Day 14 - Big Whoop.

Today's events went by quickly for some reason. It wasn't a particularly eventful day. I didn't take a lot of pictures, although I should have. It was rainy here and we weren't outside much. We did a lot of eating, and that isn't very picturesque. HT even sent me an iPhone app that makes pictures cooler than usual. (thanks yo!) But I've only got a handful today.

(news from home: we found the cat!  -- yay! -- but, the minivan is busted! -- booo! -- )

...real life does not stop. Thank god the semester does.

We began the day on "isolation." Due to the nasal swab we did yesterday to test for pertussis (whooping cough) we needed to be estranged from the rest of the hospital. That means all hospital staff that enters the room must be wearing blue rubber gloves, a big yellow surgical mask, and a big yellow apron to keep his Big Evil Germs from shedding onto them and infecting the populace. It's pretty effing stupid, but they have to do what they do. This all makes life pretty surreal. We felt like the bubble got a lot smaller, and we were even on our own planet in a lot of ways. We couldn't leave. And, everyone who entered looked like they were in costume. Did someone slip something in my drink?

Sam took it all in stride. I told him, when we got up, that we couldn't go down to breakfast. Or to the playroom. Or to the garden. He was initially sad, but was fine with it. No fits. No crying. Just dealt with it.

I wasn't sure how long we would be on isolation. They told us "afternoon." That could mean anything. 

We ordered breakfast in the room. We never do this, because Sam must be on the move. Constantly. But this was new. Sam tore into some pancakes while watching some Sprout Sunny Side Up Show. His breakfast came in the shape of a pancake-moose. Fun! (I got an english muffin and an orange. It was circular... and brown.... )

We made our digs into an efficiency apartment by making "areas". This picture is on yesterday's blog. But whatever. I need material. And I got to use my fancy new app to make the colors funky. This is a picture of our living room. No shoes on in the living room, please. And the "rug" (two hospital blankets) are just flat enough to make cars roll pretty well. Ramps!

 

Child Life Services (or what I call "emergency responders for fun") immediately came down to give us things to do. I didn't contact them - they just came down. We got markers, paper, glitter flowers stickers, and all sorts of crap to make art stuff. It's his buddy Mason's birthday, so we made him a card. Sam really got into the flowers for some reason. It's all flowers. I'm cool with that...

Sam drew the flowers, with some help.

Right after we finished this card,  we were told (at about 10:30am) we were "off isolation". Big woop. No Wooping Cough. ... yay... We all knew this to be true, but they gotta do their thing. So we were now permitted to leave the room. But no more aliens would visit. Bummer.

So we immediately put down our dumb crafts and went out! First stop: playroom. Sam was promised that if he did his vest like a good boy he could make cookies with me (or mom) and Genne, the very excellent child life guru (she is really awesome with kids, and parents. she and this service are just as impressive as the doctors here. swear to god.) When we went up there, Genne dropped whatever it was she was doing and made brownies with Sam. He had a blast making them. Wasn't so into eating them though...

Anyways, onto the next issue at hand: Since he was negative on the nasal swab, we have to do a bronchoscopy. Our Doctors - big D -  tell us that he really should have responded to regular CF treatments by now - tons of vest and inhaled meds, and IV antibiotics. He isn't. It's been two weeks. He's still coughing and he still has a plug in his lower right lobe of his lung. So what is going on? Nobody really knows. The Doctors admit this. They need more information. Perhaps the origin to Sam's problem is not CF related at all. Could be a piece of food in his lung. Could be a bacteria that they didn't find in his nasal swab, throat culture, or sputum culture. 

At any rate, Sam has been sick since January 1, 2011. He is still not better. They need to find out why. The bronchoscopy will tell us a lot about how to go forward. Piece of food? They will extract. A new bacteria, like Pseudomonas aeruginosa? It would have to be treated with two different antibiotics since it's such a tough sonofabitch, and is really bad for CF-ers. 

Sam is scheduled for the bronchoscopy tomorrow at 1:30p. This procedure requires Sam to be anesthetized completely. He cannot eat from now until then. Another kind of lockdown. We'll see how cool he is with this one. 

Nobody gets breakfast, or lunch, no matter what shape it's in. 

We're told this is a common procedure, and he'll be ok. As parents we're of course very nervous. Not only because he'll become rabid since he can't eat for over 12 hours, but because we love him and we think this all sucks completely. 

Kathy arrives tomorrow. Ozzie will stay in C-U with his Grandma, his Auntie Debbie, and his Nashla. Samson will be here, probably, at least until middle of next week. 

If you're the praying type, fling up a prayer for swift scientific knowledge (is that possible?). We are suffering a divine affliction, and are at the mercy of human understanding. Help from both would be nice.