Isn't that how all horror stories start?
Well, this story has it's share of horror. That's for sure. But at least you know up front that it has a happy ending. Maybe that will making reading (and writing) it a little easier.
I've been putting this off. Telling this. In detail.
It's not pleasant.
But I want you to know. I know that YOU want to know. I know that you care (Thank you!) and I know that telling these stories is important because we learn so much from one another. And it's not like I'm not already constantly reliving it... So here goes...
Last Tuesday, during the day, Sweetpea's pump alarmed. She was with my parents. They called and said that the pump said "Not Primed - No delivery". Weird. They came to school so I could trouble shoot. I took the pump off of her and reprimed it and filled the cannula. All unhooked. I hooked her back up and gave her a tiny bolus for the snack she had eaten. Everything seemed fine. The pump seemed fine.
After school, I met Jason and his parents for dinner at Outback Steakhouse. Sweets LOVED the bread! She ate a couple of pieces. Her meal was steak and veggies. So the only carb she ate was the bread. We bolused to the best of our ability and went on with the night.
She loves playing Nanny and G- Dad. They were having a grand time back at our house. Dex kept beeping that she was climbing. We thought it was just the bread. And she'd just eaten. Finally, around 7:45, J tested her. She was 500.
We thought that was really odd. Really high. But... we thought we might have been off on our bread calculation. And he did test her twice. So, J corrected. She got a 1.6 u correction. And she had cheese and ham for bedtime snack.
I put her to bed. As we laid there reading stories, the pump alarmed. I pulled it out of the pouch. It was wet. And the cap was loose. It said the same thing, "Not Primed. No Delivery".
Hmmm.... I unhooked her. I primed the pump and filled the cannula into the sink. I tightened the cap. The pump was wet - but it did not smell overly like insulin. I thought maybe it was just sweat from running around. I hooked her back up and put on cream to do a site change. We'd just done on the previous night but I figured we might as well. I checked Dex before I left her room. It said 400. That was 8:45.
I grabbed the baby monitor. I never take the baby monitor. I don't know why. I always forget it. J usually remembers. But not me. That night - I got it. I don't remember doing it or why I did it. I just did.
I hopped on the computer. I was trying to blog about her diaversary the next day. I was struggling. Words were not coming easy. Year two is different than year one.... I posted on facebook about the pump. Someone mentioned that it might be related to the cap. If we got a new cap, that might fix the problem. J ordered a new cap and had it overnighted.
We started to watch TV. We heard Dex beep. Three Beeps. It was 9:45. We assumed she was coming down.
J went to check on her. He came to the landing where you can see over the stairs into the family room. "It says she's low." he said. "WHAT?" I said. "NO way..." He went back to test her. She was 32. Double arrows down.
He yelled for me. "I need help! She's not drinking."
She had been asleep. Sometimes it takes her a minute (I did not know she was 32...). I ran to get some icing to rub on her gums. I ran upstairs and she was sitting up in bed. Her eyes were open and she was looking around. She was crying and trying to drink.
She had drank about 3/4 of a juice box. But she wasn't drinking any more. I tried to get some icing in her mouth. She fought me. She was crying. A lot. It was hard to tell if she was just groggy from being asleep or if she wasn't with it. At first I thought she just had not woken up yet. I was calm.
She wasn't there. Her eyes were glassy.
I grabbed the meter and tested her again. She HAD drank half of a juice. The meter read LOW.
That's when it all starts getting a little blurry.
I ran downstairs to get the glucagon. I seriously did not think she was in any huge danger. I grabbed the gluc and the syringe that I had rubberbanded to it. I opened it and started to get it ready. J yelled that we were out of juice upstairs. He had carried her to the top of the stairs. I threw him a juice box and tried to fill the syringe. At this point, I was thinking along the lines of a rescue dose. I was in a hurry. I didn't remember exactly what to do. I ran back upstairs. I filled the syringe to 5 u.
About that point, he yelled that she was having a seizure. I took the syringe and jabbed it into her arm. Her arm was there. It had no clothing on it. Then I dropped everything and ran for the phone. I grabbed the phone from our bedroom and ran back into the hallway.
I remember asking him if we should call 911. He said he didn't know. I dialed 911. I did NOT hit send.
She was laying in his arms at the top of the stairs. She was SCREAMING and crying. J and I were both totally freaking out.
I dropped the phone to look for the gluc. I knew she needed more.
I couldn't find it. I had thrown it down and I didn't know where it was. We had another one in her bedroom. (This is why you need more than one!) I ran in to get it. Then I ran downstairs to get another syringe. (I don't know why I did this...but it was a good thing I did...) I ran back up and started to get it ready.
This was when she had another seizure.
This was not a pretty seizure. The first one had been slight. This was a full body seizure. She made these noises... He got her on her side.
I was shaking so badly. I could hardly focus. I missed the gluc vial and BENT that gluc syringe in half. So it was a good thing I had the other syringe there. I filled it up and jabbed it into her arm. Again, arm was right there.
(The aftermath - what was left. The paramedics picked up all the sharps.)
She SCREAMED. It was a blood curdling scream. She was looking at us... but she was not there.
J was trying to keep her from passing out or losing consciousness. "Stay with, Sweets. Stay with me." He just kept yelling it over and over.
I picked up the phone to call 911. When I held it to my ear - they were there. I have no idea how. I KNOW I did not hit send on that phone.
I start to try to explain what is going on and get the ambulance to our house. I'm totally freaking out by now. I'm crying and screaming into the phone. I ran downstairs to unlock the front door. When I did this, I opened it. The alarm went off. I couldn't remember the code. So the sirens started blaring. I just kept screaming into the phone "WHERE ARE THEY? Are they coming? Please hurry. Please hurry. We need help."
About that time, we saw the lights out the front window. J went outside to flag them down. I held Sweets on my lap. Her eyes were open and she was looking at me. She was crying. But she wasn't really there. Slowly, she started coming around. I asked her what her name was and she told me. I also disconnected the pump.
The next thing I knew, the paramedics were at the top of the stairs. They were looking at her and listening to her and talking to her. She told the paramedic what her name, how old she is, and when her birthday is. He asked (told) us we needed to go to the hospital.
I needed clothes. I was dressed for bed. So I ran into my room, threw something on and ran back. I carried her down the stairs and out the door and into the ambulance.
In the ambulance, we tried to test her again. We could NOT get the *&@#$ meter to work. I used about 5 strips. The paramedic had his meter and he used about 4. FINALLY, we got a 60. And off we went.
I kept my eye on Dex the whole time. She was hovering right around 70 the whole way there. We got her to drink 2 more juice boxes on the way. She was quiet and kind of out of it. She was shaking.
The hospital we went to is a satellite of the main campus. They took us into the ER and got us situated. It took a little for the staff to get that she has Type 1 diabetes - the seizures were directly related to low blood glucose. The ER doc - while nice and I'm sure very well trained, seemed confused. They kept testing her with their meter and it was a good 50 points higher than what our meter AND the Dexcom said. We were freaking out because she was starting to drop again. And they were doing nothing.
GLUCOSE DRIP, PEOPLE! I was getting so agitated. I did not know what they were waiting for. FINALLY, they got her hooked up. They were talking with the folks at base and finding out what to do. The endo on call wanted us transported to base. So once they got her glucose drip hooked up, they loaded us back into another ambulance and transported us downtown.
Sweets perked up around then. She was talking to the transport team about our upcoming trip to Disney.
By this time, it was 3 am. The endocrinology floor was full (of mainly new dx's... ugh) so we were on another floor. She finally fell asleep around 4:30 am after a shot of Lantus. Her bg was finally up to about 200.
We spent the next day in the hospital. We had to go back to shots. Unpopular - but we used the numbing cream and she was a total ROCK STAR!
It was, by weird coincidence, her diaversary. Two years earlier we were in the same hospital. Learning how to deal with Type 1 for the first time.
The RN we worked with called Animas and talked to them about the pump. They did not think that it had anything to do with the pump. They did not want to get us a new one. Finally, after telling them that the buttons on her pump had the writing worn off and that is a safety concern for a small child, they agreed to overnight us a pump.
After getting home, we read about a recall on Animas cartridges. Ours were not the lot numbers that were recalled. However, it sounds eerily similar to what the recall said was happening.
So what happened?
I don't know.
It may have been a myriad of things... all coming together to form the perfect storm.
It could have been that she had gotten no insulin that evening because of the prime problems and that caused the 500 bg.
It could have been the large correction without food.
If could have been that there was an occlusion that was undetected (due to the faulty cartridge) and that pushed extra insulin through when we corrected.
It could have been all of those things. Or none. We don't know. We may never know.
Personally, we think the cartridge had a problem. We think she got more insulin than she should have. Animas is interrogating the pump and cartridge and hopefully we'll learn something from that.
Regardless of WHY it happened, it happened.
It was the scariest night of my life.
We seriously thought we were going to lose her.
All I can say is.... Thank You, God. Thank you for sending your Angels. I KNOW YOU were with us. Why else would I have taken the monitor that night - of all nights - when I never do? Why else was 911 already on the line when I picked up the phone?
Thank you, God, for Dexie. Dexie saved her life. Plain and simple. If it had not alarmed, we would not have checked on her for another hour. I can't even think about what might have been...
Sweets is fine. She's her normal self and thinks that riding in the ambulance was fun!
J and I are not so fine. We are shaken up. We are upset. We can't stop reliving it. Can't stop thinking about it. We're scared. Scared to let her out of our sight. Scared to put her to bed. Scared to go to sleep.
Thank you all for the kind messages you have sent! I will try to answer you all personally! Because I truly cherish all of you and your kindness and love. I'm a still a little out of it... so bear with me. But know that we have felt your arms around us, lifting us up in prayer and love.
So there you have it... What I can remember about about the scariest night of my life. One I pray we never repeat. One I pray you never experience.
Check out What I Learned From My Nightmare to read my lessons learned.
How scary!! I am so sorry you guys had to go through that. It sounds like you had angels there guiding you for sure. Very happy Sweets is ok.
ReplyDeleteWe NEED a CURE!!!
((HUGS)) to you and SweetPea.
Hallie,you are so brave for sharing this with us. I was crying and shaking just reading tthis.
ReplyDeleteI thank GOD Dex was there! And you are the mama pancreas you are. Sweets is such a trooper!!
Love you!
Hallie, my heart breaks for you. And for my own mother who I put through things like this more than once. I was in tears by mid-post. As soon as I get off-line, I'm calling my mother to tell her I love her.
ReplyDeleteI wish there was a way to tell you that it'll be okay. And that she'll be fine. But I can only imagine your fear as a parent as seeing her in that shape. I'll be praying for you and J that you'll have peace. And that this will never happen again!
i am so sorry you guys had to go through all this! hang in there! much love to you all!
ReplyDeleteThank you for sharing! Provers 31:29 states “Many women do noble things, but you surpass them all.”
ReplyDeleteSo glad to see you and Sweets smiling today.
Wow. I know my parents must have felt the exact same way over 20 years ago.
ReplyDeleteMy heart goes out to you, your husband and daughter. You're quite the team. You do what needs to be done.
xo
Holy crow!! That does sound like a terrifying night! I am SOOO sorry you had to go through that! I pray that is the only night like that you EVER have to experience too. Our daughters are so close in age so I can feel your anxiety right along with you. I will be hugging my Ellie a little tighter tonight and checking that baby monitor and Dexcom before we go to bed. Thank you for sharing your story.
ReplyDeleteThat just hurts my heart and I can't even begin to imagine how scary it was for you guys. Thank God for happy endings!
ReplyDeleteI am so SO glad that Sweetpea was ok. I can only imagine how shaken up you and your husband were and still are. SO SCARY!!! I just want to thank you for sharing the story of what happened. As scary as it may be to read it and think about it happening, your story will help me stay strong if it ever does happen to us. You and J are amazing and so is Sweetpea...
ReplyDeleteI am so sorry that you guys had to go through that. We went through a similar incident a little over a year ago. Logan was not on the pump yet. He woke up screaming and looked like he had a stroke. He was completely paralize on his left side. The paramedics tried to push dex 50 and his veins where starting to colapse. I to this day do not feel comfortable with him going To bed any lower than 180 even on the pump. We never hear the alarm because its so quiet. I sleep on the floor by his bed when he has lower numbers because we have nothing to warn us. no CGM, no alert dog, and minimeds alarm is a tiny quiet little beep. Hopefully you will never have to go through that again. I think once is enough to let any of us parents know that D is going to do what it wants until we get a cure.
ReplyDeleteSO glad I knew there would be a happy ending...not sure I could have made it through otherwise. I'm still sitting here all teary-eyed! I can't imagine how terrified you and J must have been that night and how scared you must still feel by the events! I hope you, J, and Sweets never have to re-live anything like that again! Thank you for sharing this though...since reading your initial post about it I've been keeping a close eye on Charlotte's pump...she has been running higher than normal lately and has been tough to get back down in range...not sure if it has anything to do with the issues you guys had (our cartridges weren't part of the recall either), but am being extra-vigilant about things (esp at night) knowing what you went through. ((((HUGS))))
ReplyDeleteMy legs were like jelly the entire time reading this. You are amazing...you got her through it. Thanks so much for sharing, as difficult as it must have been to rehash that horrible night! Lots of hugs from Alaska!
ReplyDeleteI have been thinking about you guys all day. I am soooo glad everything is ok now. I am soooo sorry that you guys had to experience that trauma. (and it is trauma, have no doubt) Take it slow and try to rest, this will take time to digest I'm sure. I have a stomach ache just reading this, you guys must be just dazed. Thank you soooo much for sharing this story too. Regardless of why it gives everyone who reads this an immediate reminder to check our kits, get them placed, and train all that need to be in how to use it. Give sweetpea a kiss from the Fincham family and you guys did wonderfully...Dex warned you, but you two saved her life. ((hugs))
ReplyDeleteI just realized I was holding my breath the entire time I was reading this. I cannot imagine what you guys went through. ((hugs)) Thank you for sharing...in a way, it helps to read it, to know how to prepare ourselves...
ReplyDeleteSo glad to hear she is okay!
Oh my gosh, how terrifying! I'm so sorry you had to go through that. At the word "seizure" I totally lost it. This is exactly why I've come to hate when people ask how my daughter is doing. How do you explain how quickly things can all change? You are a truly brave D-mama. Thank you for sharing this story. Now I need to go check my sleeping daughter's number.
ReplyDeleteThank you for telling the story. I am sure it was not easy to retell. Hopefully by putting it out there you will have some peace. We love you and I have not been able to stop thinking about it since you posted originally.
ReplyDeleteHallie, I am praying for you . . . all three of you . . . still. Love and (((HUGS)))
ReplyDeleteOh my gosh Hallie! I cried through this whole post. I am so happy and relieved that you guys are all okay...if not 100% yet. Thank you for sharing so we all remember to be prepared!!! I am so glad Sweets is better and can get back to her funny shenanigans! Love y'all!!!
ReplyDeletewow. reality hits home. something we type 1 diabetes moms can appreciate and fear. our daughter was diagnosed only 2 months ago, a little sweetie too and we already know too much fear of what may happen. thank you for sharing and thank goodness she is okay. jennifer
ReplyDeletewww.type1diabetic3yearold.blogspot.com
I am so thankful for the many miracles that occured that night. Sweetpea is meant to be your daughter. Your love and vigilance is such a blessing! It is moments like these that change us, and make our course more clear.
ReplyDeleteLove you friend!
Wow, thank you for sharing. G was once 34 and I know that glassy stare you are speaking of...it was horrible. G came back around after a few juices thankfully. Thank you for all of the reminders of the Glucagon, the syringes to be attached, juices in the room, etc. I try to keep all "stocked" but good to be reminded it is a life situation and it does MAKE A DIFFERENCE! Blessings to all of you.
ReplyDeleteTears of joy that Sweets is OK. Tears of shared stress, sadness, fright, and concern.
ReplyDeleteI pray that God will continue to heal your family and hold you in His arms. He was truly with you during that storm and is using that storm to inform and potentially save other T1s.
Can't even properly remind right now. Too busy crying. So scary Hallie. Makes me sick.
ReplyDeleteOh, Hallie! Big hugs to you and your husband and your little girl for having to go through all of that! It's such a chilling reminder of what this disease is capable of. Try to remind yourself and your husband that you made it through it to the other side. You both managed to do what needed to be done and saved your daughter's life. Hopefully it never happens again, but if it does, you'll have the sure knowledge that you can pull her back through!
ReplyDeleteThe cell phone thing...there's a safety feature on cell phones wear if you push in 911 and don't "send", it'll do it for you!
Thank you for sharing your story hon and I am glad SweetPea is ok. This is all so scary. Its good you were so prepared and for all accounts, you remained quite calm throughout. You are an amazing mom.
ReplyDeleteYour entire experience is very upsetting and I am so grateful that Dexie was invented and available to you guys! I said the very same thing that technology largely funded by JDRF saved Sweets life! I am especially troubled by your experience in the ER. We experienced similar treatment during our sweet ones Feb. 13 ER trip. Sadly, it seems that ER docs and staff are ill-prepared for T1 patients. After much confusion on their part, doing mostly nothing, and 3 assessments of asking us the same questions over and over again, they determined that due to a stomach virus she had become dehydrated causing her to pass ketones and that she needed IV fluids. Duh, that's why our Endo sent us to the ER and she even called ahead and told them why we were coming! So two vital hours later, she finally got hooked up to IV fluids. VERY FRUSTRATING!
ReplyDeleteI surely do believe there are angels among us. When we had a similar experience, there was no way to explain the knocking on the door that woke us and helped us catch our daughter's low. (We didn't have CGM's then.) You did everything you were supposed to, everything you'd been taught, and in that terrifying moment, you came through for your daughter. You saved her life doing all you did, prior to 911 arriving. There isn't much time in a situation like that and to you explained the situation as it were, in a rush to save her precious life. I am glad you have a different pump to use. A reminder to us all, to check our dates on our glucagon, refill our supplies, and always be prepared.
ReplyDeleteIt is true that the kids bounce back much more quickly than the parents, isn't it? Thank God she is ok. I'll keep sending positive vibes your way!
ReplyDeleteMy heart breaks for you - my son (now 13) was dx'd at the age of 3. when he was 4 he had a seizure at 4:50 AM in April. I wasn't able to sleep for a long time. I would make him sleep in my bed with me (I was a single mom at that time). It was the following September his sister was dx'd - her first question "if she was going to have one of those things?" - the following year within 12 days of his first he had another seizure at 4:50. From this point I checked his BG at midnight and then at 4 AM. Every year when the time changes I get nervous - but he hasn't had another one. Praising God! Thanks for sharing your story. I was deeply touched to not be alone. Family Motto: WE NEVER WALK ALONE
ReplyDeleteWe had a problem with my son's cartridge and tubing leaking at the top. Yours sounds just like what they described when they did that recall. Ours comes apart and then un-primes. I am so sorry! I hope you get it figured out and NEVER have a night like that again! Mine just left for school. He said he didn't want to leave me and he's ten. He never says that. Now I want to go get him and hold him close!
ReplyDeleteThank you, sweet and brave Hallie, for doing the second most scary thing this week . . . writing about this wretched event you just want to wipe clear from your memory.
ReplyDeleteThank you for the details so other D-rents can be prepeared . . or as much as we ever can be.
Thank you for showing us that even one of the best pseudo-pancreases around can be rattled, but not beaten down.
Thank you for sharing what was unimaginable to most of us, but can happen to ANY of us within the blink of an eye.
<3 <3 <3 <3 <3 <3
Sending so much love and many hugs to all of you!
ReplyDeleteSo glad Sweet Pea is her sweet self and so glad she such wonderful parents!!!
Thanks for sharing your scare - It's a lesson in learning for everyone who reads it!
HUGS!!
Kelly K
I appreciate you sharing this story Hallie. So many people think "D" is not a big deal. They think "insulin" is a CURE. It is a big deal. There is no CURE. People DIE from Diabetes.
ReplyDeleteLove to you and your family.
I have lived this nightmare too many times to count. My son has been T1D since age 14 and went on to acquire adrenal insufficiency which causes hypoglycemic unawareness... the lack of adrenal function deprives him of the physical warning of lows. I vividly remember the first "episode" of seizures. It has haunted me ever since. That was 16 years ago. Given his hypo unawareness, the nightmare repeated itself numerous times since. I checked him constantly in the overnight hours. He hated my "intrusion" as his teenage years set in. I secretly placed a baby monitor in this 16 year old boy's room in hopes that I would allow myself to sleep. Then... he left for college. I had begun suffering from anxiety attacks, but now that he was out of my sight, they got worse. He graduated, and, as any guy in their early 20's, he got his own place. Ever since he left my home, I have called him every single morning at 7:00 a.m. He knows the routine... if he does not answer within one hour, the cops comoe a knocking on his door. Although he understands my fears, D has clouded this Mother-Son relationship. Now, finally 32 years old, he has seemingly conquered this dragon and has been doing eons better. I still worry. I still call every morning. I still cry. I still ask God to heal him, or to at least heal me enough to accept the things I cannot change. Did I mention that my marriage fell apart when my boys were three years old (twins)and had to endure this by myself? It would ghave been so much more bearable if I had someone there with me. Ironically, my sons' dad (my x-husband) has been T1D since his early 20's and has never seen our son experience one of these unconscious seizures. I have often asked the Lord why he has so much confidence in me, because I sure lack it when I self-reflect. This has changed my life so profoundly. I am still alone, but at least my sons are doing well and, for this, I am eternally thankful.
ReplyDeleteRoseanne
Hallie - I'm so happy that this story has a happy ending. Sitting here crying, knowing how quickly this can happen and how fragile life is.
ReplyDeleteMuch love to you, your DH & Sweet Pea.
First, I am so, SO glad that Sweetpea is OK!
ReplyDeleteSecond, thank you for sharing. There are so many lessons for all of us T1 parents in your story.
Third, I am MAD that Animas doesn't think it is their problem!?!?! Maybe it isn't, but wouldn't they want to know FOR SURE? And it is so different from my experience with them which was that my son's pump screen was getting darker and I couldn't adjust the brightness any higher. It seemed to work fine otherwise. They just said, "We'll send you a new pump tomorrow!" And I assume it was working fine, because we used all the same settings and his BGs stayed the same with the new pump. That part just makes me MAD! But I'm glad that in the end, you are getting a new pump.
Oh Hallie! I'm so sorry. This story brought me to tears. What a scary experience! I really just wish that no one would have have to deal with this! T1 D just sucks! No mother should ever have to see their child like that! Sending my love. You are in my heart and prayers today!
ReplyDeleteYou just reminded me why I use all my free time as a mom of twin toddlers to write about and advocate for diabetes. I pray you never go through something like this again. I cannot imagine the fear and pain this has brought you. This post made me bawl for sure. I am right now doing a cgm study where my physician allows me to try out a cgm while he watches my graph (it's blind to me) and after 3 days we talk about the results and see if insurance covers me. I hope they do. Reading about how the dexcom alerted you to your child's blood sugars made me realize it would be so great if all diabetics had access to a cgm. Again, my heart goes out to you and your family. Hang in there.
ReplyDeleteOh Hallie.... I am shaking... and crying.... how easily it and how FAST it can happen is utterly terrifying. THANK YOU so much for sharing this story... thank you for your stark honesty, and for your realization of how important it is for others to know your story. One day, it may just save another life.
ReplyDeleteWhat a nightmare! Thank you for sharing with us. I know it must be so hard to relive. Im so glad she's ok. (hugs)
ReplyDeleteHave you ever heard me say that looking back there were times I SHOULD have used the Glucagon, but I didn't ... because I wasn't sure if I should, I was scared, whatever...
ReplyDeleteYou just described it.
All those lows. The "passing out lows" I've talked about over and over again. They happened about once a week -- she'd hit her head -- she was just a little baby. Only 2 when they were happnening.
Funny noises
Not there
Screaming
It's horrible.
I'm not afraid of Glucagon anymore.
Thank you for sharing...so glad everyone is okay.
God bless this journey.
I just became aware of your blog from a friend of mine that had it posted on her f/b. I was reading this KNOWING how your daughter was feeling during this. I have been type 1 for over 40 years. I was diagnosed at the age of 9. When my sugar gets so low its like a nightmare! And worse if I am sleeping and wake up in the throws of an insulin reaction. I have recently (sept of last year) got a dexcom. I LOVE IT!!!! The alarms are great. In the past my husband had the ability (God given, I say) to wake up and know my sugar was low. I have told him I dont need him anymore at night ;) Just kidding. But this has been a God send for sure. Not sure how I survived for over 40 years without this technology. I do not have a pump but my A1c has come down two points since having it. It is very scary to be having the reaction and I bet it is even scarier watching your loved ones going through it! Keep up the good work
ReplyDeleteDebbie
Wow, reading your story was like reliving the seizure our daughter had a couple years ago. All I can tell you is that the nightmares do eventually subside - for the longest time, my husband couldn't even enter the kitchen where it happened. I saw it over and over again in my head when I looked in that corner and I would burst into sobs any time I saw a seizure scene on a TV show. But I don't think about it too much now - she even had a minor seizure a few months ago and I think we handled it really well. The nightmares subside, but you'll never forget - it keeps you on your toes even more, as if being a D parent isn't stressful enough. Don't hesitate to seek counseling or join a support group - it's very much a form of PTS to see your child go through such a horrific thing.
ReplyDeleteI know you probably get the pats on the back for being so on top of things like we did - for saving her - I resented those comments because it's what every D parent does, every day. But it does show your strength, and you're allowed to give yourself credit for being strong enough to face the situation despite being scared out of your wits. I know how hard it is to prep a glucagon when you're hands are trembling, and how hard it is to focus on what you're doing when you're transported into this surreal existence where everything is blurry and sounds seem to come from so far away and nothing seems to move fast enough and moves too fast at the same time. You came out of that victorious and stronger, so yes - allow yourself to feel good about that. I hope you never have to go through that again. Love and hugs. -Karen
Wow, reading your story was like reliving the seizure our daughter had a couple years ago. All I can tell you is that the nightmares do eventually subside - for the longest time, my husband couldn't even enter the kitchen where it happened. I saw it over and over again in my head when I looked in that corner and I would burst into sobs any time I saw a seizure scene on a TV show. But I don't think about it too much now - she even had a minor seizure a few months ago and I think we handled it really well. The nightmares subside, but you'll never forget - it keeps you on your toes even more, as if being a D parent isn't stressful enough. Don't hesitate to seek counseling or join a support group - it's very much a form of PTS to see your child go through such a horrific thing.
ReplyDeleteI know you probably get the pats on the back for being so on top of things like we did - for saving her - I resented those comments because it's what every D parent does, every day. But it does show your strength, and you're allowed to give yourself credit for being strong enough to face the situation despite being scared out of your wits. I know how hard it is to prep a glucagon when you're hands are trembling, and how hard it is to focus on what you're doing when you're transported into this surreal existence where everything is blurry and sounds seem to come from so far away and nothing seems to move fast enough and moves too fast at the same time. You came out of that victorious and stronger, so yes - allow yourself to feel good about that. I hope you never have to go through that again. Love and hugs. -Karen
Oh Hallie, I'm glad sweetpea is safe now. I pray you NEVER have to go through that again. I try to picture in my mind getting the glucagon and trying to give her a shot with it just to make sure I know what I'm supposed to be doing. I'm hoping we never have to do it.
ReplyDeleteWhat a nightmare! I'm so glad Dex was functioning; the pump, obviously malfunctioned. If the cap on the Animas pump is loose, a lot of the insulin in the pump can be delivered. Animas knows this. And knows it can cause death. They send letters warning you to change the cap every six months to a year or so. Minimed can also malfunction and deliver all of its insulin; I don't know what causes MM pump to do this. I am shocked, after all this, you had to give another reason for Animas to send you a new pump. Shocked. Beyond. Belief. If a cap on the Animas pump is loose, disconnect from the body before tightening or all of the insulin in the pump can be delivered. I am sure you disconnected before you did this. NOW, the problem, as I see it, is that if the cap is loose to begin with, from now on I would assume that the loose cap could cause problems with the pump which cause more insulin to be delivered. This I did NOT know. And this is what so obviously happened. This is frightening, and I will now not switch back to Animas even if they do communicate with Dexcom. Because we know the caps have a tendency to loosen (hence the admonition for the new cap replacements). But we have NOT been warned that finding a loose cap on a pump means that more insulin could have been delivered.... only that if you tighten a cap WHILE CONNECTED TO THE BODY, could a dosing error occur. Thank you for sharing your story, Hugs to Mom, Dad and Sweets for all the trauma that you had to go through. Thank God Sweets won't remember the seizure; I have heard they never do remember it. Good bless and keep you. P.S. The pump was WET and Animas STILL would not just give you the replacement? Insulin does smell like Band Aids but is it possible that after a few hours the smell evaporates?
ReplyDeleteJust want to send you lots of hugs. We too have lived this type of scary night and pray every night that we won't live it again.
ReplyDeleteI had a seizure almost 7 years ago and I still get so scared we found out strawberry angel food cake gel works really well that was the closest thing to my mom at the time thank goodness she was home. My mom said I was awake but not there. I had completely blacked out and I only remember waking up in the ambulance and it felt like I had been holding my breath for a really long time. I am thankful she is ok much love Sarah
ReplyDeleteI am the mother of 2 Type 1s. I feel your pain. I am glad it all came out alright in the end.
ReplyDeleteYou are a hero. I'm so glad that it had a happy ending. I hope if the need ever arises I will be just as brave and fast acting as you were.
ReplyDeleteIt is awful when the technology fails you...one time we were in Hawaii and my DH's blood sugar was reading high (300's) on the finger sticks. He also has an internal BG monitor but it was apparently not calibrating properly. So he took some insulin and also ate low carbs. But still his BG was reading in the 300s. We were at a botanical garden and he sat down and then became unresponsive. Now this is not a short term high BG symptom! A worker asked if we needed an ambulance and I said yes. There happened to be a doctor there and I did DH's BG another time and it still showed high. He said to give him just a little more insulin. By the time we met DH at the hospital he was fine...because his BG was LOW and not HIGH! They gave him some food/whatever. What had happened was that the BG strips probably got messed up due to the heat. The internal BG monitor was not calibrating w/ the BG strips because the strips were bad. So whenever the symptoms don't match the readings...believe the symptoms!
ReplyDelete-Stacey (oct96)
Thank you for posting and thank God for a happy ending. I hope we never have to use our glucagon, but this makes me realize that I need to be well prepared and well stocked. Thank you and may you never have this experience again.
ReplyDeleteI had the hardest time just reading this post. I can't imagine having to write it. So glad you were there for SP. Thanks for the reminder that you can never be too prepared.
ReplyDeleteOK, so, I just sobbed my way through reading your story.... partially for you, and partially because I had a similar night not all that long ago. That was the night that I became 100% convinced that DD has guardian angels-- the ones who woke me from a dead sleep with an urgent feeling to go check her NOW. There's no other explanation. I'm sure that's what made you grab that monitor, too.
ReplyDeleteSo glad Sweets is ok... and I pray that you will be ok with all of it soon, too. It took me a while to not wake up for every single check with a feeling of panic, but eventually I started feeling "normal" again. I pray this happens for you soon!
::hug::
God bless you. I would've been just as shaky and freaked out. I'm so sorry you had to deal with it, but thank you for sharing your very real story. If nothing else, it gives us the warning to be ready. We just got a new glucagon set yesterday (ours was out of date). You will still be shaken up for a while-hug your sweetpea and hold her tight. She's still here, and we are thankful. <3 Holly
ReplyDeleteWow. I've never met you, but I am childhood friends with Kelly Einhorn Pankratz, and she just posted a link to your blog about this night you experienced with YOUR blessing, as she describes her children. I don't have diabetes. The only actual experience I have with it is a mother who has given herself Type II through her poor eating and exercise habits for 40 years, and a student in my sophomore Health class who recently died - undiagnosed - of Type I. The language you, Kelly, and so many other T1 moms (as you so courageously refer to yourselves) speak is foreign to most of the rest of us. I hear Kelly use so many of the same words as you have, in your new, coerced vocabulary. Though I don't know the actual meaning of many of the terms, as a Health teacher and your care in describing, and my care in reading, I think I get it. At the very least, I felt my own heart rate rise as I read your recollection of your experience, and I think of Kelly's little Levi almost daily - though I never met him and haven't even seen Kelly since we were both in our late 20s. I wish you strength, continued courage, answers, and support...in all of the ways both people and God provide those things.
ReplyDeleteHallie we've been there - it's horrible and it changes everything, at least it did for us. I am thankful she is okay and know that eventually you guys will relax a little bit more than you are right now, but that vigilance just got more extreme I know, oh how I know. I am so sorry you guys had to go through this, diabetes is tough alone yet knowing that the one way to treat it is also the cause of other scary reactions is so awful. I am just so so thankful you are all okay.
ReplyDeleteTake care friend and thank you for sharing this with us online, thank you for being so detailed about it so that others will know.
((Hugs))
May God bless your family! You will be in my prayers.
ReplyDeleteJust wanted to say HUGE (((HUGS!!))) We have lived through one seizure as well and there is nothing like it. Nothing like seeing the vacancy in the eyes and wondering if you're ever going to get your little girl back again. I'm so glad that everything worked out well and that she's back to her normal self. I hope that you, too, can find a normalcy. I can't help but listen to your song that is playing "our God is greater, our God is stronger." He WILL be with you each day, helping you to find some kind of peace and hope. ((HUGS!))
ReplyDeleteSCARY, SCARY, SCARY!!! SO glad Sweets is okay!
ReplyDeleteThanks so much for sharing this.
Love to you, Jason and Sweets!
SCARY, SCARY, SCARY!!! SO glad Sweets is okay!
ReplyDeleteThanks so much for sharing this.
Love to you, Jason and Sweets!
You have my deepest admiration for your calm under such dire circumstances. You did what you had to do and took care of your precious child. I am glad she is okay.
ReplyDeleteWow...I am so sorry you all had to go through this and so thankful everything turned out okay. I started looking at your blog from looking at Laura Houstons on facebook. Even though my son as had diabetes for over 7 years we don't have a strong diabetes community around us other than at camp once a year. So finding these blogs on here and hearing from other moms is such a wonderful thing, even if there are things that are hard to hear. You are such a strong woman and sound like a wonderful mother and you were definitely being watched over that night. God Bless you all and thank you so much for sharing so much of yourself and your life.
ReplyDeleteHey, sorry that happened to you guys. It sucks, I know.Check your FB messages. I sent you some info and my number in there. If you need anything, including a calm voice to help you through another one, please dont hesitate to call, day or night.
ReplyDeleteThank you for sharing that!!!!! I am so sorry you went through this and you are so great for sharing it with the rest of us. After I type this I am going to rubberband another syringe around the glucagon.
ReplyDeleteI just wanted to say I am so glad that she is okay. I am so sorry you and your husband are having to deal with the emotional aftermath. THank you for sharing your story and being brave enough to put it out there. I hate D and I hate what it does to us. The fewar, the worry and the loss. You are an amazing mom! Big hugs to you and yours tonight!
ReplyDeleteMy little sister Kaitlyn has Type 1 also, my mom shared your blog posting on Facebook today and I read it (when I normally never do). What a terrifying night. Kaitlyn has not had any severe complications of diabetes yet, she's been diagnosed now for 4 years, and I hope she never does. That little girl is the light of my life, and I waited 18 years for a little sister. I know that without a doubt, we will probably face something like this and I cannot even fathom how it feels. I wish I knew exactly how to convey in words what I am thinking for you, but words are evading me at the moment. I am thankful for you and your family, that your daughter is ok. I hope and pray you do not have to endure another episode like this any time in the near future.
ReplyDeleteI don't know what to say except I'm sorry and thank you.
ReplyDeleteI'm again sorry you all had to experience this. And very thankful that you have shared this with us so we may learn.
Couldn't help but cry when I read this. This happened to me years ago, when I was about twenty years old. I have such a hard time thinking about a young child going through that (not to mention, her poor parents!). Hope she is doing much better and never has another one of those nights. Thankfully I haven't had another in the last fifteen years. I wrote about mine recently as well in my blog, kind of as therapy for me. Thanks for sharing your story.
ReplyDeleteWow! What a nightmare, i really feel for you having to have gone through that. Very scary story and it brought tears to my eyes.
ReplyDeleteSince diagnosed I have always had great respect for those who have had diabetes from very young ages and now especially their parents!
I am just reading this now and am so, so sorry for what you and your daughter have been through. I am SO glad she is okay, and that you guys came out on the other side of this. You are in my thoughts and prayers, and big hugs to you and your girl
ReplyDeleteI am just reading this now and am so, so sorry for what you and your daughter have been through. I am SO glad she is okay, and that you guys came out on the other side of this. You are in my thoughts and prayers, and big hugs to you and your girl
ReplyDeleteOMG - I'm so behind on commenting. My heart goes out to you!! Not sure what else to say... except that I hope nothing like this EVER EVER happens again.
ReplyDeleteJust came across your blog. My daughter (type 1 for 6 years) just suffered her second seizure this week,the first was nearly 3 years ago. I completely identify with your anxiety. No matter how diligent you are unfortunately these severe hypo episodes can and do happen! My daughter is now a teenager and the angst of overnight sleep overs, parties and driving are so very stressful, In the back of your mind is always the anxiety that one day those dreaded seizures will occur!! Here's hoping neither of our girls ever experiences another!!!!
ReplyDeleteOh thanks, I am sitting here at working trying to fight back the tears. :)
ReplyDeleteNo really thank you for posting about your experience. We were diagnosed 18 months ago and thank God nothing like this has occurred. I think about it all the time. My daughter is at school right now and after reading this I want to head over there and pick her up.
I am glad everything turned out okay.
I'm reading this right now. I can say that I've got tears in my eyes, and I'm shaking. Thank Lord she is okay, and still fights on. She is the most beautiful little girl, and she deserves more than this.
ReplyDeleteI'm the diabetic in my family. I've had it for 9 years this summer, and I have forgotten how dangerous diabetes can be.
As the one living with it, you don't really think about how it can affect you or that you possibly could die from it - you just live through it day by day. I don't remember anything else, diabetes has been my life, and you can't really worry all the time. Eventually you end up playing it down.
I've come to that point, tending to take everything not so serious. Nothing has ever happened yet. Why should I worry?
After reading this I realize that there's a chance that things can go really bad. And you never know before it actually happens. I don't have a glucagon-kit. I don't have a cgm. I've never had a seizure due to my diabetes or been so low that I can't think or treat myself. I usually wake up during the night when I'm low.
You've made me realize I need to be more concious about the risks with diabetes. I won't be afraid, but more careful and responsible about my diabetes.
Thank you so much for reminding me. It must've been very hard to write this, to basically go through that horrible night again. Take care of your gorgeous daughter, and I'm thinking of her.
I saw this post on Pinterest. My husband was diagnosed with type 1 diabetes last month. We're still figuring out how his body reacts and he drops into the 50s frequently. He goes into a fog, he gets confused and mean and isn't himself when he's that low. Every time we get his sugars back up he feels so much better and doesn't understand why they make me so scared. He tells me I overreact and that it's not a big deal. A few nights ago I had him read this story of your terrifying night and it finally finally clicked for him that it is a big deal and that things can get serious fast. Last night he was feeling "a little low" and tested at 38! Because of your story he took it seriously. Because of your story he asked for and accepted my help getting him back up as quickly and safely as possible. After words he asked if we could read the glucagon instructions again and be ready to use it if ever needed. I'm not exaggerating when I say that your sharing has changed my husband's perspective and may have saved his life. Thank you & God bless you
ReplyDelete