Day 12 and 13 - Lockdown: Bingo!

Ok - I took a few days off from being a blogger. Things just weren't very interesting here at STLCH. Sam was getting his therapy and his meds. We are making the most of it. But it wasn't until today that we got some interesting news.

We were planning on getting out on Friday morning. All the pieces were in place. His antibiotics were done on Thursday at midnight, and after the doctors met with us on Friday morning we could go. We were all looking forward to this. Only trouble was that Sam wasn't really much better than before. His cough is still obnoxious, and chronic. 

Today, we (and by "we" I mean Dr. Rivera - his pulmonologist - and her "little d" doctors - student doctors who are usually shorter or skinnier than real, "big D" Doctors), decided to take another x-ray of his lungs to see if his mucus plug was getting smaller. We all agreed (heads nodding) that he should be progressing a bit more than he is by now. He's done therapy four times a day, with inhaled medicine, plus intravenous antibiotics three times a day, for almost two full weeks. That's a lot.

X-ray showed that the plug was smaller, but still very much there. Our new plan does NOT involve a Friday discharge. Our new plan consists of two things: 1) A nasal swab and 2) a bronchoscopy procedure. (I have no idea if I'm spelling "bronchoscopy" or "swab" correctly. Or Pulmonologist either for that matter!) They already did #1. That left sam crying with a bloody nose. Its purpose is to find out if he has contracted whooping cough. 

#1 is also evil because it put us on "isolation." We cannot leave our room until further notice. Further notice is probably tomorrow afternoon. This sucks. We are trapped in our room. Really.

#2 will happen if #1 is negative, which is very likely. A bronchoscopy is a procedure (scheduled for Friday morning) where they put you under, and then take a tiny camera, insert it down your throat, and take pictures of your airway and lungs. They can also get a sample of the bacterium that is in there. Then they can get a better idea of what antibiotic to give him.

This is quite a turn of events, considering that Sam's mother went to the store to get things to make his favorite meal for Friday night. Sam and I haven't been home since May 6. 

However, we are goddam determined to leave this hospital in a state that is an improvement upon where we began. We've all put in two full weeks here, and I'm not doing it for my health (ha... that's not a funny pun whatsoever...). I want results. I feel pretty frustrated that we may have wasted two weeks here taking Cefepime. But I know that's not the case - we needed to do this to get to this point. One things leads to another. 

Sigh. Pictures.

Some of these got up on facebook. I wasn't sure if I needed to blog anymore cuz there wasn't any real news. I didn't want to be a FoxBlogger and make some crap up. Anyway, these are from the past three days.

This is a view of the bubble. Sam took this with my phone. It's an iPhone, thank god, that not only makes phone calls, but it also take pictures, and entertain a 4 year old (and a 36 year old!)

This is a Jenga Stonehenge. (I don't think I really need to say more about this picture.)

Some POSITIVES! and yes, there are some. I must accentuate them. 

We sometimes get the best surprises. Our buddy Mason McGrath, Maso Queso, Guitar Hero Movie Guy, sent Sam a FireTruck Toy! It's Loud! Alright! It was a real pick-me-up. Thanks, McGraths!

Sam is so familiar with the nursing staff here that he just goes behind the counter and hangs out. They don't care at all, and at this point, neither do I. Sharla is a tech here, and she's pretty awesome. She's helping Sam learn the ropes at the desk. 

These are from yesterday. Nana visited again to load us up with Skittles, gummie bears and teddy grahams (and be laundry courier again! thanks!). She also got some some small toys that he totally dug. The Slinky Jr. was a big hit. He likes the box too. He keeps it in the box when he's not using it.

This is from this morning, day 13. He's such a trooper, he hardly ever complains, and is TOUGH. He happens to be wearing his "tough guy" shirt in this picture. If it wasn't for the bacon hanging from his bottom lip, this would be a real awesome pic. It is anyway. 

Everyone needs to admire the balls on this kid. Seriously. He's outdoing me at this point. I bitch and moan, but he just keeps on having fun. Except for when people are trying to screw with him. 

Like here. This is a picture of Sam yawning while doing an ultrasound of his liver. We took a wheelchair ride to Barnes next door and did this, on an empty stomach, at 3pm, today. HARDCORE. He only whimpered a little. He called it a "sonic--gram" because he's into Sonic the Hedgehog on my phone.

These are our last pictures before lockdown. The staff here grew a "butterfly garden" and they were ready for release today. Sam, with a little coaxing, let one crawl on his finger. 

We also saw some Bumble Bees and some Honey Bees up in the garden today. I advised him not to try to put one on his finger.

 Then we went inside and played Bingo! again. He won, of course, twice. The second prize was the best: a Hot Wheels Ramp Thing With A Snake And A Ramp And Launcher!!!!

When we got back from Bingo, and our "sonic--gram", we were told of our new fate. Isolation. I made a "living room" carpet area so we could play on the floor with our new toys. 

Samson David Decker is keeping me going here. He is stronger than I am. I say that a lot, but I mean it. Everyone on our floor knows him. He hasn't been home in two weeks. And he won't be home in two days. But he's ok with that. I ask him, and he says "yeah, that's ok. I need to get the coughs out."

I took this picture in the garden when we were there to see last night's sunset. They are spectacular. Lockdown sucks, but it's not forever. CF is forever. So, we see all the sunsets we can possibly get. If you know Samson, you know that deep down he knows and understands this equation.