Friday, February 18, 2011

They left his shoes...

Yesterday was a pretty bad day for Will. He still wasn't feeling 100% better from a virus that sent him home from school earlier in the week. He was a bit gaggy with mucus when he woke up. But he was excited to get on the bus and go to school.

After school, Will had a note in his bag from his teacher saying that she thought he might have had a couple of very small seizures that day. He would kind of zone out for a couple seconds, then his eyes would roll back in his head, and then he would be back. It wasn't something that I was too concerned about. It didn't sound like his typical seizure.

Nate and I had grand plans for Thursday night. We have a very long backlog of DVRed shows to watch together. This week has just been so crazy that we were looking forward to sitting down and vegging together. But of course, I had to upload some photos first, so I was in the office and Nate was downstairs waiting for me. Sighing loudly.

I heard Will sputter and vomit from the next room. He's had a couple of seizures that have been all the same, so I know that when that kind of sound comes out of the room within 30 minutes of bed time, Will is having a seizure. I called Nate and we got Will into the bathroom. He had his seizure typical left side facial paralysis.

He continued to vomit for a bit, longer than usual. He calmed for a second, and then seemed to have another seizure. He was so out of it. Wide-eyed. Gaze to the left. Lips smacking. Teeth grinding. Sounds of my fear. Will's left hand started to jerk. That had never happened before.

Will seemed to come around after about 10 minutes, though it seemed like a lot longer. We got Will stripped down to clean off the vomit when he launched into another seizure. Number 3 by my count. This time, Will's entire left arm was jerking slightly, as well as his head. Still, the lips were going and the teeth. Oh, those teeth. I tried to bring him around, but it wasn't doing any good. Nearly 30 minutes had passed. He was naked in a diaper, in my arms, his little body out of everyone's control. We were trying to talk to him, touch him, anything to get him to respond. Nothing. I have never felt so helpless.

When the fourth seizure started, worse that the previous three, I called to Nate to dial 911. These seizures weren't stopping. We couldn't do anything for Will. And I didn't want to risk the time it would take to drive him to the ER ourselves. The fire department arrived first, within 10 minutes (again, felt longer). They drove down the street quietly at Nate's request, as to not wake the other sleeping boys in our care. They administered oxygen to Will, which seemed to slow his racing pulse.

Will's seizures wouldn't stop, though. The paramedics arrived shortly thereafter. We held Will still while they tried to put in an IV. No luck.

They administered versed via a nasal mist. It was enough to stop Will's twitching, though he never truly seemed to lose the wide eyed, large pupil look that he had for the past hour. They strapped his car seat onto the stretcher, strapped him into his car seat, wrapped in a beach towel. We debated having them take him all the way to UNC. The ride seemed so long given how long everything had already been going on. We opted for the WakeMed Pediatric ER, much closer to the house.

By the time they had the stretcher loaded in the ambulance, the fire truck was gone. Will was asleep. Nate jumped in the rig and I kissed them goodbye. They pulled away silently. I stood in the doorway and cried. Useless. Helpless. Torn between wanting to go and needing to stay. Luke and Matthew were still sleeping inside.

When I finally calmed down and peeled myself away from the front door, I turned around to a living room in disarray from everything that had just happened. Feeling as helpless as I did, I started to clean up. I threw away needle covers, adhesive and gauze pads, straightened the couch. I made some phone calls. I went to wash Will's vomit-covered pajamas only to remember we were out of laundry detergent and I had decided to get it tomorrow instead of today.

And then I came upon them. Will's shoes. In all the hustle and craziness, we had forgotten to pack them. Now from a rational perspective, Will doesn't need shoes. For a long time, he didn't tolerate them. He finally tolerates them now, and we put them on as much as we can.

But in my emotional state, Will should have had his shoes. I lost it. Crying again. That helpless, useless feeling. I decided to document the shoes. It seems silly now, but at the moment I did it, I felt like I was paying homage to my son. Like it was somehow honoring him and his strength and growth, his future. His smile. I took out the camera and took photos of shoes. Somehow, it calmed me down.

At the hospital, they gave Will some additional anti-epileptic medication. They got an IV started, drew blood for labs. He still had some jerking in his legs, but the stronger medication stopped that quickly, and Will was finally able to sleep. They did an x-ray to make sure he hadn't inhaled any of his vomit. The doctors admitted Will for observation, though there were no available pediatric beds. Nate spent a rough night in the peds ER.

This morning, I got Luke and Matt ready for day care. Luke was not himself. "Where is Daddy and Will?" he kept asking. I tried to explain that they were at the doctor because Will was sick, and that he was going to day care for a day of fun. He didn't want to hear that.

"Mommy, I don't want to go to day care today. I want to stay here and wait for Daddy and Will." For a kid who has speech and language delays, I was in awe. What a comprehensive and compound statement. And do you know a three year old with that level of understanding and compassion?

Luke really was remarkable this morning. When we arrived at day care, one of his best friends was standing there crying, while Luke walked in crying because he didn't want to be there. He saw his friend crying, dried his eyes, and went over to give her a hug and ask her what was wrong. By the time I left, Luke and his friend were laughing over her Minnie Mouse doll. What a kid.

Back at the hospital. Will's labs revealed that his current anti-epileptic medication was below "therapeutic" levels. We believe this to be due to the fact that Will has been eating like an absolute champ over the past couple of months, and has been gaining weight like never before. So his medication dosage hadn't been increased for his new weight. Additionally, seizure thresholds are lowered when you have an illness. Will just got over a virus earlier this week.

So what happened was basically the perfect storm of seizures.

After the strong medication wore off, Will was back to being himself. Though it took a while, they did discharge him today. He's still groggy, which is to be expected after the huge physical toll his body experienced last night. We got him home, gave him that bath that he was supposed to get last night, and put him to bed. He's now curled up happily in bed, slow steady breathing, and peaceful. Finally truly resting.


Green Mama said...

Amanda, what an amazing parent you are. I am totally in awe. I'm proud to be (in some long ago, far away world) your friend.

mmmandy! said...

Oh, Manda... you are my hero! I was getting teary just reading about your experience. Can't imagine how tough it must have been for you and Nate. I'm sooo glad that everything is OK. You guys are the greatest parents and your boys are beyond lucky to have you!!!

JoannaP said...

I am so relieved he is home and resting soundly. Such a trooper. I hope you and Nate get the chance to veg tonight, or maybe get some rest for yourselves too.

Matt Mescall said...

Amanda, you two are amazingly strong! I thought my little boy was sweet, but I think Luke has him beat. :) I am glad to hear that Will is gaining weight; I remember that being a struggle. Can you tell us more about how the weight gain is coming along in a future post? I hope you have a nice quiet weekend and get to burn through the DVR list.