Hospital Day 14 - Slight bump

 We were scheduled for PFTs today (Pulmonary Function Test) at 3:30.  We were waiting in our room, as instructed. At 3:34 our amazing nurse (who has gone to bat for us consistently) came to inform us that there had been a mix-up with transport (on the respiratory department's end) and that even though she offered to send us down there, they said there was no time. She was able to negotiate a PFT time tomorrow morning so we can still go home (if all goes well). And so we wait. Again.

We talked to one of the resident physicians about the plan for tomorrow. If Toe's PFTs are over 100 percent (his baseline is over 100 percent), they will remove the PICC line and send us home (at least that's the plan that we understand). If the PFTs are under 100 percent, they will discuss a number of options including but not limited to: continuing antibiotics for a while longer and/or prednisone. We are trying to stay positive and hope that we will go home tomorrow.

In the meantime, we had a great visit from some friends with young kids who played Legos with Toe and then we had another physical therapy session. This time the physical therapist sat on the back of the car to weigh it down and make Toe work harder. I think they both had fun.

 We were told it was very cold here today. We could see snow on the mountains. From our indoor vantage point, it looked sunny and warm. Toe even asked if we could play outside on one of the patios.

 Uncle Awesome came by this evening and stayed to play some X box games. We sent him home with a large load of stuff. We may actually fit the rest in our vehicle.

The stuff that went home with Uncle A.

After Uncle Awesome left, the room looked much less cluttered.  We had some more friends come over to play Legos this evening.

Toe is very tired today - a late breathing treatment last night, an early one this morning, no nap. We're hoping for an earlier bedtime tonight and the respiratory therapist has come so bed before nine is a possibility.

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.

Hospital Day 12 - R&R

 I ran into our pulmonologist on my way to get coffee this morning. He said "Oh good, you're up!" Since he saw me literally wake up yesterday morning, I guess I deserved that one.

We had a pretty quiet day. Breathing treatments, IV treatments, meals. J and I each got some time away from the hospital. We gave Toe a bath in the bathtub for the unit - great warm water (the shower in our room still only gets to luke warm) and even a salmon tub toy to play with. After that, he had his PICC dressing changed. Not his favorite. They pull off all of the tape, sanitize his arm, and then put on new tape. From Toe's reaction, the worst part is the sanitizing. You have raw skin and then the solution stings...It was pretty traumatic. After the dressing change and lunch I left the boys watching football and went to a friend's house to shower and take a walk. Now Jason is out for the evening.

A fantastic lunch and this guy eats the mayo straight

 When I came back, Toe was Face Timing with Uncle James figuring out Classic Cube (the Linux version of Minecraft).

Some parachute guys, another breathing treatment, a trip to the cafeteria, and a creamsicle later, we are getting ready for bed.

Hospital Day 11

 This is the smile you get when you see your best friend after almost two weeks.

Toe's very best friend, Mister J. lives about a mile from us. He has a sister a year younger and the three play together as often as we can work it into our schedules. The boys aren't in the same class this year but they do go to cub scouts together and we see their family on the way into and out of school daily. Mister J's family came to children's hospital today for a visit. It was priceless. The kids did some of Toe's "physical therapy" (playing with Nerf, super balls, and parachute men). As they were walking down the hall, Toe said, "Quick! The white tiles are LAVA!" (thanks Mr. Bill for the suggestion). We were so grateful to Mister J's parents for making the trip!

This was just a great day for visits. Besides Mister J's family, we had two other sets of visitors.  I think at one point we had eleven people in the room. We try to go for 3-4 people at a time, but we had two overlapping groups and although it was crowded, it worked out pretty well.

I'm sleeping a little later each day. I was asleep when the doctors came in for rounds this morning and had the embarrassing experience of waking up in front of our pulmonologist and two new resident physicians. I'm guessing that's not uncommon, but still....

Toe is  scheduled for blood panels on Monday and PFTs next Tuesday afternoon. Those will determine how much longer we will be here. We will do the full 14 day course of antibiotics here and then if Toe's cough is not gone, they will give him Prednisone to dry it up before we go home. My guess is that we'll be home around New Year's Day (ish?).

 After our Christmas debacle and almost two weeks here, we have determined we will need a minivan to get everything out of here. Each day when the doctors come in, they comment on how much more we have moved in. It has become a little like that nine-square game with the tiles where there is one missing and you have to shift them all around until they make a picture or the numbers are in order: during the day, stuff is on the window seat; at night, to sleep on the window seat, we move the stuff to the chair. In the morning, it all must shift again so we have chairs.

In the meantime, we continue to play on the sky bridge, hike the stairs, and try to fit in respiratory therapy, IV antibiotics, and enough meals to keep Toe's weight up. J and I don't seem to have the same issue about trying to keep our weight up. I think exercise and moderation will be prescriptions for us when we return home.

Hospital Day 10 - It's Physical Therapy!

Not your father's physical therapy

 Many of you have asked where we are staying. We get to stay in the room with Toe. There is a fold out chair and a window seat that each convert into a bed. We made the agreement early on to take turns on the fold out bed but after we had each slept on one bed once, Jason very kindly offered for me to sleep in the window bed - and the next night he offered again. I have slept in the window bed ever since. Jason is an absolute prince.

In addition to regular breathing treatments and IV antibiotics, Toe had some physical therapy to address his aching legs. The physical therapist showed us some stretches to do with him and then brought some games to keep him active during his stay. She said that his legs and range of motion look great and just to keep up with physical activity.

Good stretches

 Exercise 1 - take parachute men up the stairs to the 11th floor and drop them. Then walk down to the seventh floor to retrieve the guys. Repeat.

We were all breathing pretty hard by the end.

Exercise 2 - put a basketball hoop on the back of the bathroom door and shoot hoops.

Exercise 3 - Shoot nerf darts down the hall and retrieve them.

This is my kind of physical therapy. Toe had so much exercise, he crashed for a nap this afternoon.

When we woke up, we were visited by dear friends (some of whom brought an amazing homemade dinner!) who came with us to the sky bridge to watch Toe launch the Nerf darts. He took some real running starts.

We also had a quick visit from my mom today. So nice to see her, even for a few minutes. So nice to see everyone! The visits have been one of my favorite parts of our stay. We are all tired but in great spirits and very happy to be together.

Hospital Day 9 Merry Christmas!

 Merry Christmas! Toe announced today that this may be his best Christmas EVER. Gotta love the hospital. We had one of our favorite nurses today, one of our favorite respiratory therapists, and one of our favorite doctors. Toe met some new people and played with friends and family. He even got to MEET Santa.

This was the best family photo we could get--- note my cute pajamas.

Unwrapping presents

 So apparently after Santa has delivered presents around the world, the next morning he delivers presents to children's hospitals. We knew he was coming. Toe was excited and wanted to tell Santa a joke from his new joke book.

Preparing jokes for Santa

 However, when Santa arrived, Toe was rendered speechless. Santa told Toe that he couldn't come in (because of contact precautions), but he wanted to wish Toe a Merry Christmas. The whole time Santa talked, Toe was silent. He gave a very quiet "Thank you" and "Merry Christmas" at the end. It was pretty wonderful.

I must say, Santa delivered more presents here than he does when we are at home, but he sure knew what Toe liked.

Meeting Santa

 I have to say, the coordinators (and especially the Child Life Specialist - the same one who sat with Toe during his PICC insertion on day 1) do an amazing job for Christmas. They coordinate Santa's visit and then made sure to deliver us some food from the hospital-wide brunch that we couldn't attend because of contact precautions. We ate brunch in our room and I must say, the company was pretty amazing.

Our doctor visit was pretty short today. Our doctor is putting Toe on iron - he's a little low - to see if that will help his leg aches. I think they are also sending a physical therapist tomorrow to help Toe with some stretches. We made sure to exercise him a bunch today.

A quick medical exam did not impede Lego play

 We spent a large portion of the day building:

Vanity drawer? NO! Lego Drawer.

 Then we had a succession of visits from wonderful friends. Toe played hot potato with one of our visitors, the respiratory therapist, one of the resident doctors, and his parents. We did hangman and Mad Libs. Uncle Awesome arrived just as our second set of friends arrived with their kids. We took the kids to the sky bridge and played with super balls. Then we walked to the tram entrance and walked out on the balcony. Such a view!!

Uncle Awesome on the veranda

Toe's set up for going out of his room: hat and mask

The view from here is pretty great

 After our friends left, Toe had his afternoon IV antibiotics and respiratory therapy and we had some relaxing time with Awesome before he left for home. The evening respiratory therapist brought origami and is making Toe a butterfly as we speak.

We had such a great time together as a family and with our friends and we SO appreciated all of the people who gave up time with their families to come take care of us today. We hope you had a wonderful day with loved ones and laughter.

Hospital Day 8 (yesterday was actually 7 and I put 6)

Tree in the cafeteria

PFTs (pulmonary function tests) went well today. Toe's lung function has improved, although it has not gotten back to the level of the results from September.  We're going to probably be here another week. They didn't tell us this, but they did tell us we're scheduled for another PFT next Wednesday, which leads me to believe we're here for a while.

Toe is showing some signs of cabin fever so we got out and walked a bunch today. I think we stretched our limits as the nurse assistant had to come back three times to finally get Toe's vitals. We went on another Christmas tree hunt - we're up to 43 now. We are hoping we might make it to 50. We'll see.

Four more in the VA lobby

The rotating doors were the big hit here

 We also spent quite a bit of time walking/ playing on the skybridge. Not sure if that's the official name, but that's what we call it. It has beautiful views, is a long, straight walkway, and is an awesome place to play with a super ball. We had suspicions before, but this afternoon (once most of the people left the building) we confirmed it.

Skybridge- perfect for superball bouncing

 Here's a view of the skybridge form the hospital:

view from the skybridge

 We also walked out to see the Tram today. That is one drop there!

Checking out the tram

We have been told that Santa delivers presents personally here on Christmas morning, so we have an exciting day ahead of us. Tonight we will try to get Toe a bath in a tub nearby (to see if the water is any warmer there).

To all of you , wherever you are, whatever you celebrate, Merry Christmas (and happy Chanukah!). Please cherish your family time, as will we.