Hospital Day 13 - Everything is Awesome

First, medical stuff: a new pulmonologist is on rounds this week - one who we do not regularly see in clinic, but who is one of the researchers here and is very knowledgeable about CF medications and genetic research. We had a great talk about medications and treatments in the pipeline and about the meds Toe takes. Toe has his PFT (pulmonary function test) tomorrow late tomorrow afternoon and if it goes well, then we can go home (probably the next morning). Keep your fingers crossed. Toe's cough comes and goes - sounds better during breathing treatments, is juicy in-between treatments. We have been told that this is normal. I guess the sticky mucus builds up in the tiniest passageways first and breathing mostly uses the large passageways. It takes time for the medicines to clear out those tiny bronchioles. We will know more about Toe's health and when we can leave tomorrow afternoon.

A great piece of CF trivia. The only contraindication (if you're allergic you shouldn't take it) to Pulmozyme (one of Toe's breathing meds)? Chinese hamster ovaries.

Now the fun stuff:

So apparently some of the architecture offices in the area have a Lego building competition around Christmas. They then donate the pieces to Doernbecher. There was some miscommunication about whether the donation would come in pieces or built and so today a Child Life Specialist came to our room and said, "Hi Toe, you like Legos don't you?" She ended up bringing us a five gallon bucket, a three gallon bucket, and a box of Legos in various stages of construction.  She brought some instructions and photos of what everything was supposed to look like but that was not necessary for us.... but that didn't stop us. Master Builders in the house.

 She came to the right room. We were delighted with the already built stuff and started to adapt it immediately. Because, you know, sharks like to grill on the roof. Toe has been doing great imaginative play with everything and has no problem taking things apart and rebuilding them or repurposing them.

Apparently the coffee shop needed a shark to man the grill

There's actually a mechanism that turns the carousel

 There is a sweet shop, a fire engine, a working carousel, some cute shops and apartments, a jeep, and some other pieces. I am amazed by the detail - frosted donuts, an espresso machine. Many working parts.

Ours are not so fancy, but are more unique. Toe's rules are that you can build, but you can't use the instructions and your creations must not look too much like anything in the photos...

The first attempt at a hovercraft - by Dad

Working on a hovercraft

 So THEN, it was time for physical therapy. The therapist brought cars that work your arms and legs and we had races on the sky bridge. Those things can actually get going pretty fast!

Yes, I raced too. I had to fold like origami to get into the car.

A beautiful winter day

 We, of course, immediately came back to the Legos. After a while, I took a nap. When I woke up, I found:

The Christmas plane - by Dad

Late Respiratory Therapy tonight. Apparently there are a lot of patients with bronchiolitis and asthma here now.