Wednesday, February 29, 2012

Shocking Turn of Events...

A lot has changed since I posted last night's blog entry. I fed the boys early and was planning to put them to bed a little earlier than usual. Miss Sara was on her way to stay with the boys while Ed and I met with the psychologist to discuss our egg donor plans. But our night didn't quite go as we had planned. That is the understatement of the year. If you ever wondered just how quickly things can change overnight around here...grab a snack and a seat and read on.

Gavin ate all of his dinner - the most he had eaten all day as he was very congested with his cold. I brushed his teeth and gave him some homeopathic cold medicine...and turned away to clean up. I glanced back at him and for a second I thought he had fallen asleep right there in his highchair...but my radar went off. Gavin never falls asleep like that. As I looked closer, I realized Gavin was grey. I shook his chest - "GAVIN!" - nothing. I ripped the tray from the highchair and as I grabbed him to pick him up...I really thought he was gone. His body was lifeless and completely dead weight. Ed was working in the basement and Brian was playing in the den. I banged on the basement door and screamed "Something is wrong with Gavin!!" and picked up the phone to call 911. We laid him down on the rug and Ed promptly checked his mouth to be sure he wasn't choking as I talked to the dispatcher. Gavin was struggling for each breath and his heart was beating out of his chest. For a second (or two) I thought, "Well...this is how our story is going to go. I'll have to explain how I inadvertently killed my child by giving him Homeopathic cold medicine."

It seemed like an eternity before the police showed up. And then another eternity before the ambulance arrived. While we were waiting Gavin was unconscious - not responding to anything or anyone. Brian was very nervous and spent the entire time hiding in the other room. Once the paramedics arrived I split my time between talking to them, answering questions and reassuring Brian that his brother (and his Mom and Dad) were okay.

The paramedics quickly determined what I had feared - Gavin was having a seizure. And he was also burning up. Before dinner I had taken his temperature and it was normal, so I was shocked that this fever ambushed me! Gavin never "came to" as they put him on Oxygen and loaded him into the ambulance. I rode in the back with him and they raced us (with police escort) to the closest hospital for emergent care.

This local hospital had NO idea what to do with Gavin. Well, in their defense they did take his temperature (104.9!!) and gave him (eventually!) Tylenol and Motrin to bring it down. After two tries for an IV and vomiting all over himself - I insisted that we be transferred to DuPont, his regular hospital where almost all of his doctors are. They agreed, but said that they would need an IV for transport. So they called two of their NICU nurses to come down. I don't know why I even let them, but two tries later (that's now a total of four sticks) they still couldn't get an IV in. I was done. And so was Gavin.

We were so grateful to see the DuPont transport team. They got an IV in immediately and I lifted Gavin onto their stretcher and buckled him in.
We were on our way for the hour drive to the hospital.
Ed went home and packed clothes and toys and more for me and Gavin. We knew we were going to be a while.

Pulling into DuPont was like pulling into my driveway. We were home...and Gavin knew it. He perked up pretty quickly once we were there.

We were told that Gavin had three long seizures which could have been brought on by the fever. They also could have been a warning sign that Gavin was about to have a fever. Or the two could be totally coincidental. They wanted us to meet with the neurologist and get studies done to be sure. I was reassured - at least ten times last night and ten times today - that the medicine I gave him had nothing to do with his seizures. Thank God. But I will never use that medicine again. Ever.

Gavin was admitted, but there was not a single room in the entire hospital for him. So we settled in to our emergency room (which was pretty awesome, actually!) for the night. Half the night Gavin spent in my arms sitting in a chair or pacing as far as his IV and other leads would let us. The other half he spent in one of their metal cribs. We knew to bring his own blankets so he'd be more comfortable. Lucky for me, he actually fell asleep. Passed out is more like it. But I was too afraid to close my eyes for more than an hour or two. I feared another seizure that never came.

As I paced the floors with him in my arms, I couldn't help but think of what could have been. What if this had happened when Ed and I were romantic runaways this past weekend and it was just Kara and the boys? Or what if this had happened after we left for our meeting with the psychologist and Sara was alone with the boys? There had to have been some divine intervention with the timing of this. It makes me fear ever letting Gavin out of my sight (even when he's sleeping!) but I know that's unreasonable.

Around two thirty in the morning, the nurse noticed that Gavin's IV was leaking. I tried not to panic - losing an IV is a terrible ordeal for Gavin. He's such a hard stick and had already been stuck five times already. Thankfully, the nurse was able to save the IV...but had to pull off all the tape and re-do it which, as you can imagine, was quite traumatic for a very tired Gavin. There were lots and lots of tears.

Morning came and brought with it a new attitude. Gavin was back to "himself" besides a very runny nose and a cough. We met with the neurologist early and agreed that now would be a bad time to do any sedated testing. Gavin doesn't handle sedation well when he's healthy...we sure don't want to sedate him when he's already dealing with some breathing issues. We also agreed that we should wait until he's healthy to do an EEG on his brain. The doctor wanted a true reading of Gavin at "baseline" - without his illness possibly compromising the results.

What he did tell me was this. Gavin may not have had three seizures. He likely had one long seizure...and that seizure was sent to warn us of a very fast rising temperature that I never could have seen coming. Once the fever hit, Gavin developed "rigors" (said like rye-gers) - a new word I learned from the doctor. It's fancy talk for "extreme chills." Rigors can often be mistaken for a seizure which is likely what happened. He assured me that Gavin didn't suffer any type of brain damage from the seizure - something I worried about. He also told me that because of Gavin's underlying neurological condition, he has a higher risk of having a "seizure disorder" from this point on. Basically, we should be prepared for recurring seizures. This was upsetting news! I'll be bringing Gavin back in two weeks or so for the EEG and for a follow up with the neurologist. He didn't see a need to keep Gavin, given he was acting like himself this morning. But he did say we couldn't leave without learning how to give Gavin emergency medication (rectal Diastat) in the event he has a seizure lasting longer than five minutes...and we also had to be refreshed in CPR training.

While I was waiting for Ed to arrive to pick us up, I arranged two more visits from two of our favorite doctors. I emailed Gavin's geneticist to tell her that we were there and she came down with some pretty amazing news. I wrote before that I had asked Dr. Gripp if we could try a brand new genetic test for Gavin called Exome Sequencing. She said she'd look into it and we would maybe start with some preliminary testing in the meantime. Well today she told me that they had received a grant - and asked if we would like to be the very first family at DuPont to try this groundbreaking genetic testing! She warned me that we would be guinea pigs - that they'd never gone through this process before. I felt so honored - and grateful - that she chose Gavin. That she chose our family. We may find out something...we may find out nothing. And as I always say - it won't change anything in our eyes either way. Dr. Gripp and her assistant, Beth, stayed a while to chat and catch up before leaving me with a ton of paperwork to read and fill out. This should be very interesting.

I also called up to Opthalmology to see if Gavin's eye doctor could pay him a visit. We had an appointment set up for this Friday (at 8:30am - ouch!) but I was noticing after Gavin's seizure that his eyes were red. After all he's been through with his eyes, I don't take any chances. She was nice enough to come down with all of her equipment to examine him in the emergency room...saving me a trip this Friday at the crack of dawn.

Everyone is so nice to us at DuPont. We feel so loved and cared for - and really feel like VIPs when we're there, even though I'm sure they treat everyone that way. We drove home today rather freaked out about this seizure business - hoping that we'll feel comfortable enough to leave the house again. Ever. But we also drove home grateful. Grateful that we were home. Grateful for the calm 911 operator, the paramedics, the policemen. Grateful to neighbors that ran over to offer help - one who was even barefoot! Grateful to Miss Sara who was showed up expecting to babysit for a couple hours and ended up staying until midnight...only to come back first thing this morning to care for Brian. Grateful for a wonderful hospital and doctors that know and care for Gavin like he was their own.

And grateful for all of you that are my Facebook friends...who followed this saga every step of the way. Knowing that you were praying for our son - thinking positive thoughts for our family - and offering kind words of encouragement - it helped me more than you can imagine. I always feel overwhelmed by your investment in our little family.

There's just never a dull moment around here...


  1. I'm so glad he is home and doing better. I know Phoenix had a seizure due a rapidly increasing fever when he was 2 and I still have nightmares about it two years later. It's a scary and yucky thing to see your child go through that. I hope you never have to use that emergency medicine nor have to go through that again! So glad you all are home now.

  2. Wow - I don't really know what to say except that I'm thinking of all of you and hope that today was much less of an adventure than last night!

    - Elayne

  3. Wow Kate, I'm so glad to hear that Gavin's okay. My oldest had 5 seizures from about 22 months until about 4 1/2. His were always febrile and I didn't know what was going on the first time it happened. I thought he was dying. Hands down, the most frightening thing that's ever happened to me. He, of course, has no memory of them. I know that with Gavin, you have to proceed w/extreme caution anyhow, but I became so vigilant when my guys became sick. I NEVER wanted that to happen again. Can you give him Motrin and/or Tylenol? Our Dr taught us how we could use both safely to get that fever down quickly. They say it's not how high the fever, but how quickly it rises. Both my boys are little hotboxes - lots of high fevers in
    this house! Others don't understand it, unless they've been there. You are such a dedicated, caring Mom. Both those boys are so lucky to have you. Hope you are all feeling better soon. Take care.

  4. Praising God that Gavin is home and you guys are all ok. x

  5. So sorry that you all have been through this and hoping Gavin makes a speedy recovery, and that you get some peace and rest.
    Lisa F.


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