Friday, November 11, 2011

Bedtime Blues

Last night we had a weak signal and Lost sensor error with Princess's CGM.  It isn't uncommon for us to receive this alarm when it's time to change the sensor.  It had been six days and I knew we needed to change it.  

The thing was that Princess was just lying on the couch and didn't look good.  My first thought went to diabetes. (of course)  Is she low?  Is she getting sick?  Is her blood sugar really high?  I got her meter out to check her blood sugar and she was 132. Not bad but with out the sensor I didn't know if she looked that way because her blood sugar was dropping fast or if she was just tired.  She wasn't telling me anything either.  That didn't make me feel any better that she wouldn't tell me.  

I thought about trying to start the CGM back up and see if we could get another night from it so I didn't have to change it until the morning.  I didn't want to but I tried, with no success.  I decided that it would be better if I just put a new sensor in. Better to go just a couple hours without the CGM rather then the entire night, especially considering how she was acting. 

While we were having "issues" with Princess's CGM Lovebug was low.  Dexie was telling me she was 70 with arrow straight down.  Normally I wouldn't worry about this, we would treat it and wait for it to go back up.  Considering it was right before bed, I was a little worried. (and wondering if this was what the whole night was going to look like)  Just about 15 minutes later when I was getting ready to check her again, Dexie beeped.  Dexie was saying she was 58 with arrow straight down still.  What in the world?  We re-checked her and she was 102.  She had gone up from the 70 she was before but Dexie just hadn't "caught" up yet.  We calibrated Dexie and sent Lovebug up to bed, knowing we would be up to check on her in a few when Princess was ready for bed.  

After we got the girls tucked into bed, I almost got teary eyed.  I admit, I was worried. Worried sick for both of them. I had made my hubby check Lovebug a few more times then I normally would because of it too.  Normally I am not so "paranoid" and don't worry quite so much, but my thoughts went back to what I had seen earlier that morning. Another parent living one of my worst nightmares.  Another young life lost to Diabetes.  

Daniella Meads-Barlow is her name.  She had Type 1 Diabetes and passed away in her sleep the morning of November 8th.  This is the reality of the disease my girls (heck, our whole family) live with.  I put my girls to bed each night knowing that there is a chance they may not wake up in the morning. 

Theses kids don't die because their parents neglected their diabetes or because they had "bad control".  It is just Type 1.  It's what it does. It is unpredictable.  It changes from one moment to the next, from one day to the next.  The JDRF just released a startling statistic. 1 in 20 (kids and adults) will die from low blood sugar. This is what happened to Daniella. 

This makes me cry. It makes it hard for me to sleep at night. It makes me more determined then ever to fight for a cure and to spread awareness of this disease.  But last night, it just made me want to hug my girls and hold them even closer.  


The Mum said...

Heather, It is 1:20am here in Sydney, Australia. This is the 2nd night in a row that I just can't sleep. The loss of Danii Meads-Barlow has hit the T1D community here in Sydney very hard. I'm also a double T1 Mum - with a 11yo daughter and 14yo son both diagnosed in 2010. Dexcom is not available in Australia. The Medtronic CGM is available, but is not covered by any health insurance and the purchase and running costs are out of reach of most families.

Danii's parents are very heavily involved with the Australian Diabetes Council and have set up the "Danii Meads-Barlow Memorial Fund - below is information about that fund as posted by Danni's mother, Donna, on Danii's memorial Facebook page.

Hug Princess and Lovebug for me - I am off to check on my two once again - Issie had 5 hypos today at school - after 2 hypos overnight last night.

Sleep is a distant memory.

Annamarie x x x x x

"Donna Meads-Barlow
Donna, Brian Meads-Barlow and their family extend their gratitude for the enormous support and condolences they are receiving from friends, family and the community.

They have expressed a desire for this support to be channeled towards a memorial fund established in Daniella’s name. The funds will be used directly in the development of an appropriate alarm device for the pump used by Diabetics approaching Hypo-glycaemia. The alarm will send an urgent alert, not only should the pump malfunction, but in its design, will alert of a pending emergency of the sufferer of this dreadful disease.

Brian and Donna will continue to lobby in Daniella’s name this device onto the PBS in Australia to prevent this occurrence taking another life.

In lieu of sending flowers please help them take up this cause by donating to;

"Danii Meads-Barlow Memorial Fund"

By direct deposit: Australian Diabetes Council - Danii Meads-Barlow Memorial Fund
BSB: 062284 ACCOUNT: 10331874

Cheques F/- 'Australian Diabetes Council - Danii Meads-Barlow Memorial Fund'
GPO Box 9824
Sydney NSW 2001

Your contributions are greatly needed and shall assist in preventing another tragedy such as that which took our beautiful Daniella.

Rachael said...

this fear takes a hold of me every night holding tight till morning when I can breath..

God Bless the Meads-Barlow family..

Misty said...

I try not to focus on the fear, but it doesn't make it go away. Praying for the Meads-Barlow family and hugging my girl a little tighter tonight.


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