And Just Like That

The month of March began with our family enjoying an incredible vacation at Disney World. We planned the trip to coincide with the Nationals spring training games in Orlando against the Braves. We spent two days cheering on our beloved Nats and the rest of our time exploring all that Disney has to offer.

Oliver was such a star for our trip. All of our worries and fears leading up to our trip faded away. Oliver slept beautifully, ate lots of Dole Whip and ice cream, he loved each ride. It was almost too good to be true. At one point I looked down at him and for the first time ever thought, Oliver can beat this. Sanfilippo won't take him. We are going to stay in this happy place for years to come. I have never had such delusional thinking. I pride myself in being rational and realistic. However for the briefest of windows, I enjoyed the blissful idealism.

And just like that things changed.

Oliver has been off for about a week. He has had two sleepless nights, which for our little sleep lover is totally out of character. He has been incredibly fussy. On Wednesday he had a small gelastic seizure. He was giggling and his face drooped significantly. The next night he had twitches and tremors as he snuggled on the couch with Matt. We cancelled some plans and tried to take it easy.

Last night he fell asleep quickly, but within a few hours he was restless. Each time I checked on him his breathing sounded gunky (it is allergy season). His pallor seemed off. I decided to blow up our twin air mattress and sleep in there with him. My mother's intuition was heightened and I have learned to respond to those gut feelings. He and I were up late as he tried to settle back into sleep. Once his breathing became more rhythmic, I finally allowed my body to get some much needed rest.

We slept in, enjoying the chance to catch up on some snoozes. I got him up and decided to give him a quick shower in order to start out day. We have a shower chair and thankfully I opted to use it. I will sometimes just have him stand for a quick cleaning. I pulled out comfy clothes, knowing we would be staying home. I turned on the hot water in the shower to warm the room. Oliver was relaxing in his chair and the bubbles did flow.

Moments later he leaned back. This was unusual. He likes to remain seated during a bath. And then his eyes. They rolled back into his head, showing only their whiteness. And I knew. Here we go. He was having a seizure. We have never been through a Tonic-Clonic (grand mal or convulsive) seizure. I have seen videos, but typically closed my eyes within seconds. The helplessness of the moment was always too much for me to witness. He started convulsing and growling, his body twisting and jerking. I held him close, knowing I was incapable of saving him from this trauma. I told him I loved him. I pleaded with God to not take him. It's not time. I tried to protect his knees from slamming into the tiles. And then he settled. Three minutes felt like hours. His feet continued to tremor. His eyes were closed and his head slumped. But he was breathing.

I called Matt and told him I needed him at home. I called our primary doctor and left her a message. I called my friend who I knew had been through this and would answer my call. I threw up from the adrenaline. I got Oliver dressed and settled on the couch. I surrounded him with pillow pets and his Mickey Mouse blanket. And I watched him.

He continued to tick. His face was still drooping and twitching. Matt arrived home. Our pediatrician and neurologist both called. Meds were adjusted. Rescue meds were ordered. School called and plans were discussed. Emergency options are in place. His physicians confirmed the horror that is a TC seizure. They acknowledged my fears. Friends called and offers to bring food were made. Prayers were given and graciously accepted. Team Oliver was in place and running smoothly.

I will sleep next to him tonight. He will stay home tomorrow. I feel a sense of panic to keep him close, as if my mother's instinct can protect him from Sanfilippo. 

Even sweet Watson is aware of the changes. He has been incredibly watchful of Oliver. He wants to climb up and sit next to him more, he has been laying by his feet. And tonight I heard a noise through the monitor. When I went to check it out I found our furry beast on my make shift bed keeping an eye on Oliver as he sleeps. Watson's senses are on high alert. Mine are as well.


I can't even imagine how scary that was. I'm sorry for your loss and the painful road you are still on. I pray for great peace over your family. Jesus be near.
Aubrey. said…
I feel helpless. But I hear you. I see you. I hurt for you. I pray for your family. I hope - in some very small way- it helps to know that.
Crystal Hinman said…
Thinking of you. Hoping these last 2 days have brought some calm.

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