Friday, March 27, 2015

In Pictures and Videos

First he was like this:

Then he got all vomit-y and lethargic and required an ambulance ride to the ER.

When the EMT took this nose mask off, Evan asked for it to be put back on. They let us keep it as a souvenir since he seemed to like it so much.
Evan's PICU room, post-surgery
Sunrise view from the PICU. We were basically on the bay, facing Oakland and a giant cruise ship.

Cheesy smiles and funny faces were the first indication that Evan was alive post-surgery, so we made him ham it up over and over again, just to be sure. He's also obsessed with "take a picture" and "make video" and "watch video" and "let me see."

Once he was off his breathing tube he wanted to be held. Once we held him he wanted to go right back to his bed.  

I love this next video. It was all he could do to open his eyes (one opened more than the other for a few days). I shouldn't have been surprised. This is the same kid who didn't open his eyes for 3 days after he was born. Child Life services brought some toys and we tried so hard to keep him entertained with his limited energy.

Evan spent much of his free time in the hospital learning how to play the ABC song on his new piano iPad app.

First attempt at escape
I love the very beginning of this video where someone in the background asks, "Do you know where the ostomy supplies are?"

"But I don't WANNA go back inside!"
The hospital food menu is drastically improved from back in my day. Evan had access to all his favorite foods and anything he wanted to eat, even if it only stayed down for an hour or two.

Disconnected and feeling good. Precautionary throw up towel.
Evan was discharged Thursday after holding in two meals (finally!) He threw up in the car on the way home. For the first several days at home we kept sheets and blankets covering any surface Evan was on. They proved useful, as he threw up twice more within the first 24 hours. Since then he's finally held everything in, apparently substituting his throw up for some crazy hiccups that he now gets at least 3 times every day. I never thought I'd outgrow the disgust for throw up, but I guess cleaning it up 20+ times in one week helped. It's second nature now.

Recovery has been ongoing. He is doing great with his speech and his mind seems quick, but his body is still weak in some ways. He has taken some independent steps, but isn't nearly to the level he was pre-surgery. He also has a hard time with stairs as well as endurance with his walker or push car. It's super frustrating to go backwards with his progress, but I'm confident he'll continue to improve over the next few weeks.

We went to visit the fire station about two weeks after our 911 extravaganza. The guys who helped Evan were not there, but the other firefighters showed us the fire engines and ambulance up close and gave Evan a firefighter hat and sticker. He was a bit scared of the engines up close, but afterwards he loved playing on the play fire engine at the playground next door to the fire station.

Yesterday I gave Evan a bath--his first in 2+ weeks. When his shunt was placed they made an incision in his tummy to help guide the tubing into his abdomen. He had to wait for the tummy incision to heal before he could soak in water. I'll spare you the details of the various fluids and substances that have been on Evan's body and hair in the past two weeks. Suffice it to say the bath was a good step on our road to recovery.

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