Wednesday, May 4, 2011

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!


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29 comments:

  1. Thanks for sharing what you've learned Hallie! Also, wanted to let you know how helpful your vlog about putting Sweet's site in while she sleeps has been to one of my local friends. Her 5 year old daughter just started pumping with MM and she has watched the vlog twice and it has been so helpful to her!

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  2. So I've been putting off reading about you're horrible night, quite honestly, because it scares me too!! Then I figured knowledge is power....THANK YOU for sharing! Praying for you and Sweets, and hoping that I never have your nightmare..(and praying that you don't ever have it again too!!!)

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  3. I adore you. Truly. Brave.You and Sweets!!

    I agree. We have 4 glucagons. You never know.

    Wow. Shame on you Animas!! That makes me sad.

    Thank you for sharing. For educating so many. Being an advocate for your daaughter and my son.


    muahH!

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  4. Thanks for sharing what you've learned!
    We were taught a little rhyme in the hospital "wet to dry and in the thigh" it's stuck with me!
    I'm so sorry you guys had to go through it all. It really hit me hard with the girls both being so close in age and all.
    Any who...I'm so thankful for sweet peas life, glad she made it through ok! (((HUGS!!!)))

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  5. Hallie,

    I'm proud of you. Not only did you learn from you experience what you could have done differently (notice I didn't say "mistakes"); you are sharing that knowledge with all of us and all of those that care for us.

    You done good, girl!
    Scott

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  6. New pump & battery caps ordered!

    I am bummed that Animas has handled this poorly for you. There was obviously SOMETHING wrong with the pump or pump parts...and they need to realize that we are entrusting our children's lives with their product.

    I do just want to thank you SO SO much for sharing all of this. It helps so much to read all of this and mentally prepare...in the event we need this info. ((Hugs)) and thank you for being so brave in sharing!

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  7. Thanks for sharing Hallie! I can see why all the uplifting would make you feel uncomfortable...but everyone is just hoping you dont beat yourselves up about all the should have's and could have's :)

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  8. I had a hard time reading your other post, but I'm so glad you DID write about it and share your experience with all of us. So glad everything worked out OK...I carry the gluc with me everywhere, but I'm embarrassed to admit I have no idea how to use it! I keep meaning to go over using it with my roommates and boyfriend, but I keep putting it off...I won't any longer though!

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  9. Thanks so much for sharing what you've learned through your experiences!

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  10. We are all learning from your experience; thank you so much for sharing it. I'm sure it's still extremely raw and the healing will take a while but know that you are continually lifted up!
    I love the 'wet to dry, in the thigh' rhyme...so catchy and easy to remember!! Thanks for sharing that, AJsMommy.
    We only have one glucagon...well, two, but one is at school. I will be looking into getting more, that's for sure!

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  11. I suspect this post and your previous post will help a lot of people. Thanks for sharing!

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  12. You say it so clearly! When we first came home from diagnosis, no one even thought to tell us about seizures. What a horrible way for us to learn how to treat even the smaller initial seizure a couple days out of the hospitalization, but as a panicked mom on the phone to them. We learned quickly what we needed to do and are grateful because it's happened multiple times and it never gets less scary.
    Season changes always bring extra blood sugar craziness for us, lots of lows, and we keep reducing insulin all around. Our dr's actually prescribe 2 glucagons on one prescription in case we need more than one for the initial time or to have one in her bag and one in her room. I would highly recommend the two kits as well, and check the dates on them often. I think sharing your experience helps others who haven't dealt with this, and to remind those of us who have, how important it is to prepare for the worst and hope for the best! So happy that you are getting some rest, even if it is in shifts and that your little girl is doing better.

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  13. I totally agree on the Glucs. I carry one with us all the time. You never know when you will need a mini-dose.

    Thank you for sharing your experience and what you learned from it. You are helping so many by being so open.

    Like Scott said, "you done good Girl!"

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  14. Thanks for sharing this Hallie. There are so many ppl that want to know and learn. Who better to learn from than eachother.

    HUGS!!!

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  15. Your post helped me understand what other's are going through while I am seizing. Being a T1 for over 30 years, I knew it was traumatic, but I did'nt really have any idea until I read your post.
    Just remeber that unfortunately it is going to happen again, so you have learned how to handle the future seizures better! Lesson learned.
    Thank you for all of your insight.

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  16. I'm going to buy you a cape, Hallie. Because you are a superhero and so deserve one.

    Thank you for sharing your nightmare story. It makes me scary crazy, sad, and mad all at the same time.

    We have frosting/icing tubes in our home and use them in most Low situations (it also helps they're wicked cheap!). That usually works, but on occasion it doesn't and the glucagon is needed. But I had one on had for YEARS without ever using, and so it's a good idea to have at least one or two up to date just in case.

    One thing I've come to expect: pumps and technology will fail. No matter what.

    But Animas' response on this... I'm now clenched-fist mad. I think it's time to find a number and call them up, and scold them myself. Not that I have one. But if I ever thought about switching from MM to them, FORGET THAT. Not when that is the kind of response you get after a horribly scary situation. These people are about the face the D-Mob...

    Anyhow, I'm sorry you all had to endure this. But as Scott and others have said: You done good girl. A big hug to Sweets.

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  17. I haven't stopped thinking about you and Sweetpea, we had a scare last Monday night, a low while asleep and I could not get Jack to wake up and drink. Lights on, TV blaring, sitting him straight up, wouldn't open his eyes. Daniel even took him outside. I grabbed the icing (didn't know you needed scissors to open the damn thing) and as soon as it hit his gums he woke up, pissed off, but drank the juice. Of course later, we were 487, so I spent all night chasing numbers. Then I read your post. It occurred to me how either of our stories could have played out the opposite way, why does it happen? IDK. Damn diabetes doesn't fight fair. I just wanted you to know that I have been thinking about you guys, praying for you, and I am so thankful that you are posting this info. It may very well mean the difference between lighting a blue candle and not. Preach on girl! keep fighting for your gorgeous sweetpea! Hugs to you all, jaclyn

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  18. It's been five plus years and never a seizure even though she has been scarey low at times. Thanks for posting; we have become very complacent as far as using Glucagon is concerned. It's in the upstairs and downstairs fridge and I have practiced. The "Wet to Dry in the Thigh" rhyme, I just saw on one of the blogs; and it is very useful. We do tape an insulin syringe to the glucs (and I will tape 2). But we do not carry them with us. Big mistake, I can see. At this point, I don't expect to use it... complacency. If using Glucagon, I know I would use the whole dose.... that's IF I had the Glucagon on me! So, again, thanks. Here's what you did right. You had ditched the Glucagon, yes, but you were smart enough to have another one upstairs nearby. When you don't have a backup pump, you are much more apt to forgive a pump error message. After all, we are used to seeing error messages sometimes and starting up the pump again. And it is traumatic to go back to MDI until the replacement pump arrives. Animas..... I was not happy with them either. But the fact they were going to integrate with Dex is such a plus. Yet, the cartridge recalls (which, by the way, explain the ridiculous highs we had on that pump years ago).... I am not sold on the mechanical piston mechanism of the pump. And that fact that Animas did not RUSH to send you a replacement pump and, particularly, investigate and take apart the malfunctioning pump to test it... well, that is not the Animas we knew. We are going to stick with Minimed. And, I would not hesitate to call them or one of the other pump companies to see if you can get a deal and change pumps (if you wish to). If you are not happy and do not feel safe with Animas, I believe one of the pump companies will cut you some type of deal. I am most concerned with the fact that a possibly malfunctioning medical device possibly delivered excess insulin into a CHILD, and the company did not demand the pump back so they could take it apart and look for defects. Again, that does not sound like the Animas I knew. Animas had superior customer service, but I did not think their pump was good at delivering small increments of insulin (we had so many highs which disappeared with Minimed).

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  19. I just came back from my son's endo appointment this morning. I talked over what a seizure looks like and the use of glucagon - because YOU SHARED this! Thank you for this! My son has had lows in the night that I never would have suspected to be a seizure until you wrote. I don't know if they were or not. I just know that now I will be more prepared because you opened up with us! I am grateful for that! Endo told me today, "you can't overdose with glucagon." I have to say that took a lot of fear out of using it for me.

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  20. Thank God absolutely!

    Though I was scared reading the first post, thank you for sharing it. If ever we're in that place with Jessi...I now have something in the back of my mind to help us through it. I can't imagine...

    So thankful things are alright now. I don't think I'd be sleeping for awhile either. But what great parents you guys are, not to mention rescue team!

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  21. Thank you for the tips. I sent your blog to my loved ones and roommate in order for them to be better educated on how to handle me if something were to happen to me. I am sorry once again you had to deal with this, but this is now a lesson we all can learn from. Thank you

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  22. I have learned so many things from your honest posts. I now have juice in the closet upstairs (a tip I learned from you) and last night I got the extra glucogon, rubber banded an extra syringe around it, and put it in the closet with the juice. I would not have thought to have an extra needle handy. Good tip. I had my husband read these posts too and the first thing he said was that you guys did a good job. I agree. I do want to comment on what you said you would do differently next time and it stems from the conversation my husband and I had about your posts. It goes along with many of us being afraid of the glucogon. So many people are also afraid to call 911...not knowing if what is happening is a worthy emergency. I want your readers to know, PLEASE do not be afraid to call 911. My husband is a firefighter and an EMT and you can't imagine the kinds of "emergencies" they get dispatched to...things that are nothing compared to this. I promise that the EMT's and paramedics are happy to come...especially for a child. If you have any concern that you need extra help call and get them on their way because it will take a few minutes. If everything is under control by the time they arrive you can decline being transported...and if that's the case you don't even get charged. Anyway, thanks so much for sharing your story. It makes me feel a little bit mre prepared.

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  23. Your willingness to share what you learned from that horrible experience is what makes you a superhero, Hallie - because it couldn't have been easy to write, but you knew it was the "right" thing to do. It will help more people than you'll ever know.

    You rock.

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  24. You sharing this nightmare and lessons you have learned will save the life of a child one day I feel certin. THANK YOU for sharing. You should ware your cape proudly to your little one you are her superhero! Lots of love

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  25. I'm glad she's ok. I am glad you shared your story too. We are doing a family training tonight on glucagon here with expired kits and I now have 3 new kits available for any emergency. Hugs and lots of Love to all of you!

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  26. After reading your post again, I do want to mention that you have no need to feel guilty over not removing the pump after a NO PRIME NO DELIVERY message. All our Animas pumps were quite prone to deliver this error message and it is very common with the Animas pump. Minimed, too, will give us this error message and it can mean she is sitting on her tubing in a certain way or it is a bad site. Heck, if I sent back Animas every time I got that message, I would have been sending the pumps back once a month. And, Animas would not accept the pump back for just that error message. The fact that a loose cap can deliver all the insulin from the pump into your body, and the fact that Animas is so prone to loose caps that they sent a letter requesting you to change out the cap every six months to a year.... you know, after reading your post, I no longer think this is an acceptable risk and no longer think I would want to keep on top of the cap situation. The stakes are too high. She wore Animas this summer with no issues. Animas has had problems with the FDA in the past, as we found not three months after purchasing their pump. However, Minimed may have as well. But their blase attitude and refusal to immediately take back and examine the pump leads me to conclude that they no longer belong in the business of supplying children with pumps. I hope you run, not walk, to another pump company.

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  27. Hallie,

    I'm sorry it's taken me so long to comment and send hugs. I'm so sorry you guys went through this. I can only imagine the horror.

    I'm equally glad that you are on the other side of it and are sharing your story and giving others information and confidence should they ever experience the same.

    Hugs to you, hubs and sweatpea.

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  28. THANK YOU so much for this post. A seizure is the one thing I have feared the most since my 6-year old daughter's diagnosis almost 3 years ago. Reading your post made me realize that despite our best efforts, it isn't a matter of "if" it will happen, but "when." You helped me to understand how it may all play out, and to face my fears. I feel so much better just knowing what to do and how to best be prepared. I had my husband and mom read your post as well so we could all be reminded of what we need to know and be prepared to do. My heart broke for your beautiful little Sweets, and for you and your husband as well. But here you are on the other side, having made it through the scariest thing, and sharing it with others to help our own little ones. Thank you again - you will be in our thoughts and prayers.

    Also - another Glucagon ordered, syringes rubber banded, juice boxes ready to go on an ambulance ride if needed, and our brand new Dexie up and running tonight. :)

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  29. Thanks for posting this. My son is about to be diagnosed and this helped. I've accepted it's gonna be a potentially scary ride, but seeing the level of support and understanding from others, as well as your own personal strength shows me it's gonna be okay. So thanks.

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