Tuesday, August 30, 2016

The Guest House

Of course Stanford has their own hotel! The Stanford Guest House is a nice, quiet, secure 4 star hotel on campus. The guest house is located adjacent to SLAC (Stanford Linear Accelerator Laboratory) a two mile long particle accelerator (what, your alma mater doesn't have their own particle accelerator?).  Access to SLAC (and the guest house) is through a staffed security gate, so when we trade out in the wee hours of the morning Beth feels pretty safe.

We are getting tired, last night I must have slept through my alarm and woke at 4am when I was supposed to relieve Beth at midnight. She same back and slept for about four hours and was woken by vacuums banging on the door and baseboard in the hall.
 The Guest House had no vacancies for our first three days so we stayed in The Hotel Aria, which sounds nice but wasn't anything to sing about. During rounds this morning the Doctors said Gabriel will have a break from labs and x-rays tomorrow morning so no early wake up or blood draw! The down side is we are here longer so I extended our stay at The Guest House, we hope- hope-hope to be discharged this coming weekend, but we extended until the 7th just in case. Unfortunately many of you won't get to stay at The Guest House as it is for Stanford Alumni, visiting faculty, physicists, and Stanford Medical patients and families (so that is fortunately you won't visit). It's a nice place with a laundry room and outdoor courtyard and a Starbucks across the parking lot (makes Beth happy). Beth overheard two families chatting in the dining area yesterday morning, all of them alumni situating their children in their freshman year. One of the families had two children enrolled. Meanwhile we've been situating Gabriel throughout the hospital

We've been in the hospital for a week now and away from home for 10 days but it feels like months.

Last Tuesday was surgery.

Early Wednesday Gabriel was extubated and we moved from morphine to fentanyl, we now know he is allergic to morphine as he almost rubbed the end of his nose off.

Thursday we began working on constipation caused by the opiods (morphine and fentanyl) using miralax and a stool softener.

Friday we took a wagon ride and and ended up with a private room in the CVICU, did I mention The Pod was LOUD, so grateful for the room.

Saturday we moved up to what was once 3 West and is now PCU374! I'm sure some hospital administrator was heralded as mid manager, or senior VP of the year for the name change. One of my MUC's (Meritorious Unit Citations) came from the "realignment" of the Marine Corps, Infantry Training School. I was a troopleader/instructor and we received a new Commanding Officer, a full Colonel in the late 80's and he changed us from ITS (Infantry Training School) to SOI (The School of Infantry) and none of us who trained the guys could tell a difference, nor could my friends who worked in administration and made sure we all got paid, nor my friends who worked in the chowhall and fed us, nor my friends who worked at BAS (Battalion Aid Station, quick care staffed by a few Navy Corpsman and a Doctor), but we all received a pretty little ribbon and stood at attention for a couple of hours while the Colonel told us how important, critical, etc... and we all continued to do the same job. Got-a-love bureaucrats whatever outfit they wear: scrubs, dress blues, or suits.

Gabriel can lose one chest tube! The left tube (which is not), during rounds in the CVICU, (rounds are when a lot of- 8 or so- really smart Dr.s, PA's, & NP's focus on everything about each child between 9 and 11am), Dr Roth (super, awesome, fantastic, terrific, super smart, extremely nice, kind, respectful, Montana native, humble, nice, smart, nice, smart, great person) redressed (kindly) the fellow (or PA or NP or resident) who referred to the left tube as "the left tube." Dr Roth stated, "It's not a left tube, it's a mediastinal tube, he has a right chest tube and a mediastinal chest tube." We really like Dr Roth. He remembered us from 3 years ago, how cool is that? These people have hundreds of babies and families and parents a year and he remembered us. That's a special person. We like Dr Roth. I also saw Dr Gail Wright and called out, "Hello Dr Wright," (we also really like Dr Wright- she is responsible for the highest survival rate in the world of kids surviving between the Norwood and the Glenn, the national average is 85%, she has rasied Stanford's to 98% and we thought she was such an asshole because she was so intolerant of our wishes to get home after the Norwood). We thought she was so horrible because even when we implored that we needed to get back to our other kids and Beth cried and I was angry she stood up to us (I think all barely over 5 feet of her) and said something like, "I'm sorry but I don't care, my job is to advocate for the patient" and so now we love Dr Wright because she took better care of Gabriel than his parents could or maybe she forced us to do what was necessary for him. So anyways, I said, "Hello Dr Wright" and she said, "Oh, Hi Mr Swope, I saw you were coming back. I'm busy right now but I'll stop by and say hi and check on Gabriel."  WTF? I did the math one day and realized that the average Boise firefighter responds on (roughly) one automatic alarm a day and comes in contact with at least one person, the building RP (representative person) and goes on three medical calls per day and normally comes in contact with two people (the patient and a concerned other), so that is seven people per day. We work a third of the year so 120 days in a 25 year career which comes out to 21,000 people. Guys on busy engine companies see a lot more, I'm on Engine 2 so I see a few less, and guys on truck companies don't communicate with humans and just smash things. I often cannot remember the call we responded to a day later and Dr's Wright and Roth remember us three years later. WOW!

So Gabriel needs to output less than 4 ml per kilogram of body weight in 24 hours. These reservoirs hold all the blood and fluids draining from his chest cavity. Between the two he's drained 3 liters so far and the right reservoir was changed out yesterday.

Sunday our friends Russ and Cheryl (friends I've known since my Marine Corps days at Camp Pendleton in the 80's) drove down from Sacramento and brought Gabriel a remote control fire truck. It was the best therapy imaginable Gabriel lapped the floor driving his fire engine with Russ moving and hiding in front of him for Gabriel to crash into with the turck.

Monday, he wanted to drive his firetruck again but as soon as we hit the hallway he wanted back in bed and cried. A couple of hours later a elderly man stopped by and stated the preschool was open. Gabriel was all for preschool so we walked to the play area and he played hard for an hour and a half. He repeatedly moved to all fours to crawl to toys and I had to correct him and ask him to scoot on his butt so he wouldn't put weight on his chest. He played with cars, and the dollhouse, and the kitchen set, and the texture/rice table and half way back to the room he held his right underarm and said "ow" because the chest tube is chaffing the inside of his pleural cavity and he asked me to pick him up.

Gabriel loves to see the picture of "the inside of my body and all my bones." If you look closeley the two staggered lines on either side of his sternum are the platinum coils placed to occlude the rampant colaterals. The long tube which terminates at his right clavicle is the right chest tube and the mediastinal tube is a little difficult to see under his sternum.

Yesterday morning the phlebotomist tried to draw blood (and failed, which violates one of my two rules of life, the first being "Just do your job" which in the case of a phlebotomist is to draw blood. She also violated the second rule, "Don't be a douche" because she needlessly hurt a little kid because she was incapable of observing rule one, (so maybe there is just one rule?) but during her poking and jabbing Gabriel cried and said," I don't want you to take my blood, I want to keep my own blood in my body." And she said, I've never heard a kid say anything like that and I wanted to respond with, "No shit, you've never met a future Stanford alum at the age of three," but I just nodded and held his arm while she ineptly searched for a vein and finally said, "I'll have to send someone up." So I wondered if I failed both rules as a Dad's job is to advocate and love and maybe I should have stopped her a bit early but I didn't want to be disrespectful to her and call her out but who cares about her, but she is human and deserves respect but my son is hurting and who is the more important human? Neither, are they. They are both important and this life stuff is hard. Life is a journey, or a ride, or an experience or whatever cute, hip, quaint, hispterish, nice, fun term you want to call this human experience and it is all of those. And I am so happy for all of those people where it is just one of those particular verbs and everything is normal and it's "just a ride" but YOU are a tiny minority. in the first world a few of us experience the shit storm that is real humanity, in the third world 4 out of 5 children die before they reach adulthood- wrap your mind around that figure. Most of them die from disentary, malaria, and other completely curable- actually preventable maladies.

So Gabriel gets to drink awesome California tap water. He is also drinking apple juice and chocolate milk. His first order from the cafeteria was noonels (G speech) with cheese and meatballs. His second meal, breakfast was, "noonels, chocolate chip cookie, grapes, and apple juice."

Gabriel is drinking well and his appetite is great but he is still considered negative output as his body is draining more than it is taking in, which is somewhat but not totally good.

I'm probably more fluid positive as when I return to the room I find solace in beer and fortunately in California Trader Joe's sells awesome beer.

If all goes well tomorrow the chest tubes get removed and then possibly a few days later we head back to Boise.

Oh, and it looks like we are buying a house tomorrow.

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