Monday, September 5, 2016

Leaving on a jet plane

 Beth is.

We've been here over two weeks now and Gabriel is stable and doing great but just needs to finish draining. Our other two kids at home have been doing great but they need to see Mom and she needs to see them. So I dropped Beth at the Palo Alto train station and she caught a train to San Jose, a bus to the airport, and will arrive in Boise tonight.

Beth waiting for the Southbound 426

I checked out of The Guest House, said goodbye to the beautiful custom coffee machine (makes espresso, cappuccinos, lattes, coffee),  drove out the SLAC gate, and changed my residence to the sleeping couch in room 3766 at Lucile Packard Children's Hospital.

 Gabriel gets stronger everyday opening and closing the Preschool and the Play Center. It's a bit of a production getting him moving though. Now we only have to take his drainage canisters and oxygen. So it is only transferring his oxygen from the hospital supply connection to a portable oxygen tank and unplugging the suction tubes from his collection canisters and folding the bases of the canisters and rigging the canisters to the oxygen bottle and away we go. Easy peasy.

We can now go without the portable monitor and O2 sensor!

Our first trip was interseting, the Nurse said, "Carry the canisters and make sure to keep them below his chest level, and here is the portable monitor to carry, and the oxygen cylinder, manage the tubes and lines, and one of you needs to make sure he's stable, and remember sternal precautions so assist him with his balance only at his waist. Do you need any help?"

"Uh, yeah," I replied. I wanted to say, "You just gave us a task that requires a 5 person team to complete and there are three of us to address it," but I kept my mouth shut and I walked hunched over to keep the containers low enough, while holding the portable monitor and oxygen bottle in the other hand. The nurse managed the tubes.  Beth walked hunched over with her hands at Gabriel's waist to catch him if he fell.

So we returned to the room and I removed the strap from my computer bag and rigged the containers to the O2 cylinder and dumped the monitor in the small bag we carry our Kindle in and hung that on the O2 cylinder.

Voila! I can walk in front of or behind the boy and manage the hoses and hold the O2 cart handle with one hand while holding Gabriel's hand with the other! I've also tidied things up even better so the containers are more secure and don't shift when we move.

Several Nurses have called me McGyver (I personally do prefer the cork screwed Swiss Army knife to the Leatherman) and one asked if I was an engineer. I mentioned I was a firefighter and she said, "Oh, that makes sense."

Lapping the halls on a scooter.

The nurses work 12 hour shifts, day shift is from 7:30am to 7:30pm and the night shift is the other 12 hour period. So the 24 hours of drainage are measured from am to am. At shift change tonight we are at 30ml!
We will have to see what occurs through the night. I hope he dries up tonight! He has to be under 4ml/kilo, that number was about 60ml when he weighed 14 kg but has dropped a bit because he has lost some weight and is now at 13.6 kilos.

During my late night shifts I've had time to search Craigslist in Boise for building materials (I have to convert the carport to a garage to house the letterpress studio) I and search the local Craigslists here for any potential letterpress paraphernalia. I found a letterpress galley cabinet with galley trays about 2 hours north in Santa Rosa! I had planned to drive up during the day this week to pick it up but by flying Beth out I lost my opportunity. I called the guy to see if he had it and mentioned that I was stuck here in Stanford with my son in the hospital. He answered, "You're the only one interested, no one else has called on it. I'll trust you and take it off Craigslist. You've got enough to worry about. Take care of your son. It'll be here when you're ready." Pretty cool what people are capable of doing for each other. His act of kindness and trust elevated my spirits. Crazy when you think of the potential world we could easily live in if we all were just a little bit nicer to each other. It's nice to start looking forward to something else (the house and letterpress studio).

And on the nice note, our support network is unbelievable, what an awesome group of people we know and love. Thank you! Tim, Scott, Randy, and Tony for covering my shifts. Scott, Rich, and Dana for moving two trailer loads of stuff today from the storage unit to the house so that Beth would not come home to an empty house! Erin for offering sky miles for Beth's ticket (we had already bought the ticket though, thanks). Chris and Shelley and Amaya and my folks for taking care of our kids, so well. And for Eric and Amaya who have both offered to fly out and drive back with me. And for our lacrosse family that has assumed my coaching duties and transporting Bella to and from practice. And all of you who have prayed and thought good things and kept us in your hearts. Thank- you.  And these wonderful people at LPCH at Stanford- WOW!

He's at 40ml at 8:30pm. No more drainage tonight is our request.

Beth just touched down in Boise.


Anonymous said...

What an amazing life little Gabriel has LIVED!!!! He is God's miracle! God bless you all..

I don't know what else you need in Boise..but I can help. Beth, even though you don't know me personally...I worked with Earl at BFD (finance support)...what do you need while Earl is gone and after they arrive home?
Karen Wooddell

transportable oxygen concentrator Surf Side said...

Gabriel is leaving an amazing life, He is a strong boy. God Bless Him. Hope you enjoyed your trip a lot.