Tuesday, December 27, 2011

The Scariest Night Ever

Warning: This post is long! I wanted to write about this ever since it happened but haven’t felt up to it until today. And writing this has felt healing almost as if I am purging the experience.

It’s ironic sometimes how things can be going so well at one minute and within a few hours end up disastrous. That’s exactly what happened Christmas Eve night.

After having such an amazing time with Noah at the Christmas Eve candlelight service, we all went back to my Mom’s house for our "Christmas Eve Extravagana."  We had a great time eating and spending time with one another.  Noah was in a great mood and was full of giggles. We let him stay up later than usual and he finally headed to bed just before 11.

Around midnight, I headed to the bedroom. We were spending the night at my parents’ house and there J, Noah, and I all sleep in the same room. Noah was under the covers asleep in the middle of the bed and J was lying next to Noah  watching TV. I was sitting at the end of the bed with my lap top uploading pictures from the evening while quietly talking to J.

A commercial with music came on TV. I noticed Noah’s legs kick once and thought maybe he heard the music and was fussing about it. But he was still moving so J pulled the covers off of Noah to see what was going on while I quickly stood up to turn the light on. I came back to the side of the bed to check on him (this sounds like it took awhile but it all really happened in a matter of seconds) and saw his whole body convulsing while his eyes were open but rolled back. I immediately knew he was having a grand mal seizure and said so to J. J loosely put his arms around Noah and began quietly telling him it was OK.

I was panicking but desperately trying to hold it together all at the same time. Noah has myoclonic epilepsy (a type of epilepsy where the seizures are more a jerking of the arms and/or legs and usually only last 1-2 seconds.) Noah has (until that point) NEVER had a grand mal seizure and hadn’t even had any of the myoclonic seizures in a very long time. I have known since he was diagnosed with myoclonic epilepsy at 14 months old that he was at risk to develop grand mal seizures and him having a grand mal seizure has always been one of my fears.

I asked J if I should get my Dad (who was sleeping upstairs) at the same time as he was telling me to get my Dad. I'm not sure what we both felt my Dad could do but he is older and wiser and has First Aid/CPR training. I took off running towards the stairs loudly yelling my Dad’s name (later I was told by my Momma I was screaming like a banchee.)  After yelling his name twice he called back and asked what. I shouted up the stairs that Noah was having a grand mal seizure and I needed him NOW. He said he was coming and then I heard J yell for me from the bedroom so I ran back towards the bedroom. J said the seizure was getting worse and to call 911. At this point, my Dad has made it downstairs and is on the other side of the bed gently talking to Noah with Jason.

I ran to the kitchen and of course the phone is not on the base. I ran in the living room and that phone isn’t on the base either. I flipped on a light and finally find a phone on the side table in the living room all the while reminding myself to breathe. I call 911 and get put on HOLD! After what seemed like an hour, a 911 dispatcher is on the line. I talk fast normally and was trying to tell myself to slow down as I explained the situation to her, give her the address, and then run back to the bedroom to check on Noah and answer her questions about what he is doing. I repeat her instructions to J and my Dad.

Noah was still convulsing badly at that point but I know that my Dad and J have him so I began taking care of the things the 911 dispatcher was telling me to do like turn on the porch light, gather up Noah’s medicines, throw on clothes, and make sure the family pets were confined (except I accidentally forgot about Pasiley – poor thing was in the room watching the whole ordeal.)

After what seemed like an eternity, I heard sirens. The paramedics and a fire truck arrived. Finally, Noah had stopped seizing. The whole seizure last about 6-7 minutes. At that point, he was conscious (he never totally lost consciousness) but he was pale and super lethargic. The paramedics took his blood pressure and vital signs. His heart was beating rapidly and his blood pressure was sky high. Thankfully, he was breathing just fine.

Noah was put on the stretcher and they tell J and I that we can both ride in the ambulance. My Dad says that they will follow us in the car. I follow the stretcher out of my parents’ house. My Mom was standing in the hallway and she squeezed my hand. I asked her if she was going to come to the hospital with Dad and she says yes, of course and then told me my brother (who had been asleep in a room upstairs and slept through all of this including my high pitched screaming to my Dad that was so loud they probably heard in the next county) would be coming too.

We get to the end of the driveway where the ambulance is parked and they told us one of us can ride in the back and one in the front passenger seat. They ask who would be riding in the back with Noah and I immediately responded. I sat on a bench across from the stretcher Noah was on.

Not long after getting in the ambulance, Noah began to cry a deep grunting type of cry that I have only heard him cry when he is coming out of surgeries. I had to sit in the seatbelt on the bench and could reach him but did manage to at least be able to hold his hand. I quietly talked to him and reassured him that I am right there with him, that I’m not leaving him, and that if he is scared, it is OK to be scared. I told him that they were taking us to a hospital so the Doctor can check him out.

That ambulance ride took FOREVER (time seems to stop during a crisis and everything seems to take longer!) I’ve decided that I don’t like ambulance rides very much. I could not see out the side window so the only window I could see out was the one in the back and the only thing I could see out of it was the lights of the car behind us which I assumed was my parents and later found out I was right. But because I could not see out the side window, I could never figure out exactly
where we were.

As we neared the hospital, Noah finally began to stop crying and calmed down. We got out of the ambulance and I walked right beside the stretcher as they took quickly took inside the ER.

They checked his vitals and monitored him. He became more alert; signing to us and interacting with the nurses. From that point on, things were pretty uneventful. It was just your standard wait forever in the ER waiting game. After awhile, the Doctor told us that he doesn't really know what caused the seizure. He gave Noah a medicine to prevent more seizures right then and a prescription for more for later and instructs us to call Noah’s neurologist as soon as the office opens back up.

My wonderful parents and brother had been waiting in the waiting room the entire time. I felt guilty because at this point, it was 4 AM but they assured me it was fine and there was no other place they’d rather be at that moment than the hospital. Even though they weren’t able to be back in the room with us, it was definitely comforting to know they were there.

While I was standing in the driveway waiting on the ambulance, I texted a few friends and posted on Facebook via my phone letting others know what was going on and asking for prayers. Thank you for all of you that saw that on Facebook or received a text and prayed. Knowing that my baby was being lifted up in prayer by so many was comforting.

That was seriously one of the scariest things I have ever experienced and I think I aged 10 years in the span of an hour. I felt so helpless and unsure of myself but I silently prayed and knew that God would take care of my Noah.

Christmas Day was unlike any other Christmas Day. We are usually up early on Christmas Day but we all ended up sleeping until after 10 AM because we were so exhausted. When we finally did wake up, we let Noah see what Santa had brought him. We tried to keep things really low key and calm because the Dr. had said that we needed to try and keep him from being overwhelmed or over stimulated and that he needed to be calm and rest. Noah was very clingy and spent much of the day in my arms, which was just fine with me.

You are probably wondering how Noah is now. Thankfully, he has not had another grand mal seizure but he has had some of the myoclonic seizures. Those got pretty bad Christmas Day night so I called the neurology answering service and luckily his neurologist was the one on call. He said we could give Noah another pill from the prescription that the ER doc had given so we did and the seizures slowed down. He’ll be seeing his neurologist tomorrow morning.  I’ll keep you posted on and would appreciate you keeping Noah in your prayers and pray that he doesn’t have any more seizures.


  1. I am so sorry, I know that must have been so scary for all of you. You and Noah will continue to be in my prayers.

  2. Ohh, that sounds like a horrible experience that no mom wants to go through. I am glad he is OK and you are sound enough to write about it. I cannot imagine. I hope things normal up for you soon.

  3. My prayers are with you and your family. So sorry for what you've been going through.

  4. I'm so sorry you guys had to go through all of that. Noah is so brave like his mommy. What a wonderful family you have. God bless.

  5. Motherhood is not for the faint of heart! And you are a brave, beautiful mother. Noah is so blessed to have you. And it sounds like you are blessed with a wonderful extended family too. Many prayers for you all today!

  6. Hey Coley. I am so so sorry to hear that everyone went through this, but glad No-No is doing well. I haven't gotten you guys off of my mind all weekend and decided I will find a way for you to get him his i.p.ad. I don't know how yet, but I am lookin into grants and such. I love you guys.
    That said, so far I have found this :
    I don't know how long the wait is or anything else, and I know you are busy, but it might be worth looking into.
    (Who honestly wanted nothign more than for Noah to be able to tell you Merry Christmas)

  7. God Bless you all, thinking of you x

  8. What a terrifying ordeal for you and your family :( I am so sorry to hear poor Noah went thru such a scary time. I am glad he is "stable" but definitely concerned, as I know you are. I hope the appointment sheds some light and gives you some answers and preventatives. You are a wonderful mother and writer. I don't like the sound of the back of the ambulance- I like to see where I'm going, too. Glad you kept things low-key on Christmas. Take good care xx

  9. I'm so sorry to hear about this and so sorry that you guys all went through that, but glad that the awfulness has at least sort of passed. I'll be sending good thoughts and prayers your way - hope everything continues to improve.

    -Mel the Crafty Scientist

  10. where do you live? We are in Memphis and had a friend in Atlanta deal with all of this (he has down syndrome, like my son)...apparently memphis has one of the best seizure/neurological teams in the country-who would have thought, right here at le bonheur, which we have spent many days there as well...praying for all of you.
    Suzanne and Clay Culpepper

  11. I'm late reading this, but I swear I got tears reading it. Scary, scary, scary. Praying extra hard for you and Nono. *hugs*

  12. Glad to hear he is ok. Seizures are scray. I can't believe the timing - Christmas Eve! Sending you prayers!!!!!