Learning from my Nightmare

If you read about The Scariest Night of my Life then you know what nightmare I'm talking about.

I don't tell you about it to scare you. Not at all. Just the opposite, in fact.

I hope than in reading, we all might learn something. I believe that we can learn from our successes and well as from our mistakes.  And we might learn something that just might save a life.

 Please don't misconstrue this for medical advice. It's not. I'm not a doctor. I just play one in real life! This is just me sharing some stuff I learned and what I'd do differently if I had to do it all over again.  (Which I hope I NEVER EVER do!)

NUMBER ONE THING: The Glucagon

Of course, hindsight is 20/20.

However, I won't mess around with icing again. As soon as we see that she is not "there" and she's not able to drink- it's gluc time!

The first dose I gave was a rescue dose. Because I really didn't think she'd seize. She's been really low before with NO symptoms... I didn't expect it. It was already filled so I gave it to her. I'm ok with that.

Once she had the bigger seizure, I should have given her a larger dose of the glucagon with the glucagon needle. I'm really glad I had the other needle since I bent the one with the glucagon kit. So.... It worked out. And I'll always rubber band one to the kit. Just in case.

I shouldn't have been afraid to use the glucagon. We are so scared of it, I think, as a whole. No One wants to use it. But it's not the glucagon we should fear. It's the REASON we need it! And glucagon is not going to hurt them. They might puke... But that's not so bad in the scheme of things!!

I should have done it in the leg. I should have just gone through the clothing. All I saw was open arm and I went for it... But it needs muscle.

This might be the MOST IMPORTANT one... I should have practiced! I have TWO expired glucs sitting on the kitchen counter. Just waiting to be practiced with. PRACTICE!!!! At least review what to do from time to time. Or if you do not have expired ones, ask to practice at the endo. They can request those testing kits. Your school nurse can, too! It's a really good idea...

I am SO GLAD that we have multiple glucagon kits. I highly recommend carrying one around with you and having one in your child's room. Same goes for juice!! I'm not sure why they are so hard to get from insurance... When I was at the CWD conference in March, one of the presenters was taking about this and said (and I quote) "tell them that you used the glucagon and need another. It's not like the glucagon police will show up at your door looking to make sure". Now... I don't know how you feel about that method of getting additional supplies. That's up to you! But... I guess that would be one way to go about it.

We made simple directions to put into the glucagon case or attach to the top. I'll post it as a document on my school stuff tab.

The Pump:

If I ever see another pump message like that, I'm taking off the pump for good. Not that I think it would have helped. By the second time we got the alarm, the damage was done. Plus, I was getting her ready to change the site anyway... Still....

Make sure you have replacements for your battery cap AND the pump cap.  We only had the battery cap replacements.  J had ordered pump cap replacements to be over nighted to us shortly before this all went down. 


The ER:

Keep in mind that you deal with Diabetes every day.  No one knows the patient better than you!

Make  your wishes well known.  I'm sure the ER doc was well trained.  However, it took him and the nurses what felt like a long time to decide what to do.  I had to repeat over and over... YES, it was a seizure but it was due to low blood sugar.  YES, I am SURE that the two were related.  I knew she needed the glucose drip.  She was still dropping.  And it took them seemingly forever to do it.  I should have forced the issue and hurried them up.  I'm sure he called downtown to the endo on call to ask what to do.  I could have told him the same thing.  Faster.

Make sure you have your supplies with you.  They kept testing her and she was a good 30-50 points higher than what our meter AND the Dexcom were saying.  We kept testing her on our own until we were confident she was safe.

I also took juice in the ambulance.  She needed it.  They had none.

And to answer a few questions...

I did not call 911 on the cell.  I used the land line.  That's just how we dial.  It usually turns off if you only push the buttons and not send.  Maybe it's different for 911.  I don't know...

No - we are not sleeping!  J and I are taking turns sleeping!!  We are checking a lot more often.  She's had some weird things going on bg wise...  So we are not comfortable.  I'm sure it will get better.  But for now - she's sleeping by my side!

Am I happy with Animas?  Not really.  They told our RN there were no recalls.  This was not true.  They did not want to give us a new pump.  They did not want to replace the cartridges.  They did not want to check them out... just in case.  I don't like that.  Our endo told us not to use those cartridges.  J had to tell them we'd be switching companies before they would agree.  This does not make me a happy customer. 

Is she back on the pump?  Yes.  I'll address this more later. 

That's all I can think of right now!

Thank you all for the kind comments and prayers over the past week. We truly appreciate it. I am trying to respond to everyone but it's proving difficult!  Please know that I am truly grateful for your kindness!

I must say, however, that I am not a superhero. I don't wear a cape or have super powers (although that would be soooo cool).

 I did the best I could. I'm not perfect.  I'm human and I make mistakes.  I did what I could remember in my panicked state.  I did what I was trained to do.

I'm not any more brave or strong or awesome than all of YOU. I didn't do anything that any one of YOU would not have done. So please don't make me out to be anything I'm not!   While I truly appreciate the kindness and how you've lifted us up... it makes me a little uncomfortable!

I'm a Mom.  I love my kid.  She's alive and well.  And that is best thing in the world!