Day 7 on Day 8

(Due to a blogger clog, I am finally publishing this blog of day 7 today, on day 8. I'm not in Freeburg Il at my mom's place with Ozzie and Mojo. Kathy is now in the bubble.)

Day 7 – it’s hip to be square.

So, I downloaded a new app for my iPhone. The Hipstamatic ’76 or something like this. It takes photos in the old-school way. So, the photos of today’s antics will be brought to you from the old country – real film, real prints, real colorfades, real dorky.

Today is my last full shift here at the CF Day Spa in a Huge Building and Stethoscopes. We won some, we lost some. That’s the theme. Boo ya.

We woke up to the clatter of an un-quiet nurse. She began her shift addressing Samson as “Decker.” Nice. She wasn’t the brightest tool, or the sharpest. But she didn’t kill us. So that’s a plus.

We woke up missing Mommy and our house.

What is missing here is a picture of Sam freaking out on the Respitory Therapist. He does NOT like to do his treatments today for some reason. He is violent. Scratching, hitting, kicking. I got my workout today holding him down. I thought it was a morning thing. It is not. 3 out of 4 today were very physical. “Child Life Services” – which is awesome here – is going to give me some suggestions for this tomorrow. Can’t wait. Woot.

That was a Loss.

We both recovered with some HUGE pancakes in the cafeteria. Sam ate like a lumberjack. Bacon was involved. I’m always happy when he eats like a CF-er. Lots of grease, salt, and fat. Blurg.

To the playroom for some Nintendo DS! Mario Kart. Then Chutes and Ladders. Don’t forget the Hot Hoops! Win!




Fun in the garden with the Hipstamatic. Not sure which of these two is a winner. Both of em, I say. Winning!




Another WIN: We were surprised to find THESE HUGE BALLOONS in our room when we got back to do treatment today. What a surprise! Thanks Kathy, Seth, and Miles Conley!



Here’s a slice o’ life picture. Sam loves to help me get ice water from the neat ice and water dispenser in the family kitchenette.



Back to the garden. Can’t get enough. We found a friend – Jacob – who is from 7E as well. Could have CF. That’s always a worry – you wanna play with kids, but you can’t play with the CF kids because they could share dangerous bacteria. So, we politely keep a distance sometimes. Not fair really – Sam just wants to play with kids. Lose.




If I had a shiny nichel for every time we got asked if Sam was Superman, I’d be five dollars richer. (you do the math) It was cute once. Sam didn’t find it funny in the least. “I’m Samson David Decker” he replies. Of course, sorry.




After another battle-royale with therapy at noon (LOSE!), he passed out. Guess dorking out until 10pm in the hospital room takes it outta you. Daddy got a disco nap too. Win?

No pics of this, but since we both slept through the lunching hour, we had a snack and played checkers. I got my ass kicked AGAIN. (win!) He is actually pretty good at that game for a 4.5 year old.  Sam had a juice box and a blueberry muffin. We then did vest and played Wii in our room – no battle royale this time. The nap pays off! Win!

We then went outside of course. One of today’s highlights was a medical helicopter landing on the STLCH roof. Helicopters are very common here, but rarely to they land on the STLCH roof – mostly it’s Barnes next door (for adults) and we can’t see them land or take off. This one was RIGHT ABOVE US. Very awesome. The theme from M*A*S*H comes to mind…



Another nutritious dinner of French fries and bacon. I took a close-up of the glory. Sam finished the bacon, most of the fries. I had cold Imo’s pizza leftovers.



A note about the Imo’s pizza leftovers: We carried the cold pizza to the garden, before we went down to the cafeteria. I set the pizza box on a rock wall in the garden. It sat there for about 20 minutes or so. Guess who lives in a garden and likes people food: yep. Ants. My cherished Imo’s leftovers were about to get engulfed in tiny ants. ...I killed them all.

I still ate the pizza. I know its gross, but it was a victory. Win, goddammit.

Nana came by with some laundry and visited for a bit. She’s been a huge help as courier and dinner guest. Thanks Mom!

Our last “hurrah” was battle royale #3 with vest therapy #4. Sam has scratches on his face from battling over the nebulizer mask. Its sad, maddening, frustrating, embarrassing, and stupid. It drains the both of us.

Mommy comes to visit tomorrow, and I’m tagging out of wrestlemania for a few rounds. She’s coming to stay the weekend with our buddy Samson. I hope it’s a pick-me-up for both of us. Looking forward to seeing Ozzie and Mojo too.

Medical: Sam is coughing more today. I’m told this is ok; he is trying to expel the junk that remains in his little lungs. His sputum (mmm…. Sputum!) culture is growing “normal oral flora” (say that a bunch o’ times) which means he’ll need no further antibiotics or anything. We’re just staying here as long as we can. Thereafter we’ll probably keep Sam in Freeburg with me for the rest of the week, so Ozzie (who is also battling a CF style cold) doesn’t get Sam sick again for the time being. Apparently it’s a juggling act.

Tomorrow: PICC line service, Mommy clocks in, I’m on the Oz-shift.

Something cheesy about CF and winners and losers could be inserted here. But I just really like this picture of Sam and I from our favorite place to hang. Hipstamatic!