Day 1 - Make your own fun.

So, we are now really into this hospital thing. Sam we are now getting into hospital mode. That means at night you sleep in two-hour increments. Blegh.

He gets vest and albuterol nebs every 6 hours. IV gets updated and flushed (for his antibiotics) every 4 hours. That means the IV pumps for an hour or so, beeps for a while until a nurse happens to hear it, then gets flushed, then beeps again, every 4 hours.

Sam is also on a fluid drip, so that means he's peeing constantly. This is good, but only to a point. He was up three times last night to pee. Picture the two of us fumbling around the room, he is hooked up to a pole and a web of plastic lines, and I'm winking and waving a plastic urinal around, trying not to spill it or let Sam fall off the hospital bed.

It was so nice for the attending physician to wake us up at 7am. They don't do rounds until 9. But he needed to ask us some mundane questions and poke sam's belly. We got up and assessed our situation.

Moose Patrol.

The room service here is called "moose partrol". Sam loves it. His nurses have told him to "eat, drink, and sleep" while he's here. He is definitely eating. Tots and peas are his go-to sides. Blizzards. Cheese sandwiches. Crazy peanut butter, apple, and granola roll ups. Anything. He wolfs it down. It's like the biggest loser, only backwards. It's really great.

After breakfast, we figured our day's schedule is pretty open. Sit in our room and make our own fun.

We found a small 1kg scale, and started weighing things. My phone. His phone. The hospital phone. His bear Boris. The phones at once. Boris and Sam's phone. We made a list.

The doctors told me that he is growing Rhinovirus. It is a common cold virus that we all get  (Rhino becuase it's usually a nose-related bug. get it?). Normal people get colds. CFers can potentially get out of control and land in the hospital. It can potentially let larger, more dangerous bacterial infections to grow in his bogged down lungs. Also, in CF kids, pulmonary exacerbations occur when a virus, combined with the CF part of him, create a perfect storm of mucus that causes them to lose oxygen levels, increase cough, and slow down in terms of appetite and general energy levels. That's why we're here. It looks like an exacerbation has started, and they want to squash the bacteria rebellion.

The doctor's response (their Iron Dome -- too soon?) is to give Sam two strong antibiotics via I.V. This is usually a two-week strain of drugs. Luckily, this can be started here in the bubble, and completed at home. First, however, he needs to get off oxygen. If he's oxygen dependent, he needs to be in the hospital.

Nana arrived with some great games (and some real coffee and soups from Panera bread - delish. I'm not as big a fan of the Moose Patrol as Sam is...). We feasted again on lunch and hung out in the room. Sam needed to pee again, and so I took off his oxygen tube to hit the bathroom. A half hour later, I remembered that I forgot to put it back on. Woops, but: He's doing just fine, on room air. A half hour later, I told his nurse. And just like that -- we are weaned off the oxygen. No problemo. Step one complete!

That would usually mean we can leave the room, and get a half hour of freedom to roam the hospital (Sam loved this part of his stay last year, but due to a new policy for CF kids in the hospital, they are only allowed out of the hospital rooms for a total of an hour a day. They must be off oxygen, and germ-free.). Our nurse, who is awesome, was telling us we can go out and play when we were done with our medicine drip. The drip ended, and we got all ready to pounce on the "front porch" of our room (that's what we call the little foyer for the nurses. It's almost complete with a screen door, American flag, rocking chair, and sparklers.) But, the doctor told us - wait a minute - he tested positive for Rhinovirus. Sorry! No trips to the garden for us.

Sad Sam.

But our nurse was awesome, and cheered him up (this is not easy to do. Ask his Kindergarten teacher.). We got out the dry erase markers and drew all over his room window. That was a blast.

So, we ate another huge dinner tonight. Complete with a DQ blizzard! Oh yeah.



We are still on room air, and taking our meds and doing our airway treatments. It'll be another night of interruptions, but hopefully we can get a picc line in soon, and be on our way with intravenious antibiotics for a few weeks.

Thanksgiving holiday is now a footnote to the week. It'll be interesting to see how we spend it. Our original plan last week was to go to the Chicago area and see Grandma, Aunt Debbie, and even travel by trian to downtown Chicago and visit Aunt Amy and Uncle Michael, see Michigan avenue, etc etc. Plans change, so we are flexible. Looks like it's either that turkey travels to my Mom's place in Freeburg and - IF - we are out of the bubble in time, we eat there. Or, we eat in the bubble with Sam and Boris (he weighs 400 grams). Either way I'm thankful.

My phone weighs 125 grams. Sam's is a bit lighter (it's a flip phone - and of course not in service. Not that that would affect its weight.) The hospital phone is the heaviest of all three.

Now I totally know that. Time well spent.