Day 17 - Thinning the Mucus

And... we're still here.... still going to the garden, cafeteria, the playroom. Riding the elevators... the walls are closing in. We're starting to really feel it now.

I had the weekend off, Kathy came down and spent the weekend with Sam. We are lucky to have Nana's house so close, and to have Grandma and Aunt Debbie close enough (to Champaign) to drive down from the Chicago suburbs to watch Ozzie. That worked out great, for us. (Not sure how Oz, Sue, and Deb got along. I'm sure they had a blast with the Oz-man! I miss the L-BD - Little-Big Dude.)

I came back on Sunday to hang out with Kathy and Samson. We sighed, crossed our collective fingers, and Kat drove back up to the C-U. This is gettin' old, folks.

But the word on the street is that we're getting there. On Friday we did the bronchoscopy. That was very informative, and they took a mucus sample to see what bacteria it grows (gross). They also did an X-ray. So now we have two, count-em, two new sources of information. 

The X-ray is showing that Sam's mucus plug is thinning, and getting smaller. That's good. The culture is showing that there is no pseudomonas. However there were a ton of white blood cells. Sam has been on antibiotics for two weeks. Put all that together, and that means that something is causing an infection, but it is being eradicated on the culture because of the antibiotics. The white blood cell count means his body is fighting the infection. But, since CF is a genetic disease, the DNA mutation in these cells is faulty, and creating more extra-thick, extra-sticky mucus. This mucus decreases lung function, and aggravates the infection. Thus, the vicious cycle of Cystic Fibrosis. Beee-yootiful.

So we started some new medicines this weekend, and we think they are working well. We brought out the Big Guns. The Clint Eastwood of antibiotics: Tobramycin. He's getting that once a day, and since it's so badass, they have to watch him in the hospital for a few days to make sure it isn't hurting other organs and such. It was intended to blast away the pseudomonas bacteria. We're not sure if we'll continue with Clint Eastwood, but it's sure nice havin' him around.

The other one is Pulmozyme. Pulmozyme is the Axel Foley, the Mr. Clean, the Number Two. It is inhaled. It's an enzyme, so it's designed to break down the mucus in Sam's lungs and thin it out. Pulmozyme infiltrates the enemy and weakens it. He gets this once a day as well. 

He is coughing still, but it's productive. This is good. He needs to cough up the mucus that he has, and we need to prevent more mucus from forming. That's the plan. We'll see in the next few days about what the future is for us. We're keeping our fingers crossed. No one is saying the "H" word. But we're all thinking it really loudly.

For those of you keeping score at home, here is a list of Sam's med schedule. Cefepime (antibiotic, IV) three times a day, Vest four times a day (not really a drug but it's on the schedule so whatever), Albuterol four times a day, Pulmicort twice a day, Dornase (Pulmozyme) once a day, Tobramycin once a day. Don't forget his Prevacid, ABDEK vitamins, Claritin (all once a day), and - last but not least - his Creon pancreatic enzymes (4) with every meal.

Better living through chemistry, indeed.

Kathy sent me some photos from their weekend. 

Sam and Mommy made hats in the playroom, then wore them to the cafeteria like a couple-a old ladies. The Uncrustable keeps it legit, though. Sam says his visor "keeps the sun outta my eyes, and prevents my head from getting all sweaty."

This is a Mommy's-eye-view of hanging with Sam on the garden swing, in the sun. It was a beautiful weekend.

Another helicopter sighting.

I wish I had more to report this weekend, but, well, I wasn't there. 

But my day today (Sunday) was eventful, yet short. When I arrived I could tell that Sam was really starting to be over all this. He was still playful and all, but something was a little low. I'm glad that by exchanging parents for a few days could help mix it up a little bit.

Nana sent me with some books for Sam. One was a Cars 2 comic book. Fun! Sam dug in immediately. 

And... we went to the garden. Again. This time we focused on sculpture. This one is abstract. Sam told me so.

This one isn't. It's a frog. It's tiny, about three inches tall. It's not real. I didn't lick it.

This is a view of our new "front porch." We found this chair in the hallway and decided that was our front porch chair. We have a great view of the nurses' station... and, that's about it. Sam looks like a grumpy old man here. 

Then, drama.

We went upstairs again. Sam slipped in the garden and his PICC line (his long-term IV port in his upper arm) got damaged. He started bleeding from it, and we immediately went down to see his nurse. She cleaned it and called in the PICC team (they're hardcore). They needed to re-dress his line, which is strapped down to his arm with the sticky-est tape you've ever seen. A huge piece, plus a ton of little pieces. They have to peel off all this tape, scrub it clean, and carefully re-apply a new dressing. It HURTS, mostly just from the tape. Sam has already had this changed twice, and knows what's up. He knew what was coming, and was immediately against it. He cried a lot, and I felt so bad for him. We had to hold him down. He's been through so much, and I hated that he had to be crying so hard over something so small, yet important. And I watched them peel that tape off, and it just seemed so cruel. He didn't deserve such torture. There was noone to blame, and it had to be done. He wailed for about 15 minutes while they carefully repaired the line.

It was finally over and he was ok, but sore. And still sobbing. I could sense his growing frustration, and I hated that I couldn't do anything about it. I've got no say in this matter.

A few weekends ago I went to Target and went crazy on toys for Sam. I had kept them hidden, and whipped out some surprises at times when he deserved them or we were getting bored. I had one left... I was saving it for later this week, but after the PICC line incident, I just had to. He played with the Cars Lego set for about two hours on his own. It was great - he was in his own world, far away from the hospital and everything else.

Nana visited later and had dinner with us. Sam showed her his legos in the room.

The last picture of this bloggin' blog is the best one. Kathy took this over the weekend, and it's a keeper. There is no climbing structure here for kids to play on for obvious reasons, but he still has the urge to play on stuff. It's amazing to think he hasn't been to a playground in 17 days. Amazing. Anyway, he climbs on rocks and things in the garden. It's probably frowned upon, but who cares. He's a kid, and he won't hurt anything (except his PICC line, apparently...)

Here's to hope. (clink!) We're getting close here, I can smell it. The walls are starting to close in, and I think we're all a little crazy by now. But things look promising. We remain hopeful that Sam can go play freely very soon. Otherwise, you may see him swinging from the buildings in the Central West End of St. Louis like a mini, blond, hairless King Kong, swiping at helicopters.