The Scariest Morning of my Life

My family and I are here in WI at my mom's house. When we stay here, my boys sleep on the main level in my nephew's room, while DH and I stay downstairs in the basement, along with my older sister. Well, this morning at 6:15, I heard my sister screaming. I ran upstairs and found her dragging Caleb into the living room, yelling that he was just having a seizure in bed. He'd stopped seizing by that time, but he was totally unconsious. I grabbed the Glucagon and gave it to him. He woke up, but wouldn't talk and his eyes were totally blank. I ran downstairs to get some pants on and then called 911while DH checked his bg-68. This is the first time this has happened. I have never been so scared in my life. I was shaking so bad and was trying so hard not to cry. The ambulance came to take him to the ER and they let me ride along with him. I chose to have him taken to the hospital where he was born and dx'd at since I recognize and remember most of the staff there. He was only there for about 5 minutes when he said he had to pee, but once he was in the bathroom, he threw up. They started him on an IV and I paged his endo back home in MI. They kept trying to get him to eat, but he kept saying his stomach hurt. After about an hour, he ate 2 bites of a sausage, but then ended up throwing that up too, and then he just fell right back asleep. They let him sleep for about an hour and a half and then woke him up. This time he was finally able to eat and keep it down, so they let him go. Overall he was in the ER for about 4 hours. He doesn't remember anything from this morning, except being in the ambulance. It was so scary to ask him who I was and to have him look at me like he didn't know me while we were waiting for the EMT's. He was able to say my sister's name, along with his dad's name though. I know that this can happen again and that in a way he's lucky that this was his first one since it's been almost a year since his dx, but I hope it never happens again. I'm so glad that about 5 months ago I took one of his expired Glucagon kits and read the directions and actually mixed it up. I would not have remembered what to do this morning if I had to rely on just previously reading the directions. I was shaking so bad that I almost couldn't get the needle into the vial to mix the Glucagon. Caleb has always been terrified at the sight of that needle, but I'd always told him if we ever had to use it he wouldn't feel it. I just had always hoped we'd never have to. So needless to say, his endo has us taking his Lantus down to 10u from 12u and wants us to run him a bit higher the next few days. He doesn't want him below 100 at any time. Caleb will also be sleeping downstairs with me for the remainder of our time here. I'm so exhausted, but I know that every sound or move he makes will have me checking on him. How do you get over the fear that it's going to happen again???

 

Thank goodness that Caleb is okay. that is so scary, but you held it together and did what you needed to do. Good job mommy!! ((hugs))

 

very scary, glad he's OK!

 

So glad Caleb is doing better .

Hoping you guys can get back to having a nice visit with your family.

 

((((Hugs)))) I'm so sorry to hear you had to go through this. You did very well under pressure and took great care of your son. Good tip on practicing mixing it up. I opened my case to check the date a few weeks ago and for a moment was puzzled at the contraption so I know what you mean.

I wish I could take the worry away for you. I'm sure it's very strong right now. I hope it gets easier for you.

 

I am so sorry this happened to Caleb . How scary .

 

Not going to lie. I don't think I'll ever get past that fear. Maybe others are better adjusted than I.

Sometimes you can figure out what caused it, and sometimes you can't. The first one was 2.5 years ago. The most recent was....all too recent.

 

So scary. We have been fortunate enough not to have had a seizure to this point, but it is one of my biggest fears. Hope he is feeling better.

 

Wow, am I ever sorry to hear this. You must have been scared witless. Lucky that you ended up somewhere that could take care of it and have him safe quickly. I wonder how Caleb reacted to it...I sometimes think my DD doesn't know when her condition is at its worst...we handle it, its over. If we keep our cool (ha), sometimes its just a little hiccup to her...

You raise a good point, though. I've been wondering about glucagon. My endo wrote a script for two at dx---I'd really like to have more. I have one in a drawer at home that I put in my bag or hers when we go out and the second one is at school. I could easily use two more: one for my husband's bag and one to leave home at all times. Does anyone know if I'll be able to "refill" those prescriptions before the one year expiration?

Again, my best to you, Caleb and all the family. That must have been an awful morning for sure.

 

I am so sorry to have this happen to Caleb. Thank goodness someone witnessed it and you all did the appropriate things, without panic and got him the help he needed.

((HUGS)) You did good, mommy. Caleb is none the worse for the wear, even though you probably are.

 

I am so sorry to hear that Caleb had a seizure. You are right about how you feel. The post seizure symptoms that Caleb displayed are perfectly normal and his wanting to sleep are as well. Seizures can really wipe a person out, so if he seems more tired over the next few days, that is to be expected. I agree with the Endo about keeping his blood sugars higher for a few days as well.
My Nephew has a life threatening seizure disorder so I do understand how you feel having been with him multiple times and calling 911 when he has one. I can say this, You did a great job of handling things. I also know that you wonder if you will ever sleep again. I promise, you will, but I think that you will develop that extra radar attenna that seems to grow out of experiences like this. I have the Aunt variety. You have the mother variety. I can't put my finger on it, but it has helped me save Dylan's life more than once. I will always be thankful for it.
As to getting over the fear that it will happen again, I don't know if I have. I think yes, things return to "normal" but that question is always at the back of your mind, when and if another one will strike. Sleep, yes it will come again. (((HUGS)))

 

How scary! Glad Caleb is better!

"You raise a good point, though. I've been wondering about glucagon. My endo wrote a script for two at dx---I'd really like to have more. I have one in a drawer at home that I put in my bag or hers when we go out and the second one is at school. I could easily use two more: one for my husband's bag and one to leave home at all times. Does anyone know if I'll be able to "refill" those prescriptions before the one year expiration?" - from previous post...

We also got 2 upon dx - one I carry with me and one for the school nurse, but I needed one my son could keep in his baseball bag for after school, so I called my pharmacy and they were able to fill the Rx again for me. My endo wrote out the Rx so that we could refill it once a month. We now have one at home at all times, one with me when we are out, one at school ad oe Andrew keeps in his baseball bag. I pray we never need it, but having it is a little bit of piece of mind.

 

I am so sorry you had to experience this. Thankfully, I believe Caleb won't remember a thing. But you kept your head, stayed calm enough to do what you had to do and give the shot. You got through. Hopefully, this will never happen again. Don't drink, but this calls for a good, stiff drink. You did good.

 

So sorry that you had this experience - But you did very well!

Glad that Caleb doesn't remember much.

 

How horrible!!! I'm glad he's OK now...God bless you!

 

Glad it's ok now, but what a scare. Sorry you had to go through this.

I'm assuming he gets his Lantus at night - you might want to switch that to morning. :cwds:

 

It's terrifying, isn't it? I'm glad he's doing better now. My son had his first at the beginning of last week, and I'm still afraid it will happen again.

You did well keeping your head together. I'm a paramedic, and have seen countless people having seizures. When Christopher had his, I forgot the most basic stuff. I checked his sugar, gave him juice, since he could sit up and drink it. When I talked to the endo, she asked if I had suspended him pump. Um, nope When my DH showed up on the ambulance, he asked if I'd checked his temp (for a febrile seizure). Um, nope again

I don't know when the fear of it happening again will stop - we're still checking him every 2 hours overnight.

 

My heart really goes out to you, I can't even imagine how scary that was. But you and your family did such an amazing job.

 

What terrifying experience. Hope you are able to take some comfort in the fact that you handled this really well and enjoy the rest of your visit.

 

(((HUGS))). I hope Caelb is doing better now.