Wednesday, January 30, 2013

The Day My Heart Stopped

It's been quite an eventful weekend:  Four hospitals, 3 ambulance rides, 2 tired and worried parents, and one frustrated baby boy all waiting for answers.

It all started on Saturday.  Andrew woke up as happy and hungry as ever.  Ben helped me finish some math homework and then we all said good-bye to him as he went off to work.  Since it had been a late night the previous night, we were all tired and cranky so I decided an early nap was definitely in order. After nap time, I fed the kids a snack and went in the kitchen to do the dishes.  When I came out like 20 minutes later (we don't have a dishwasher), Andrew was still finishing up his lunch.

I sat on the couch with the baby and Emily, determined to read them some stories.  I looked over at Andrew and noticed that he had drool coming down his face. His eyes were a bit unfocused and his lips were stuck in a half-smile.  I asked him if he was okay.  He looked up at me but didn't respond.  I went over and picked him up.  He gave me a thumbs up sign so I figured he just didn't want to talk.  We went into their room to play with some blocks. Andrew suddenly threw up.  This is when he stopped responding to me.  His eyes stared straight ahead, his jaw was tight, he was moaning, and his breathing was shallow.

I called Ben.  He rushed home from work.  In the mean time, Andrew started shaking (what I now know as convulsing), I knew enough about seizures to conjecture that he was having one but not enough to know what to do during an episode.  When Ben got home, Andrew was still convulsing. We packed everyone up in the car and rushed to the nearest hospital.

At the ER, the receptionist took one look at Andrew and called the nurse.  The nurse picked him up out of my arms, called to the back saying, "I have an unresponsive 3 yo, I need a room and a doctor STAT."  At this point I was sobbing.  The nurse rushed to the back with me (Ben had to stay behind with the kids).  When we got into his room, nurses and a doctor converged upon my son.  They checked his oxygen (which was dangerously low) put a breathing mask on him, poked and prodded various parts of his body, and, since he was still seizing, gave him some emergency anti-seizure medication. Once his breathing was back to a normal level, and he had stopped seizing, they took him back to do a CT scan.  His whole episode from start to finish lasted a little over an hour. After finishing all preliminary tests (all of which came back clear indicating no meningitis, brain tumor, brain bleeding, etc) they went and grabbed Ben and the rest of the kids.  They transported him via ambulance to one of the children's hospitals in our city and Ben rode along with him.

He spent the night at that hospital and saw about 10 different doctors.  They were completely baffled by his episode as he had no priors, no sickness, no behavioral things, nothing to indicate that he would ever have a seizure.  They diagnosed him with a staring spell and sent him home in the morning mostly assuring us that this was probably an isolated incident (7/10 kids have a one-time seizure).  They gave us rather vague instructions regarding what to do if it happened again while basically assuring us that it wouldn't happen again.

On Monday we all woke up shaken and worried, but hopeful.  Our awesome nanny came over to watch the kids while I went to class and Ben went to work.  I came home directly after my class was over so I could work from home and continue to watch Andrew.  He was tired and seemed a bit out of it, so he went to take a nap (I checked on him every 5 minutes).  After about 10 minutes I went in and saw him awake and staring.  I picked him up and tried to get him to respond to me. He wouldn't. As the hospital doctors told me, I watched the clock. After 5 minutes passed I called the neurologist's office per the doctor's instructions.  They told me to hang up and call 911, so I did. At this point he started convulsing.  I called Ben. I took a video (so the neurologist would know what it looked like). I cried and cried and cried.  When the paramedics arrived, he was still convulsing. After a few minutes he stopped on his own.  Off to the hospital we went.  (Thankfully my nanny was there to take care of the other kids and have things ready for Ben when he came home.)

Since this was the second very prolonged seizure - over an hour for the first and over 20 min for the second - the doctors were much more concerned.  They stabilized him at the hospital, did a few more blood tests, and transferred us again to another children's hospital.  He was admitted, again, and we talked to a dozen more doctors.  Since it was the second time, I was much more confident in relaying the events which led to a more accurate diagnosis of primary epilepsy.  He was started on anti-seizure medication, given an EEG, and sent home but this time with clearer instructions as to what we needed to do if this happened again.

I feel dazed by this all.  My perspective on life has drastically altered as I now realize certain things are just not important anymore.  I am still figuring out how to live life now that I have this constant worry.  I find myself just letting the kids do what they want because is it really that important to not have a lollipop in the morning?  Or eat cereal for breakfast, lunch, and dinner? Or stay up until 10pm?  I am sure that in a few weeks things will return to normal and we'll start some sort of routine. But right now? We're eating candy in the morning and watching movies together at night.


  1. This is such a tough trial. I'm thinking of you.

  2. Poor little guy. How scary for all of you!

  3. Hi Amber -- With all this chaos and stress, are you postponing your move? xxoo Melanie

  4. Amber - I wish so much I was your next-door neighbor so I could be there for you in person.

  5. I read your story with my heart in my throat. I am so sorry that you and Andrew have been going through such a difficult time. I will hold you all in my heart and send every good wish that Andrew's condition will stabilize. You are such a good mom; I know you will do everything and more to help your beautiful boy. I just wish you didn't have to deal with another challenge. xoxoxoxo

  6. Sending lots of hugs to your family Amber! I can't imagine how scared and worried you felt! Much love!

  7. Amber,

    Know that I am thinking of you, Andrew and your entire family. Everytime I saw your posts on FB, my heart jumped. Sending good wishes and strength. xoxo

  8. Oh Amber. This same thing happened to me when Matthew was 6 months old and it was so scary. I am here for you if you need to talk. I am sending healing energy your way!!!

  9. Oh, Amber! How scary! My eldest had a seizure once, but it was only once - but my cousin had several. The medicine helped him and he grew out of his seizures. Not that that helps. In the moment, you are paralyzed by fear. In the aftermath, you just want your kids. Close and safe. I made so many diffent choices about how to raise my girl after that terrifying experience. Hugs

    (as a side note, I'm an idiot. I've been checking your blog regularly. Or so I thought. Instead, I had bookmarked a particular post. So. I hope that makes you laugh at my idiocy. Laughter is good. I missed you.)