Day 2 - Switcheroo.

Day 2 began much like Day 1. It was a crappy night of shadowy, masked figures coming into the room and starting meds, vest treatments, nebulizers, and using the computer kiosk. Beeps. Doors. It's like Skylab. Or something like that.

The plan today was to get a picc line put in so we can work on going home. The picc line is a very small tube that goes into the patient's vein. It's like an I.V., but it's more permanent. The tube is thinner, and much longer. It snakes through your vein and ends up in one of your larger veins near your heart (not too close, but close enough). Putting one in requires twilight anesthesia. Twilight anesthesia requires going without food for 8 hours or so. That means no breakfast from Moose Patrol until we are doing getting this procedure done.

So we waited for them to call our number, as it were. Before we go down to get the procedure, a team of what I call "vein hunters" comes by, looks at his arms, and marks a place on his arm they will use to put in the picc. I was told they'd be by around 7:30. The vein hunters never showed. By rounds at 9, they were "looking into the delay". By 10:30 we were starving. The nurse poked her head into the room (afraid to enter completely - we were drooling) and said we had been delayed. Tomorrow morning instead.

We ordered breakfast immediately. Then we asked why.

They wanted Sam off oxygen for a full day before they did the procedure. Fair enough. Why didn't they tell us? Or our doctors and nurses? Its only polite. Whatever. It's the Bubble.

After the feast, we got a nice surprise. Balloons from Aunt Amy and Uncle Michael. Awesome.


So we ate and ate. Then we played some of our hospital room games. Wii. Etc. We are still planning on trying to bust out of here once our picc line is eventually installed. We are hoping for tomorrow. Until then, we play in the bubble, and do our treatments. And nap. (Sam woke up after an hour nap - "is it still Tuesday?")
Mommy arrived!


She is done with her week of work, and came down with Ozzie. Ozzie also had some business to take care of here at the Hospital. His CF was acting up a bit, and he needed to come get a throat swab in the clinic. No hospitalization required. So he came with Kathy. After his swab in the clinic, they came upstairs. Ozzie isn't allowed in the room with Sam (CF kids aren't allowed to be in the same hospital room - as a side note, CF kids never have to share a room in the hospital with anyone else. Always get singles. A perk? I suppose.).

So, we got to switch! Kathy hung out with Sam in the room for a few hours. I got to hang out with my man Ozzie in the rooftop garden! What a nice change of pace. We ran around the paths, looked at stuff, jumped, ran some more. We saw the sunset. We also saw two (2!) helicopters take off and land on top of the hospital. I thought that was awesome. He kinda did too. He's Sonic.



I took a lot of photos of him. I missed the Oz-man.


The rooftop garden has an awesome view of Forest Park. There is already an open-air ice rink installed for the winter months. We could see skaters on the rink as the sun set in the south-west.



We found these hats. They were donated for patients and families - someone must have crocheted them (sp?). They're nice. We picked out one for mommy too. (no pictures tho...)

Back at the room, we switched back. Kathy had brough a bunch of goodies from home. The best of all were a huge envelope of cards from his Kindergarten class at Robeson Elementary. Not just from his class of 23, but from ALL THREE classes of 23 at Robeson! Wow!

It was touching. Sam read EVERY ONE of them, and got particularly excited when he found one from someone he really knew, or from his teachers. We also got more cookies, and some other things to pass the time. People. Are. Awesome. It's true.

Pretty soon, it was time again for the Moose Patrol. This time: Pizza. Fries AND Tots. Ice cream. All for Sam. A perfect place for a CFer - lots of fatty, crappy, foods to eat. He is making the most of it.

BONUS: After being promised trips to the outside to no avail, he finally broke out - Jeff, a very nice tech, took Sam on a 15 minute whirlwind tour of the hospital while I made some phone calls. How nice of him - it was like ditching school. they had to wait until Dr. Patel left for the day. ..."breakin' the law, breakin' the law..."

Anyway, it's actually a really good sign that he wants to eat a lot. When CF kids get sick and have exacerbations, they loose their appetite. Drs look for these kinds of signs.

He still has one helluva cough. (nurses, techs, and doctors alike cringe at his coughs. they're loud and mighty) But we are reassured by his mood, his appetite, his energy, and his ability to breathe on room air. His doctors are trying their best to get us out by Thanksgiving. We know better than to put all our faith in that. It's the Bubble, after all. Anything could happen.

Right now, it all depends on the picc line getting in, and seeing how he recovers from the procedure. If he avoids more oxygen, then we may be looking pretty good. Then again, he's still quite sick, and that procedure may take enough out of him to keep him here a while longer.

We are still assured that this is a different problem than May of 2011. His lungs sound clear - they're moving lots of air. Last year, he had a "plug" of mucus that had to be extracted manually. This time, noone has seen this issue in x-rays, or heard by stethoscope. He also has no fevers, etc. But that cough remains. Speak of the devil, he just fired a few bad-boys off just now in his bed. 

I raise a virutal beer to Sam during all this. He only lost his marbles once so far. We haven't been here very long, it's true, but he's doing the best he can.

Mmmm... beer. Moose Patrol, I'd like a Southern Tier draft please. Better send up two. I have a voucher.