THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Friday, March 2, 2012

"Hi. This is Wendy. I'm the nurse returning your call."

"How can I help you?"

"Well, my 2 year old daughter drank at least 20 sippies today.  All my family keeps saying it doesn't seem right."

"Oh.  Has she been urinating a lot too?"

"YES!  Like, I JUST changed her diaper a few minutes ago before you called, and can tell I need to change it again already.  I guess she really has to go bad with all these sippies she's been drinking."

"I see.  So, how long has this been going on?"

"Oh, geez.  It's been a few weeks.  But she got sick last week, and it's gotten a lot worse since then.  I thought maybe it was a side effect of the medicine they gave her.  Anyway, my grandmother watched her the other day and said it's not normal.  She told me I'd better call you, so I counted how many sippies she took today.  I'm just calling to see if that's normal so I can tell my grandma that I called."

Gotta love those Grandmas.
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9 comments:

  1. Oh yes! Gotta love those grandma's!

    Lenny's Grandma (my MIL) is actually the one that told us that he has the classic signs of diabetes, and to get him seen ASAP! We all knew something wasn't quite right for a few weeks before that, but wasn't sure what it was. I spent atleast a week and a half trying to do google searches on his symptoms, to hopefully figure out what could be causing them, then one day, my MIL tells us she thinks its diabetes. After reading more about it, I agreed and immediately scheduled a "sick child" appointment with his pedi. MIL went with us to the pedi appointment, and sure enough, he was diagnosed! In fact, they told us had we waited even one more week, he would have been comatose with DKA! His diagnosis A1C was 12.5, blood sugar was 593, and Children's Hospital wanted our pedi to life flight him in, but our pedi said that since he was still consious and aware of his surroundings, there was really no need. We just had to rush to get him to Children's as fast as we could (which is a good 2 hr drive from where we live... took us a little longer than that due to getting a little lost in downtown Pittsburgh LOL!)

    Yep... gotta love them grandma's!

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  2. Thank God for Grandmas! You are a rock star for doing the job you do, Wendy. I can only imagine how much those phone calls take out of you! You're amazing!

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  3. I am sure your heart drops whenever you hear those symptoms. Are you able to tell her it is most likely diabetes or do you just have to tell her to go in to the doctor? Just wondering how much of your personal experience you can relay.

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  4. Oh, that just breaks my heart to hear her list all those symptoms. I'm curious what all you can say as well, and if you know what happened after.

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  5. As a rule, I don't share much. I can usually gauge within the first 2 minutes of the call if it's someone who can "handle" my immediate thoughts. I may say something like "I'm very familiar with the symptoms you're describing, because my daughter experienced the same thing a few years ago." I may or not add "She was diagnosed with type 1 diabetes." Or I may not say anything at all...just a simple statement that the symptoms they're describing are concerning -- mainly to validate the fact that they have, indeed, noticed something out of the ordinary, and should continue to follow their instincts that something is wrong.

    I always send them to the ER. My daughter went downhill pretty fast in that previous 24 hour period. If it IS a new T1 dx, you really never know where they are on the DKA spectrum. I operate by the rule that it's better to be safe than sorry. If it's NOT T1, then it's something...a UTI, perhaps? Even still, such a dx would need medical attention and can get significantly worse in the 12 - 18 hours it may take before the office can get them in the next day.

    I don't ever find out what happens. I can contact my supervisor with the name and ask them to follow up with the office, but there's no guarantee the office will get back to us. I usually have a screen full of calls that are waiting, so I have finish up that call and move on.

    But my heart ALWAYS skips a beat.

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  6. I will always remember the on-call Nurse that answered "my call"...she was my angel after almost two weeks of getting the run around from the pediatrician's office nurse and she was so wonderful that she even...probably against the rules...called me back later that day to see how me and our sugar babie were doing. What a life changing call it was for all of us. Those families are so forunate that you answer their call Wendy!

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  7. Yes, those grandmas are quite helpful...Alex spent the night with grandma the weekend before she was in the hospital and grandma informed me too that something wasn't normal about her water drinking. I remember coming home Monday night with her and going back and forth over calling the on call nurse to see if I was crazy for considering an ER trip. I am betting if I had called, you would have been that on call nurse and I would have indeed been in the ER. As it was I just waited until the morning and took her into the pediatrician. I'm sure glad nothing more serious happened that night because I didn't call.

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  8. I sure hope everything is ok. I don't think I would sleep with a job like that, I would sit up worried all night wondering if they are all right or not. Wendy, you are awesome! :)

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  9. You are tough! And lucky for them you were on call. :) Our dx experience was similar to yours, and the (then) pediatrician didn't put the symptoms together - we did. Must be tough to take those calls, but the people who get you on the line are so lucky.

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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.