Look Ma! No Tubes!

Yep. The other tube just got removed! 

1 chest tube out!

Things are drying up! Henry's right chest tube just came out. Woo! It's totally possible if things look good on the left tomorrow, it could come out too. If you're happy and you know it, clap your hands!

18 days post-op

We're not winning any land speed records here. We're probably right in the middle of the pack actually. The chest tubes are still in and we're still waiting for them to stop draining enough to take them out. I feel like it's getting closer and people are starting to mention the possibility of them coming out depending on how things go. Today was low output and we just need more like today to show that it is consistently low and not a fluke or accumulating. I don't really have a whole lot to say except that I'm ready to be done. Come on Henry, let's wrap it up and get out of here!

On the plus side, he seems in pretty good moods these days. He gets around well but gets tired out. There's a tricycle from physical therapy that he loves to ride. He's getting pretty good at cut the rope. We've exhausted the good movies from the Child Life room. Tuna sandwiches are his favorite of the low fat choices from the hospital.

We got outside in the beautiful weather today!

Almost back to regular, but more waiting

I'd say that Henry's behavior is almost back to normal. He definitely still has some discomfort which he's just on Tylenol for. He skipped a nap today. I think that's a great sign that he's getting enough rest and nourishment. He's still draining through his chest tubes but it is decreasing nicely. He's under 100mL today. He needs to have under about 30 from each tube for 3 days before they will take them out. So, we're getting closer but there's still more waiting.

On the plus side, he's happy most of the day, except mornings. He's been eating great even though he's on a pretty low fat diet (we make it tasty and fun). And he's been so happy to have his brother and sister here to play with. Nothing like breaking up the day of being stuck in the same room all day!

He got a tricycle from physical therapy and rides it around the hospital getting oohs from all the nurses.
He's been blowing bubbles in the play room, doing art, and playing games. He even got to sit in a crazy race car that was here today. Pics or it didn't happen!

Lap 2 of the Henry 500

Lydia and Liam love bubbles too

BUBBLES!

Painting with nurse Kelli

Candy Land was a hit

We discovered the bed goes way up high so had to take a picture on it

Go speed!

Painting a wooden car. 1 for Liam, 1 for himself. "Golden" his favorite color.

The cool kids are eating Pez

And then there's the afternoons

So as boring, cranky, and stressful as the mornings are, the afternoons are generally the opposite.
So happy and playful. We snack, talk, try to get walking and hopefully get to the play room.  Here's what happened yesterday at playtime.

Long days are long

Long days indeed! Seems like every day is a bit of a pattern. Wake up at 6 for an Xray (yes every morning). Radiation fears are for pansies! A nice wheelchair ride, and two pictures later we check his weight, take medicine and settle in to a mope-tastic funk. He's tired, cranky, and totally over being stuck in the hospital with chest tubes waiting for them to stop draining. It's a whiny land that tries everyone's patience. Then there's a nap. A gloriously quiet time. Sometimes I wish we could just sleep for another week and then we'll be done with this place. We would magically awake right at the moment when we're all done, hop in the car and drive home.

Whew. Shake it off! Eventually night will come and we'll all get a mildly restful sleep and do it all over again.

The whole family in one tiny room

Sunday evening the L's, as I call them, got to Seattle. Lydia and Liam drove over with Linda to Spokane and spent the night in a hotel (which they loved). Then Bob and Donna flew to Spokane and finished the drive with them to Seattle.  It was so good for the kids to see each other. Here's one great moment that happened when they visited.

Comments were hard

Sorry everyone, the comment system was kinda hard. I made it easier to comment if you feel the need. We'd love to hear from you!

What a difference a day makes

Ok, so some details from the last 24 hours...

24 hours ago we were in the Intensive Care Unit with a kid zonked on narcotics and moving to the floor and feeling very uncertain. The night went very well thanks to nurse Carla giving us a decent night of sleep and taking care of Henry so nicely. Henry started his day at about 6AM, like he will nearly every day on the floor, by loading up in a wheel chair and heading to get a chest X-ray. At this point he had eaten maybe half a fig newton and had some sips of water in the last 36 hours. After his imaging he refused to get out of the wheel chair and spent most of the day whining, sitting and sleeping in it. He was quite grumpy. I would be too without food, having to go to the bathroom, super tired and sore.  We were all feeling like this could be a very long stay if this was how it was going to be.

Then, to the rescue, Karen and my Mom and Dad showed up with Thai food. The adults all ate and were feeling better, but Henry was not feeling it. Then just as they were leaving he said his first non whine words of he day... "I want a potsticker!" He proceeded to eat 4 potstickers! His appetite had finally kicked back in. Then he ate lots of other things too. Some sips of chocolate milk, some apple sliced, chicken fingers, a cookie, goldfish crackers, and probably things I don't even remember. He was a hungry caterpillar. He managed to get to the bathroom and go, and stand up and take even take a step. And he got happy! So happy!

That moment that I've been waiting for happened. We played games and laughed. We listened to music. We went for a roll in the wheelchair. It is fantastic to have my happy Henry back. 

There's that smile!

Of waffles and naps

Last night we moved out of the ICU to the floor. The scary scary floor. We voiced our concerns about moving so quick and how we've had bad experiences before. They really prepped the overnight nurse and even scored us a single room. We actually got a decent sleep thanks to Carla our nurse.

Henry slept most of yesterday and today he's more awake. He took a few bites of waffles with lots of syrup and promptly fell asleep in my hand. Now I'm blogging one handed whole holding up Henry's head. Good times.

Sleepless in Seattle

Everyone was up most of the night last night. It was not an easy night. We all finally got some rest after about 4:30. Henry is still sleeping mostly. He got some things taken off of him and he seems more comfortable. I can't wait to have my happy boy back.

Recovery mode

Well, we're settled in to the ICU. Henry is still very sleepy and out of it. He looks pretty good for what he's been through.

Were getting the futon bed set up so we can "sleep" here tonight. Tomorrow we might be able to move out of ICU. Fingers crossed?

Update: he's awake and alert and starting to keep some water down. He's really hoping to get a Popsicle soon and I think that's not far off. A couple people seem impressed with his first day progress. I know I am!

"As uneventful as it could be"

Henry is done and doing fine! We just spoke with the surgeon and the title is what he said. Totally straight forward. 96% oxygenation. What a relief! We can go see him in about another 30 minutes.

We sent Henry back

He's off to the OR to pick his flavor of gas to put him to sleep. I'm sure he's going to do great.

Update: He's off bypass and almost done. We will meet with the surgeon in about 30 minutes to hear the details of the surgery.

The alarm is set for 5:15AM

Tomorrow we rise and shine, scrub Henry down with Chlorhexidine wash to disenfect and ride off into the sunrise to the hospital. It sure sounds romantic, right?

He'll get checked in at 6:15 and should go back to the operating room about 7:30. Then we'll be magically wisked away for 4 lovely hours of anxious waiting. Afterwards we'll be reunited with our, previously unharmed child now stitched up after being quite incised. Is that even a word?

I know that after this is all over he'll have more energy and will be set for many years... so that's awesome... but right now, it's pretty hard to bring your smiling, happy, little guy in to go through all this.

I'll leave you with a few pictures from today.

Reading a new dinosaur book!

Facetime with sister Lydia. Looks important.

We have arrived in a new town

Whatever it takes

Let it be noted that the day before surgery.... You kinda get whatever you want to eat.

There and back again

It's been a long long time since I last posted. It's been nice. Henry has been doing great living the life of a mostly normal kid besides getting tired out a bit when running around and playing.

Now we're back in Seattle for his 3rd heart surgery. This one will conclude his 3 part plan to fix him up. After this he should have better oxygenation, more energy, grow better, and not get as tired out. All of things are great but there's still the matter of getting it done.

Today we're going in for pre-op and tomorrow is the big day.