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.

Saturday, September 3, 2016

Pursuing discharge

Man this place will humble you. We knew September was an outside possibility but we "knew" we would be out of here and probably home by September, Gabriel is always so strong and defies any cardiac kid stereotypes. His chest tube discharge volume needs to be less than 60ml in 24 hours, as of Tuesday his output was down to 80ml, we knew he would meet the goal Wednesday and the tubes would be pulled Thursday. But instead Wednesday it was 100ml, Thursday 120ml, Friday he is over 100ml. I think we forget sometimes that he has a severe congenital heart defect, even though he has the big chest scar, because he plays hard and can do monkey bars and jumps and leaps, but he is a kid with half a heart and his body responds accordingly. Sometimes things are just beyond your control but that is hard to accept as an American, we "just do it" or 'create our own paths' or 'make our own destiny'. Sometimes though there is nothing to do but wait, somethings are outside of any control, the caregivers here also. They are also waiting for the drainage to reduce.

This place will make you grateful. Gabriel's roommate underwent the Fontan two days after Gabriel, he left the CVICU a day earlier than us, and was discharged only a couple of days later. He never walked or got out of bed or exercised and had three chest tubes. We have walked Gabriel at least daily and sometimes several times a day and are here for a while longer and would not change places, the other boy deserved to leave earlier he deserved one little break. Beth spoke to his Mom and discovered they were from Southern Cal but were up here because the boy developed complications after his Glenn procedure (about 6 mo. of age). He was diagnosed as inoperably terminal, no one would touch him except Dr Hanley, of course, who revisited the boy's Glenn and just completed his Fontan and spoke to his Mom of potential cardiac developments occurring in the next twenty years. I look at Gabriel with his tubes trailing behind him when we walk and I hear the cries of these kids at night and I think of their opportunity at life. Some of whom like the roommate exist no where else and at times I think of Dr Moreau. The discharged roommate also suffered from autism, developmental delays, and other cardiac issues. We are so fortunate Gabriel only has the one issue. Perspective is so relative to experience and exposure. Within hours of his discharge the roommate was replaced with a middle school aged boy with a cardiac condition unknown to us but with probable developmental conditions as evidenced by his speech, cognition, and physical posturing.  His Grandmother spent a few hours with him and left, we've only seen her two other times in the last 72 plus hours. His first night was rough, he was alone in his bed and several times throughout the night he whimpered "Mama." I had to page his nurse several times, the first was after he said he had to pee and the second was after he howled in pain for about ten minutes. The hospital provides a sleeping bench and a recliner but two hours is the most I've managed to get on any one night and I don't think Beth has come close to my numbers. The next evening the charge nurse for the ward  provided a sitter to spend the night with the boy. I thought the concept was grand not only for the boy but also for Gabriel and I. I hadn't' considered  conversations between the sitter and the nurse though, which punctuated the night for hours. A short time after the conversations subsided and I had started to doze the boy adamantly stated, "I need to poop" and a noisy hour was required to resolve the issue. I started to finally doze off again and the boy spent about twenty minutes stating "my finger hurts." Again perspective hit, and I thought of how smart and aware Gabriel was and how tiring all of this is and thought of this as a lesson in gratefulness and patience. By the way God, I have never, ever, envied Job, just to be clear, sir.

Dr Hanley speaks to the parents after surgery and told us that the average stay post surgery is 11 days. Today (Friday the 2nd) is post-op day 10, maybe Dr Hanley is so experienced he evaluated Gabriel during the surgery and thought, "Yep, average healing time, 11 day body." Dr Hanley if not THE most experienced surgeon in the world at this procedure is one of the top 5, we should have listened to his eleven day pronouncement. It made me think of my knowledge of structure fires and  I know what a problematic rekindle looks like and after we've gained fire control I know the ones which we need to spend extra time on overhaul so the fire does not rekindle. I remember as a hoseman spending hours in attics mucking out sterile looking cellulose insulation and cursing the Captain making me dig all of this stuff out that "was just fine" and 6 feet from the last spark finding another hotspot and thinking "I guess the old guy does know what he's talking about." This discharge timetable is made more elusive and directly increased some of our frustration due to varied information we've received. When we were initially scheduled we were told 5-7 days post-op for discharge, similar to the Glenn. When we met with Dr Hanley he stated this procedure was much more difficult for the body to resolve and stated 11 days. Dr Roth told us the average time was 13 days. Today a Nurse Practitioner told me that it was not uncommon for Fontan patients to spend 2-3 weeks post-op. We're grateful we're here and keeping chasing that date but want Gabriel solid before we leave.

This place will make you tired. I don't know if I'm hyper sensitive tonight or acutely aware or hyper-acutely sensitive but the alarms and tones on the machines seems especially loud. Gabriel and his roommate are both hooked to pulse oximeters to measure their breathing and an EKG that measures their heart rate, and one of them tones an alarm at least every 20-30 minutes because their oxygen saturation, or heart rate, or respiratory rate slightly dips below the physician desired parameters programmed into the machines. Gabriel sleeps through most of it but his sleep often appears as not very restful, I wonder if these kids ever hit REM while they are in the hospital?

The house closed today, Beth and Bella are happy we are no longer "homeless."