October 29, 2020
DAY 5 UPDATE:
I used to love October. It was the start of so many fun and exciting things. A time when I knew we’d start seeing family more often. That first changed when we lost Eric’s dad to cancer 7 years ago. A few years later, his grandma passed away. This last week of October is proving to be difficult for our family.
We can never leave the house early enough. It’s so hard to get going in the mornings. The drive to the hospital always seems longer than it actually is and I’m glad Eric is able to do the driving. Today I’m thinking of a symbol for Shaylyn. I want to put it on her pumpkin. I’m thinking of an ‘S’ in the middle of a heart-shaped strawberry. It combines a few of her favorite things.
We get to Shaylyn’s room with a flurry of activity. They tell us the breathing tube has been taken out and she’s doing things pretty much on her own. Her eyes are open, but there’s an emptiness to them. She really does look like a confused child. I notice they’ve taken her hair out of the quick bun it was in and she’s now got a French braid along the top of her head. She’d love the way it shows all the colors in her hair.
Because she is alert, we do a quick video call with her boyfriend. When I hold the screen up so she can see it and she recognizes him, she smiles! Eric and I may feel slightly jealous, but overall it’s a good thing she recognizes a different face.
The Physical Therapist comes in shortly after and starts working with her. We can tell she is tired, but she does as instructed. She zonks out shortly before the PT is actually done and he’s tells us he’ll try to come back in the afternoon and try getting her to sit up.
Now we just want her to rest. They’ve untethered her wrists to allow for more movement, but it means more work for everybody to try to keep her from ripping all her tubes out.
Around 12:30 we were told that the little bit of oxygen she’d been getting was turned off. That means she is completely breathing all on her own! The nurse thinks we’re in the clear as far as her lungs go.
After lunch we bought Shaylyn a stuffed white cat. When we hand it to her we joke about it being a cat she can actually keep since dad’s not allergic to it. That’s when we get our little grin.
She’s been manipulating her new cat, dog and Squooshy constantly. When she sleeps she usually has one in each hand.
She’s needed the help of oxygen on and off today, but it’s never very much and it’s through the use of one of the small plastic tubes that rest in your nostrils. Much less intrusive, probably still just as annoying.
It’s slightly awkward now. We have a Patient Care Tech in the room with us constantly. Their main job is keeping Shaylyn from pulling at all her tubes.
She’s in and out of sleep. Mostly in that in-between state. It’s a full time job keeping this girl from pulling on these tubes. At one point she tries to get her cat to sit on the bed rail. It falls. She tries again and the PCT helps keep it there.
During one of her in-between states, she starts signing with her right hand. I didn’t catch it from the start, so I’m not sure if it’s letters or something she learned years ago from her friend, *Teryn. After asking her to repeat it a couple times, we think she was trying to spell EAT, although it came out a bit jumbled.
She’s been resting for a good chunk of time this evening. We’ve kept the lights low and our voices quiet. The door is also kept mostly shut and I think it helps her stay asleep. When the night nurse came into the room to introduce herself, she saw Eric in the corner and asked if that was Shaylyn’s brother. I made sure they knew it was her dad and that he’s an old man.
Our big goals for tomorrow are getting her to swallow so the feeding tube can come out and to have some movement in her bowels. If things go well, she may be moved out of ICU tomorrow.
*NAME CHANGED TO PROTECT IDENTITY