So in case you’re just tuning in, we are in the hospital with Rae.

She has a staph infection (third one since June) and E. coli and wasn’t responding to antibiotics at home, so her Kennedy Kreiger doctor said to be more aggressive and do IV antibiotics to wipe out the infections quicker.
So here we are.

We are in isolation since staph is a contact infection.
Isolation meaning neither Rae or I can leave the room and when people come in they suit up like they’re going into surgery, or like we are the most repulsive things they’ve ever seen.
A few years back Big S and I got hooked on this show called Solitary. It was a reality show type experiment where they put contestants in a small room by themselves and made them do challenges against each other (in separate pods so they only knew how others were doing by the computer telling them) to test their ability to do things alone. You could opt out of a challenge by hitting a button on the wall, but if you were the first person to hit it, you lost the competition and went home. I distinctly remember one of the first challenges in one of the seasons was listening to a screaming and wailing child, which, as you can imagine, in a room all alone, can be quite exhausting. (See where I’m going with this?) I think it only took like 4 minutes before people starting hitting the button and trying to make the crying stop.
Isolation is kind of like that, but I’m not going to get paid $50,000 if I win. I think the only thing I win is a pass to sleep in one day when we finally get to go home.
I can’t go down the hall, I literally can’t even go to the door to hand food service my tray. I tried, she looked at me like I had leprosy, apathetically put on gloves before taking the tray and smugly nudging her head for me to get far away from the door. I’m a disgusting human being, apparently. Last time we were here in June, Rae and I often took advantage of the playroom and the kitchen (it has a coffee maker and cookies,) but apparently they think I’m going to go in there and rub Rae’s infected stomach all over everything. 
Which I wouldn’t. 
That would be rude.
Rae can’t get down to even play on the floor. She’s been dehydrated, so she’s been hooked up to fluids or her feeding pump since we got in Wednesday night.
It’s feels a little lonely only having Rae to talk to. Don’t get me wrong, she’s quite the conversationalist:
Rae Rae, we have to sit down.
“No mom”
Let’s play with blocks!
“No mom”
We should take a nap.
“No mom”
I love you, Rae.
“No mom”
Every time her nurses come in I feel like a dog whose human just came home. Ohheyimissedyou.Letstalkaboutthings.Howwasthelastfewhours?Icantbelieveyouleftmeherealone.Ohyesiknowwearestillwatchingfrozen.Pleasedontleavemeeeeeeeee.
Then my parents and Big S came last night. Which was the high light of my day.
Big S even stayed and cuddled Rae til she fell asleep so I could have some alone time.
But the only way to get alone time is in the bathroom.

Mmm, nothing says relaxing after a long day of Rae screaming at everyone who touches her saying  “I’m mad! I’m sad! All done! All done!” like a dirty bathroom that hundreds of sick kids have used. You know what would really make this a party? If I could just have someone sneeze directly into my mouth. That feels like the equivalent of hanging out in a hospital bathroom.
I will say though, Rae is always joyful. Even through the pokes, the isolation and the lack of sleep, she is joyful.
Here’s to hoping we get to go home tomorrow!

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