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.