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.

1 liter per minute

Last night about 4am they removed Gabriel's breathing tube, extubation of the endotracheal tube (ET) in medical parlance.

 

 

Intubated in the CVICU.

Nice words to read on the screen after they pulled his tube. Cathy was his nurse throughout the night and did a great job managing his pain and discomfort and filling the orders for FFP (fresh frozen plasma) and platlets to help Gabriel clot. The Fontan causes significant trauma and therefore drainage into the chest cavity due to the scar tissue from the previous two surgeries. The CVICU team was able to get the drainage to an acceptable output so they could pull the tube. The fear had been that there was excessive oozing inside the chest and they did not want to pull the tube if they thought they had to go back inside. Thank you to our support network, your prayers and positive thoughts have buoyed us and helped Gabriel clot. His chest tubes are still draining but at a completely acceptable quantity.

Extubated and breathing 1 liter per minute of oxygen.

Mommy and Gabriel in the morning.

We had a special treat getting to see Isaac last night, one of his Norwood Nurses who remembered Gabriel as "The first kid that ever pulled a line out on me, he pulled out his RA lines with his foot," and commented on how big he was (Isaac also mentioned the line was pulled while he was on break). We also saw Manju who was such a wonderful advocate and caregiver to Gabriel after his Glenn procedure, it was a treat to talk to her as she covered Cathy's break time. These are such special people. This morning Melanie took over and has so far removed the central line from his jugular vein, the foley catheter (for pee), the rectal thermometer, and has decreased his meds to morphine as needed and tylenol. Melanie commented on how well Gabriel did with the removal of his central line and said it was probably the easiest she has ever seen it removed. There is talk of us moving to Three West (the cardiac convalescent ward) tomorrow!

Fontan

We checked in at the surgery center this morning at 6am. We've been through this drill a few times before. Verification of insurance and due to Gabriel's condition Idaho medicaid. Issuance of identity bracelets and taking him back the OR prep area. We met the anesthesiology team, one of whom remembered Gabriel from an earlier procedure and she trained and practices in New Mexico but was doing a residency here three years ago and just came back to complete a fellowship. It's reassuring to see some familiar faces. The child life specialist helped Gabriel decorate his anesthesia mask with truck stickers and rubbed watermelon and strawberry scent on the inside of the mask. Gabriel wanted both, she called him a little scientist mixing the flavors together, big brother Powell would be proud. They gave Gabriel an oral sedative which they call "happy juice" and as it started kicking in we hugged and kissed him and said goodbye.

Waiting to go, watching Mommy's phone.

We checked into the OR waiting room and were greeted by the friendly smile of Maira, she had worked at the front admissions counter during our last procedures and remembered us! She has the biggest smile and was and is always cheerful and wanting to do whatever she can to improve things for the parents and the patients, just the perfect person for the position she is in, but it seems Stanford has many of these people.

Just after eleven Dr Hanley stopped by to see us and introduce himself. Gabriel's previous surgeon, Dr Reddy returned to UCSF and left us with a choice. Do we follow Gabriel's amazing surgeon to a new hospital or do we stay at an amazing hospital and go with another surgeon? Fortunately Dr Hanley is on par with Dr Reddy as one of the top surgeons in the world conducting surgeries on what many other surgeons consider inoperable cardiac kids. 

Dr Hanley told us Gabriel was prepped and they were almost ready for him (Dr Hanley) and assured us they would take good care of him. He would try not to use the heart and lung machine, but it was there if necessary and he preferred to act conservatively and use it if need be even though recovery time would be extended. I told him we knew Gabriel was in the best hands and Beth asked if she could give him a hug and they hugged.

So about five and a half hours after reporting in he was undergoing surgery. The Fontan procedure requires the surgeon to open the chest which evidently is more difficult this time as it has been done twice before and is full of scar tissue. Once the chest is open the surgeon removes the inferior vena cave from the atrium and connects it directly to the pulmonary artery (all of this was done three years ago during the Glenn procedure with the superior vena cava). At the end of the Fontan Gabriel's cardiopulmonary function is quite unique: his right ventricle pumps blood out to perfuse the body via a recombined aortic arch and the blood returns directly to the pulmonary artery, passively moves through the lungs and returns via the pulmonary vein into his atrium, dumps into the ventricle and repeats, on ventricle, one atrium. His oxygen concentration increases but pressures drop (which create other problems he will address in life but that's something else).

Two and a half hours later, about two pm, Dr Hanley met with us and told us everything had went smoothly and they did not need to go on bypass (heart and lung)! He said they would have him upstairs in the CVICU (cardiovascular intensive care unit) in less than an hour and after they had Gabriel settled in up there we would get to see him!

Long, long day.

Fontan PreOP

Aunt Linda cut Gabriel's hair to a riveted audience, Aunt Julia, Grandma, Cousin Erin, and Gabriel's favorite playmate, Grandma Great.

Beth and I have spent the last month arranging for Powell and Bella as they start school the day after Gabriel's surgery, we requested earlier dates but you work with what they give you. So, Amaya is taking care of Powell and our friends Shelley and Chris are taking in Bella.

 Saturday we drove from Nampa to Reno.

We stopped for lunch in Winnemucca, Gabriel noted something "weird" on our front bumper, I told him it was a fish skeleton and a fish must have jumped up in front of as as we were crossing some bridge. He said, "Alright." and we moved on.

As we left Winnemucca I had an opportunity to shoot a developing fire!

 

 

 

Gabriel at the Reno hotel.

Loving the pool!! No pool for quite awhile after open heart surgery so fortunately he enjoyed it well.

San Fransisco across the bay as we drive across the San Leandro Bridge.

Gabriel did awesome in pre-op, echocardiogram (left), EKG (right), X-rays, blood draws, physical and vitals! What a good boy.

 Lunch in the cafeteria, he has no idea what's coming. We are not ready for them to cut his little chest open, again.

We ended the hospital day around noon so decided to head for Half Moon Bay where we were treated with sea lion's cavorting in the surf and humpback whales breaching in the bay! I told Beth this had to be a most awesome omen!

The Last Propane Fill

The Summer of 16 experiment is winding to a close. It was real, it happened, we survived, it might not have been my best decision, it was cozy…

If you didn’t know we spent the summer in a 29 foot class C motor home.

Friday afternoon I filled the propane tank on the motor home for what should be the last time this summer. Saturday the 20th Beth, Gabriel, and I head for Stanford for Gabriel's final surgery and on our return we should be moving into our new house. My last blog post was two years ago so I might need to address a few details that have occurred in the interim.

 In January of 2016 we met with our realtor to discuss the possibility of selling our house and down sizing our monthly payment. I’m less than five years from retirement and our original plan of Beth returning to work has changed several times over the last decade. The latest version making the most sense to us is her staying home to support all three of our kids, so we needed a financial adjustment. We liked the house but it always lacked a little; a corner lot so more than twice the sidewalk shoveling, a side yard instead of a backyard, a smallish yard resulting in a compromise garden and kids play area, and a busier road than we preferred.

Prior to house considerations Gabriel was admitted to St. Luke's Hospital in Boise for cardiac catheterization to clearly determine his heart's condition. The procedure consists of inserting a catheter (long hollow tube) into the groin via the femoral artery and the femoral vein and into the neck via the jugular vein. The Cardiologist can then use the catheter to inject dye and assess circulation, measure pressures within different areas of the heart, and insert platinum coils into deviant colateral veins which the body apparently forms because of the previous surgeries. The body is trying to correct itself and send out veins to the lungs which the cardiologist must occlude with the coils so the body does not undermine the surgical procedure and harm itself as it attempts to fix itself. This is another one of those things that the cardiac surgeons and cardiologists have figured out during the history of this procedure- Norwood/Gelnn/Fontan.

Sleepy Cousin Amaya came by to see sleepy Gabriel off at 6am and take care of the other two kids for us.

At the bottom of the photo it is evident his diaper is not secured and a cotton ball is tape over the femoral artery catheter insertion site, the opposite leg is similar for the femoral vein insertion site as well as the jugular vein in his neck.

Band-aid over the jugalar site.

Apres-cath breakfast (the next day) hotcakes and bacon, maybe not the most Cardiologist approved breakfast but well deserved.

After the cath we got down to business regarding the house. We rented a storage unit and sold, donated, and stored a lot of our stuff. The house went on the market the first day of spring break and we headed for the Oregon Coast.

 Multnomah Falls enroute to the Oregon Coast.

Agate Beach

While at the Oregon coast the house was shown 19 times, we had an offer within two days of our  return but after the home inspection the buyer realized the house really had been built in 1941 (there were a few things that were old) and pulled their offer. Two days later we had another offer and sold the house just over a month later.

The motor home needed exhaust manifolds and ball joints and new tires which I had intended to address prior to the house sale but if I'm writing about it I didn't quite get there in time. The new owners also wanted the house prior to the end of school so everything converged in a most untimely mess.

We moved into the RV but only for the weekend. Monday the RV went to the tire shop and Beth moved into a hotel for 4 days and 3 nights in Boise so the kids could finish school without a daily Nampa commute(I joined them on the 3^rd night as I was on duty the previous 2).  I  had hoped the mechanic could get the RV in while we hoteled but unfortunately it was after we checked out of the hotel so we moved into Mom and Dad’s fifth wheel trailer. The kids and Beth had slept in 5 beds in 11 days: our house, The motor home, the hotel, the fifth wheel trailer, back into the motor home…unsettling. 

So we took a day trip to Silver City the day after school got out while waiting on the motorhome to be finished. We needed a diversion and poking around a living ghost town with an active restaurant was a day well spent.

The Most Boldest Picture Title Ever Printed

 Of course I had to ogle the old fire hydrant. Gabriel liked hanging out on the porch of their general store/gift shop. The old hotel still serves lunch and rents out a few rooms but no ice is available as they only get 110v power so can't run an ice machine.

 I believe all of the homes and buildings are privately owned so you can walk the streets and view but stay off of the private property.

The town also has two cemeteries, the first, larger and fancier is for fraternal organizations: Masons, Odd Fellows, and the like, the other cemetery is for normal folk.

I returned to work and the rest of the fam went to the movies.

Beth and the kids watching Zootopia in 3D, you would think they were at a dairy with that much cheesiness!

Since Gabriel’s last surgery we have been surviving, Beth has kept everything together while the kids were in school, Gabriel was growing, (doing well but still a cardiac kid),  this third surgery ever presently loomed over us, and I was working on my MFA at BSU. I graduated last fall and much of it was an accomplishment in frustration but it is done! I haven’t blogged much due to the MFA program and the writing time I could find has gone towards my novel.

I had romantically envisioned a summer of travel and awesome vacations. Whenever naysayers would comment, “I couldn’t spend the summer in a motor home with my family.” I would reply, “You get to change your front yard whenever you feel like it and go find the coolest front yard imaginable.” I was ready for the adventure and looking forward to experiencing old favorite ‘front yards’ and discovering new ones.

Our first trip was Alturus Lake in the SNRA of the Sawtooth Mountains, a most favorite family destination. We’ve camped numerous times throughout the area at Fourth of July Creek, Redfish Lake, and Stanley Lake but Alturus is our favorite. We packed a raft, a couple of old windsurfing boards for the kids to use as stand up paddle boards (they won’t support an adult unless under sail), and headed for the picturesque mountains when I got off duty on a Sunday. As a firefighter I work 48 hours on and then have 96 hours off.

 Arriving in late afternoon the day was cool but pleasant, the kids played on the beach and we planned for a fun filled four days of aqueous recreating and relaxing. It started to drizzle and built into a rain, so we moved inside for the evening and woke to more rain.

It rained- it rained for almost four days straight, or maybe better said, it rained for 3 ½ days and then it snowed, it precipitated almost constantly for four straight days.

The third day we took advantage of a break in the rain and got a hike in, played some games.

Of course in the Idaho mountains we found arborglyphs and we were happy to meet the artwork of Mr Gabriel Perez.

The next four day, we wanted hot temperatures and cool water. We opted  for closer proximity and drove 30 miles out of Boise to Arrowrock Reservoir. We blew up the raft, played in the water, had fun, and could somewhat tolerate a group of foul mouthed waiters camped beside us, but we had to leave when a foursome of whiskey tango skin heads arrived.

Driveway living is an experience; dumping the holding tank once a week, doing dishes and taking showers, and going potty in the house to conserve the holding tank and extend trips to the dump station, thanks Mom and Dad for giving us a place to stay and graciously tolerating us. Space is a limiting factor.

the lone single cup coffee maker that does it all (and was a nice Christmas gift from my compadre, Rich Brown.

So my coffee repertoire moved from a french press, coffee grinder, teapot, carafe, and mini espresso maker, to...







In early July we headed for Atlanta (Idaho) the road beat up the motorhome but the kids had fun catching garter snakes, playing on a rope swing, chatting with the Fire Chief, and checking out the school.

 The kids had blast playing in the old Atlanta school house.


Gabriel loves firetrucks.

 Pretty cool view looking at the south side of the Sawtooth Mountains, a month prior we were camping at Alturus Lake just on the other side.

A week or so later and the view desert-ed us at CJ Strike Reservoir. Bella contemplated or... 

 The boys inflated the raft, we have realized that whatever your boy is-- he is  a little boy. Beth and I noted this with Bella, we gave her trucks and dolls and dinosaurs and every masculine/feminine representative toy imaginable because we KNEW it was nurture not nature! And she loved fairytopia and barbie and pink and she did like the dinosaurs, and the most elegant church/formal/princess dresses imaginable... and we knew it was just an anomaly, a coincidence, we were better people and better parents than to raise a gender specific personage. And we had Powell and he loved noise and farts and loud and trucks and climbing everything and motorcycles and dismantling all things and smashing anything and these were all evidently DNA components and we thought- parents and nurture be damned- these critters are hard wired the way they are. Hopefully we can assist with minor adjustments, cause we've got no control over the big ones.

So the boys inflated while Bella read on the shore of CJ Strike reservoir. The camping trip was fun, the water was great and we observed F-15's fly over head on their way to a range. Watching and hearing the jets cascade above us made me think of a bumper sticker I had seen,

and I thought what a stupid comment as it depends completely on perspective as an equally relevant bumper sticker could state, “jet noise- the sound of oppression” or another could read, “jet noise- the sound of dependence on foreign fuel to support the world's most massive war machine and therefore the necessitation of foreign policy compromises resulting in the undermining of freedom for the majority of all of the citizens of those affected countries” but that is some real fine print to fit on a bumper sticker and thus negates the point of a super simplified declarative opinionated statement which is a bumper sticker or as we say in America, a political platform. Boil it down to it’s simplest most basic ingredients and feed it to the people, distillation is something America is awesome at.

In July we started looking at houses, we had planned to wait until the market potentially dipped this winter but with Brexit and the dropping interest rates and motorhome life we thought we could change our plan. The more we looked the greater our anxiety grew and with Gabriel's surgery looming we knew we would make a poor decision so put house hunting on hold.

In late July we headed to the Seattle area for our best trip of the summer. Bella played in a High School Lacrosse Tournament in Snohomish (one of only two middle schoolers on the team!)  but first we visited our friends Jill and Nathan and their three kids in Olympia.

Bella farthest from camera

 

 

 

 

I bested their neighbor, the female arm wrestling champion of Olympia (officially- she does hold the title)!

We celebrated Powell's 9th birthday having lunch in the rotating restaurant in the Space Needle!

On returning home we took another look at houses and the one we had liked earlier was down 20k so I offered another 10k less and they said yes!!!

So the offer is in, accepted, and going to VA funding. This is my first use of a VA loan and I thought back to what guys used to say about military service, "A DD214 and 50 cents would get you a cup of coffee" (Although I think it is currently a DD214 and 2.41 at Starbucks). Military service has worked out for me though- 5 civil service points accelerated my fire department hire date by one year and now I'm using my VA loan, nothing down and a better interest rate than average. Still doesn't mean I won't criticize America's foreign policy though.

Beth had a dream of G with his chest open on the operating table, she cries every day thinking about what is about to occur. I think of it every day and think of all the potential consequences and pray the right one may occur and as I watch the Olympics and see that Stanford has more athletes than any other school in the country and not only are they present but they medal, Stanford Olympians and if it were a country it would be the 10th most winning country and I think we are taking Gabriel to the best place in the world, to the most talented, smartest, most capable, most excellent place that exists… Stanford has given our boy life and we believe they will continue to do so. Go USA! Go Cardinal!