s shares my suspicions: we have made adjustments and are doing a couple other monitoring steps over the next week to confirm that. Once we are sure that the pump is the problem we will start the process of changing back to Mini Med. We are also going to file paperwork to begin her on a CGM device (continuous glucose monitoring).

What we are seeing with this Deltec pump is that it begins to deliver insulin and then just stops – no alarms, no reason; it just acts as if a bolus command was never entered. What we are afraid of now is that it sometimes says it has completed an insulin bolus delivery that it did not actually deliver – meaning she has not actually received any insulin at all. Again, this is just a suspicion at this point. Other things - a big one is puberty, she'll turn 12 in February - are most likely contributing to some of this as well.

All of this is well and good but the bottom line is that my child’s life is being compromised and that is not acceptable. I haven’t felt much like talking about it today, don’t feel a whole lot different tonight – I just can’t get my mind around that number and the feeling that I should have done something more, sooner. It does feel like I've been punched right smack in the middle of my stomach, a whole bunch of times.

Last blood sugar reading today was 103.

All for now,

4 comments:

Anonymous said...

First, I just want to say I love you and I'm sorry! So often I just wish I knew the right words or the right things to do, but it just doesn't work that way. All I can do is cry and hurt with you...I promise my heart is with you both. Second, absolutly NONE of this is your fault!!!! You are an amazing mother and Nikki is very blessed to have you! My prayers and my families prayers are with Nikki and you! Love ya!!!

Melis

Wendy said...

Addy pumped with Cozmo for 2 1/2 years and nothing like that ever happened.

Have you contacted the company? They'd probably send you a new one ASAP.

No sense in using a broken pump while you wait for the new one!!!!!

Anyway, bugger about the 10. Don't worry...you're not alone! Addy's been in the 7's for 2 years with Cozmo -- I'm sure she'll be in the 8's, if not higher this time around...we just switched to the Ping. We've had a heck of a summer!

Paula Lee said...

Hey baby. All good advice up above. I tried to call for over an hour and just got busy signal. So I'm writting on here. Don't go into a tail spin about this. Don't get mad at me about saying that. Things have been pretty smooth, or as smooth as they get with a child with a major illness, for you all. You know what I went through with Brittany from the get go. I know the feeling of feeling like you should have done something...any thing more. Of feeling like you were hit in the stomach with a giant fist. Of the fear that makes your heart contract & feel like the life is being squeezed out of it. All that does't matter. You are doing it all for the first time, day by day, week by week, year by year. With all our good intentions, we still don't walk in your foot prints...we have walked our own paths & can only offer to share with you the hope that this too shall pass. Hang in there baby, I love you. Momma

Joanne said...

Sorry to hear that... I hate those dreaded A1C reports. We have one coming up soon and I'm not looking forward to it. I hope the problem gets figured out soon... and don't beat yourself up. Hugs!