Day 18+ - life on the outside

We are happily on the other side of the hospital walls. Things are going great. Homemade meals, walks in the sun with the kids, we happy. Sam is not out of the woods however, and we still do Vest therapy four times a day. He should be taking meds, but unfortunately in America we deal with a for-profit health-care system. Caught in between, we do not have our meds. Granted, they are expensive, but they are to come from a "specialty" pharmacy, and must be sent via mail. I'm not sure why, two days later, we don't have them. But that's the facts. They don't lie, ya'll, they don't lie.

Our day on Monday began just like any other. Vest. Toys. Nebs. We didn't know we'd be discharged that day. But, I could smell it. I knew it was coming.

Rounds were at around 9 am, and it still wasn't finalized. The Doctors had to come to a consesus. He could take Tobramycin (Clint Eastwood) and inhaled Pulmozyme (Axel Foley) to thin the mucus. That was the plan (we still have neither. Awesome!). Just needed confirmation.

We went to the garden, hoping for the best.

Here are some photos... i forget the details.

A few more steps in the fountain by Sam.

While up in the garden, a nurses aid came and got us. Doctor Rivera wanted to "listen to Sam". I had a feeling that was code for "you outta here."

Sure enough. She gave us the OK to leave. WOOT! But that is just the beginning. Lots of hoops to jump through before we could leave.

Because Tobramycin is such a badass, it doesn't play well with others. In fact, it's so toxic that it causes hearing loss. Most CF-ers lose their higher frequencies because they take so much Tobramycin (or it's inhaled cousin, "Tobi" -- cute, no?). They gave Samson his first hearing exam before we left.

A safer alternative (I don't recall its name) was considered, but my health insurance coverage denied it. Apparently it's more expensive. (It's all about the Benjamins, don't ya know.) It took a few hours for the nurses to find out this information about the alternative meds (that it was rejected). This led to the delay in our release.

So that was frustrating. Not only were we getting the more toxic med, we also had to wait around until they decided that hearing loss was better than saving some money. We finally got our hearing exam scheduled. What a country.

Sam did great! 

One last item: getting his PICC line taken out. Another OUCH moment. He cried a bunch, but it was worth it. They pulled it at around 4pm. 

My dad's old truck had been left in the parking garage for us to take back home. My dad is not with us any longer, but I think Sam and I both felt his presence, aiding us home. Dad always wanted to feel like he was helping somehow, and he really came through for us today. Thanks pop. 

It was also fun for Sam, because he was going home in "Papaw's Truck." In the front seat! (It's an S-10, and its either the front seat or he rides home in the bed.  I know that's not ideal, but whatever. You'd do the same.

After two trips to the truck with wagon-fuls of our belongings (they accumulate over almost 2.5 weeks!) we finally got the heck outta there!

I snapped a quick picture of Sam and his friend Scout riding shotgun. on Kingshighway Blvd. (again, safety first, right?)

First stop: McDonald's!! ALL of this food got eaten. We ate for what seemed like an hour. We were both starving (Sam slept through lunch, and I didn't eat either) and happy to be stuffing our faces on the streets of St. Louis. The best Big Mac I've ever had. No doubt.

Sam and I trucked it home. 

We watched the sunset out the driver-side window.

Mommy and Ozzie made this sign on our garage door. It was the cutest thing in the world. Sam freaked out on his mommy. The neighbors came out to hug him, and wish us well. It was awesome to be home. 

 THE NEXT DAY:

I had the kids the next day, gladly, since Kat returned to work. I soaked every bit of it up. Eating lunch on the back porch:

We still have Papaw's Truck (it's official name) at our house, and the kids immediately wanted to play in and on it.

We hope to stay out of there as long as possible. But we will be back. They both get checkups down there next week.

We are all readjusting to life on the outside. I have a bigger appreciation for the little things, and I think Sam does too. I suppose that's the silver lining here. Those who have less, have more.

Day 18 - The "H" Word

I'm blogging this from my kitchen table. The last time I was here, the leaves were not yet out, I had just finished my semester at EIU, and Mason McGrath was still 3.

We made it home. It wasn't no easy task, lemme tell ya. But Samson is now in his very own room.

I have some excellent pictures from the day, but dammit, the blog-gods are not with us tonight. The uploader is not uploading, and I'm really not interested in sitting in front of my laptop for a long period of time. To be honest, I'd rather be chilling out on my back porch with my wife. I will do this post haste. But first, a very quick update. Tomorrow I will add photos, and fill in the gaps... again from my glorious, beautiful, kitchen table. Or maybe my couch...

At rounds this morning the Doctors determined that what we were doing was working, and could be done from home. Antibiotics, vest, and inhaled Pulmozyme. So, out we go. Or, "a la casa" in the words of Dr. Rivera.

Long story short, we couldn't leave until about 5pm. We waited, we waited, we did a hearing test, we waited, we napped, we filled out a form, they took out Sam's PICC line (he screamed...!), we packed up our stuff with glee. We finally took two trips out to my dad's old truck of our stuff that accumulated over the past 18 days. Then...

First stop was McDonald's on Lindell. We both had skipped lunch for a variety of reasons and we were crazy with hunger. We ate for what seemed like an hour.

Sam ate just about the entire way home. That's a three hour drive's worth of snacks.

We watched the sun set to our left from Interstate 57. It was magnificent.

Mommy had a sign that she made with Ozzie (he was in bed) taped to the garage door. Sam was exctatic to see not only Mommy, but our minivan. Our neighbors came out to say hi and offer a hug. (We've got some of the best neighbors.)

We're home.

We're not cured.

We know we'll be back.

Sam is still coughing.

We are happy to be together.

No pictures can capture how that feels.

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.

Day 15 - Three's Company

Ok, so this blog will be blogged early, since I now have reinforcements. It was a very eventful day, and I have lots of photos this time. We learned a lot, we laughed, we cried, we ate pancreas...

I'm blogging before Sam's bedtime because Kathy is here (!!) and she is playing with Sam in the playroom. And, I'm gettin' outta here and having me a cold one this evening. Yep. Doin' that.

Today was "Bronchoscopy Day". Or, B-Day. Our hero was NPO since midnight, meaning he could not eat anything solid by mouth (including his meds) from midnight to 1:30 or so. The great experiment (we've never not fed sam...) went smoothly, since Sam is superhuman and doesn't complain. The only thing he asked for the whole day was some Sour Patch Jelly Beans. Nope, sorry. Ok...

I was a sport and went NPO too. It was difficult. I did however convince a nurse or two to give a cup of their nurse coffee. It was delish.

But, even though we were NPO we still were able to travel. So up to the garden we go. Picture-taking ensued.

Sam in a rare moment of repose.

I friggin' love this one. I have a "swanko" version that is still on my phone for some reason. It's on f-book...

This one is ON THE REAL. ...STLCH represent. 

Mommy showed up around 11:30 (remember, Ozzie is at home with his Nashla and Grandma and Auntie Debbie. Thanks you guys! It takes a village.) Seeing Mommy made Sam very happy, and we cheered up enough to get silly in the room - it was the first time in over two weeks and Daddy and Mommy could hang out together in the same room without two fighting small boys. It was a relief! The above picture is called "toes" for obvious reasons.

Mommy.

This one is rediculously cute, and sums up the moment exactly.  

And so ended the happiness. The mood shifted completely when Sam went down for his bronchoscopy. He was very brave, and wasn't visibly scared until they wheeled him into the procedure room. There was gear everywhere that made scary noises. He cried a little, but the staff here is wonderful. Bubbles got blown, and after we popped a few, the anesthesia took over and he was out like a light (i've never seen this happen before, and wow, it's sudden! Just like that...) That made us sad to leave him like that, but he was in good hands. A nervous 45 minutes later (and I must admit -- I snuck some food in the meantime. Shh...) and our beeper buzzed. Sam was done! 

I took these in the recovery room. It looks worse than it really was. The oxygen is normal for kids who come out of such a thing. 

During the procedure, they took a little tube and a camera and shoved it down his throat. They went into his lungs to find out what there is to find. What did they find? Lots and lots and lots of mucus. The Doctor said there was much more than they had anticipated. He said it was like bubble gum - they would suck it up with the little tube, and it would begin to strand. (CF-ers have thick and sticky mucus. That's the heart of their lung problems.) They sucked out as much as they could. But this just means that Samson's CF right now is at a more severe level than we had anticipated. The antibiotics he has been on is not strong enough to fight what is causing the irritation in his airway. So, it keeps producing more mucus, which he can't get out normally. So, we're on more antibiotics now to try to "redouble our efforts," -- in the words of our CF Doctor this weekend. We are hoping to get him back to baseline soon with new, stronger, more badass drugs. We will know more on Monday when the mucus they collected is tested for bacteria.

It scares us to know that his CF is getting severe. But we are told that it is likely that we can shoot for getting him back to where he was in 2010. We'll just have to work harder. Again, there are two paths here. But now we know what we are up against. 

That CF. She's a bitch, ain't she?

While Sam was recovering, I ran up to the room for some stuff. I saw his shoes on the floor - he never goes anywhere without his shoes. His sad shoes deserved a picture. He's going to be alright.

Sam woke up after a few minutes, and we got him back to his bed. He did great! He woke up coughing (how appropriate) and when we got back to the room -- another surprise! An old friend of mine from grad school sent Sam a Playmobil Knights toy set in a red carrying case (thanks Jesse!) and we dove right in. We played with the little Knights in bed for a while. Sam didn't miss a beat. I said he was tough.

I am still playing around with all these cool camera options I now have at my disposal. Samson was very happy to have Mommy back for a while. You could tell it was a real pick-me-up. We took a time-out for everyone to recover from the past two hours of stress and suction.

FOOD AT LAST! Samson ate like a Survivor Castaway. A Pizza Hut Personal Pan Pizza, Cheetoes, brownies, milk, and grapes. ...And then a "Sam Dance" in the cafeteria to celebrate.

It was cathartic.

We went up to the garden. Sam was free of the IV pole (He was on it all day. If you're NPO you can't eat, so they give you fluids in a bag. The pole sucks because you can't walk on the stepping stones in the garden). We went to the garden to party. Sam took this one of Mommy and me. 

And I took these. He's sporting a new STLCH shirt I found in the gift shop while he was KO'ed. 

These two couldn't get enough of each other.

It's funny how we got some pretty bad news today, but we still found ourselves happier than we've been in weeks. There's something to be said about being together. It's stronger than you think, even when you're apart. We missed Ozzie (and Mojo) terribly, and talked about him a lot. Seeing Kathy here made me realize how much I had missed her. I can only imagine how it'll feel when all four (or five!) of us are together at one time. 

That's some strong stuff.

Day 14 - Big Whoop.

Today's events went by quickly for some reason. It wasn't a particularly eventful day. I didn't take a lot of pictures, although I should have. It was rainy here and we weren't outside much. We did a lot of eating, and that isn't very picturesque. HT even sent me an iPhone app that makes pictures cooler than usual. (thanks yo!) But I've only got a handful today.

(news from home: we found the cat!  -- yay! -- but, the minivan is busted! -- booo! -- )

...real life does not stop. Thank god the semester does.

We began the day on "isolation." Due to the nasal swab we did yesterday to test for pertussis (whooping cough) we needed to be estranged from the rest of the hospital. That means all hospital staff that enters the room must be wearing blue rubber gloves, a big yellow surgical mask, and a big yellow apron to keep his Big Evil Germs from shedding onto them and infecting the populace. It's pretty effing stupid, but they have to do what they do. This all makes life pretty surreal. We felt like the bubble got a lot smaller, and we were even on our own planet in a lot of ways. We couldn't leave. And, everyone who entered looked like they were in costume. Did someone slip something in my drink?

Sam took it all in stride. I told him, when we got up, that we couldn't go down to breakfast. Or to the playroom. Or to the garden. He was initially sad, but was fine with it. No fits. No crying. Just dealt with it.

I wasn't sure how long we would be on isolation. They told us "afternoon." That could mean anything. 

We ordered breakfast in the room. We never do this, because Sam must be on the move. Constantly. But this was new. Sam tore into some pancakes while watching some Sprout Sunny Side Up Show. His breakfast came in the shape of a pancake-moose. Fun! (I got an english muffin and an orange. It was circular... and brown.... )

We made our digs into an efficiency apartment by making "areas". This picture is on yesterday's blog. But whatever. I need material. And I got to use my fancy new app to make the colors funky. This is a picture of our living room. No shoes on in the living room, please. And the "rug" (two hospital blankets) are just flat enough to make cars roll pretty well. Ramps!

 

Child Life Services (or what I call "emergency responders for fun") immediately came down to give us things to do. I didn't contact them - they just came down. We got markers, paper, glitter flowers stickers, and all sorts of crap to make art stuff. It's his buddy Mason's birthday, so we made him a card. Sam really got into the flowers for some reason. It's all flowers. I'm cool with that...

Sam drew the flowers, with some help.

Right after we finished this card,  we were told (at about 10:30am) we were "off isolation". Big woop. No Wooping Cough. ... yay... We all knew this to be true, but they gotta do their thing. So we were now permitted to leave the room. But no more aliens would visit. Bummer.

So we immediately put down our dumb crafts and went out! First stop: playroom. Sam was promised that if he did his vest like a good boy he could make cookies with me (or mom) and Genne, the very excellent child life guru (she is really awesome with kids, and parents. she and this service are just as impressive as the doctors here. swear to god.) When we went up there, Genne dropped whatever it was she was doing and made brownies with Sam. He had a blast making them. Wasn't so into eating them though...

Anyways, onto the next issue at hand: Since he was negative on the nasal swab, we have to do a bronchoscopy. Our Doctors - big D -  tell us that he really should have responded to regular CF treatments by now - tons of vest and inhaled meds, and IV antibiotics. He isn't. It's been two weeks. He's still coughing and he still has a plug in his lower right lobe of his lung. So what is going on? Nobody really knows. The Doctors admit this. They need more information. Perhaps the origin to Sam's problem is not CF related at all. Could be a piece of food in his lung. Could be a bacteria that they didn't find in his nasal swab, throat culture, or sputum culture. 

At any rate, Sam has been sick since January 1, 2011. He is still not better. They need to find out why. The bronchoscopy will tell us a lot about how to go forward. Piece of food? They will extract. A new bacteria, like Pseudomonas aeruginosa? It would have to be treated with two different antibiotics since it's such a tough sonofabitch, and is really bad for CF-ers. 

Sam is scheduled for the bronchoscopy tomorrow at 1:30p. This procedure requires Sam to be anesthetized completely. He cannot eat from now until then. Another kind of lockdown. We'll see how cool he is with this one. 

Nobody gets breakfast, or lunch, no matter what shape it's in. 

We're told this is a common procedure, and he'll be ok. As parents we're of course very nervous. Not only because he'll become rabid since he can't eat for over 12 hours, but because we love him and we think this all sucks completely. 

Kathy arrives tomorrow. Ozzie will stay in C-U with his Grandma, his Auntie Debbie, and his Nashla. Samson will be here, probably, at least until middle of next week. 

If you're the praying type, fling up a prayer for swift scientific knowledge (is that possible?). We are suffering a divine affliction, and are at the mercy of human understanding. Help from both would be nice.

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.