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.