Monday, April 16, 2012

Holding my breath

I am trying to type so quietly.  We're in Will's room on the 8th floor of Meyer at Johns Hopkins University Hospital.  Will is exhausted.  And I am sitting here next to him, feet up on his bed, intently watching his face... waiting for a sign that a seizure is starting.  I don't want my typing to wake him up, I want him to sleep deeply for 20 minutes, and then I want him to wake up, eyes fixed to the left, lips smacking.  For the first time ever in my life, I want to watch my son have a seizure.  I cannot stop holding my breath, waiting for this event to occur.

We arrived right on time at Hopkins this morning, after picking up my brother for moral support.  And by "moral support," I mean that I needed help carrying all our bags in from the van.  I had a tough time packing minimalistically.  How do you pack for a trip of unknown duration?  I made the executive decision to pack Will for 7 days.  Perhaps that is an arbitrary number, but it allowed me to move from staring at my empty suitcases to getting us on the road.  I was also instructed to pack a couple of days for food for him, and also needed to pack every single tray-top toy and Elmo DVD that we own.  When all was said and done, we entered the hospital today with a large suitcase, two duffel bags, my work bag, a canvas bag, two small cooler bags, and my purse.  And a partridge in a pair tree.

They didn't have our room ready right away, so we hung out and watched the world go by.  Will enjoyed several iPad apps, and Superman and I were happy to move up to our room in the early afternoon.

It took a while to get settled into the room. The room isn't very large, and Will's wheelchair and all our luggage took up a lot of space. I got creative with storage, so thankfully now we aren't bumping into things every time we turn around. The challenge will be trying to find everything when it is time to leave. After we finally were settled, the EEG technician came in to start adhering Will's leads to his head. She seemed excited to hear that we had just shaved his head. I tried to explain that we did it to avoid a stinky head as the week went on and we couldn't bathe Will. She was excited that the leads would stick better. To each his own.

Though Will has had a couple of EEGs and a sleep study done before, he's never had EEG leads stuck on like this. He's used to the sticky paste that releases with acetone. They use glue here... stinky stinky glue that requires a seriously scary chemical to release. After the lead is stuck to your head with glue, then another glue-soaked pad is stuck on top of it on your head, to adhere to your hair. Then they use suction to remove the liquid glue and leave a lovely twice-adhered metal lead to your head.

49 times over. Will has 49 leads stuck to his head.  They said they could add at least 20 more if they needed to, though I question if he actually has that much vacant property on his scalp right now.

He certainly didn't enjoy having them adhered. I think the glue was making his eyes water (or was that me?) and the sound of suction near his ears and eyes made him very upset. A couple of times, he'd be looking at me and the suction would stop. He'd stop screaming and turn his head towards where the EEG tech was standing. When he saw her still standing there, he'd start screaming again. Good thing she didn't take it personally.

About 24 leads into the adhesion party, Will stopped screaming. He either realized that it wasn't too bad, or he was just plain tuckered out. Regardless of what it was, the second half of the EEG set up was a lot quieter than the first.

When everything was completed, the EEG tech wrapped Will's 49 EEG leads into a colorful ponytail of wires behind his head, and wrapped his head in an entire roll of gauze.  She said it was so he wouldn't pull anything off of his head.  I really think she was making him look like a Q-tip to get back at him for screaming at her so much.

He hasn't complained about the leads on his head. He didn't make a peep when he got an IV.  He's eaten well all afternoon, and been happy going between his hospital bed and his wheelchair. Unfortunately we aren't allowed out of the room while he is inpatient and hooked up to the EEG, so hopefully this good mood continues.

They watched Will on EEG for a little while this afternoon.  He showed no seizure activity so they decided to step down the dosage on one of his anti-seizure medications tonight.  Slowly and methodically, they will step down his medication and watch closely.  In addition to monitoring the EEG, they have him on video monitor at all times.  The eye in the sky can see everywhere in the room except the bathroom.  Guess you know where I'll be changing for bed.

Will has now been sleeping for an hour.  The window for his typical seizure has passed.  I find it odd that I'm sitting here and rooting for a seizure, but the truth is that is why we're here.  When I was talking with the fellow and attending today, they told me that ideally they would like Will to have 3-4 seizures while he is here.  Though that seems unrealistic to me given his history, it is their goal.  I find the team here very easy to work with, friendly, logical, and thoughtful.  It puts me at ease.

His chest is rising and falling in a slow rhythm now.  Will fell asleep when the lights were still on, and both the nurse and my brother were here.  There was no playing with the g-tube line.  There was no kicking.  No laughing or singing.  There was pure exhaustion.  I feel the same way myself, only I cannot take my eyes off of Will's closed eyes.  I keep waiting.  Holding my breath... until tomorrow night, it would seem... when we try this all over again.

1 comment:

mmmandy! said...

You are AMAZING! Praying for Mr. Will! Love you!!