Friday, July 19, 2013

Tube Less

I am absolutely not advocating a disinterest in the band The Tubes nor their song She's a Beauty, both are classics and significant components of both my adolescence and perspective on shallow, sexist, fickleness in regard to feminine beauty (although I was fortunate enough to hook up with the smart hottie so I'm far from beyond reproach, I'm probably actually kind of reprehensible but I ended up with the hot chick so I can live with whatever label persons wish to assign). There is something specifically delicious and lovely about extended run on sentences, kind of raising a finger to the literary world and saying "I can say what I want and don't care what your rules are!" or maybe that's just the sub motto of...

The last week or so was a whirlwind; Beth's folks came up to visit and were right on time to check out the Lavender Festival (a week in which all the lavender farms in the area sell every conceivable lavender influenced product possible) and rode into the Boise foothills with Beth to enjoy a little altitude (Florida tops out around 200 feet). 

My Grandmother Pearl returned from a week at the Oregon Coast with my Aunt Julia and spent several days with my folks. 
It's awesome to observe my 92 year old Grandmother interacting with her two great Grandsons. I do realize how fortunate I am to have such a wonderful person in my life. After playing with the boys she and I discussed books and spoke of our recent readings and recommended varying texts to each other. Her reading list is varied, extensive and extremely vast... the best example I can think is this; last summer she attended an opening for a show I assisted as an assistant to the curator. The show featured the collection of David Leroy (former assistant Governor and attorney general and book collector and Lincoln scholar). So I assisted in researching a few books, rebuilding some cabinets and doing whatever the Curator and organizer Stephanie Bacon had in mind. The coolest part of the whole thing was Grandmother and the Chair of the BSU English Department conversing about literature on par and forgetting anyone else was in the room. That's the type of person to emulate, a self educated person who can converse in toto with a Phd on their subject of expertise. 

I watch her interact with the boys and hope Gabriel might be as smart as she is.   

 We broke away for a few hours and attended the zoo. The Sloth Bear rooted at the glass hoping to break through and share Powell's corn dog.
 I worked 5 out of the 7 days Beth's folks were here. On one of the last days we observed a pyrocumulus cloud from the Grimes Creek fire just on the other side of the foothills. My buddy and co-worker Rich advised us as to the name of the cloud, which none of the rest of us knew and were therefore suitably impressed. Walking into the grocery store a little old lady asked if we'd seen the pyrocumulus cloud and after returning to the Fire Station and turning on the news we heard the weatherman Rick Lantz refer to the large pyrocumulus cloud. Poor Rich.
 My second day at work my Dad showed up with a unique gift, a new (to us) minivan and proclaimed Beth a soccer Mom. This is what happens when Dad is a retired used car salesman (and decent human being). Powell cannot not press buttons and switches and dismantle things, Dad cannot not turn over cars and wheel and deal and buy cars and boats and campers and stuff. We've been humbled and grateful and fortunate for so much help in the past year but no one has given us a car. Beth cried (in the good way) when Dad dropped it off and gave her the keys. He can be gruff and short and abrupt and short and extremely loving but without the requisite language so he does what he does with everything else, he figures out a way to make it work and in this case that is expressing his love.
 If I made more pragmatic vehicular decisions maybe Dad wouldn't have to get involved but I think "cool" first and "running" second. This thing looks great in the driveway.... which is why Dad interacted.
Tubeless! After bragging in the last blog that we had taped him so well that he wasn't pulling the tube; the next day he pulled it twice. The day after though he took several 60 ml (2 oz.) bottles, the day after that a couple of 90ml (3 oz.) bottles, we decided on Thursday to see if he could take 120 ml (4 oz.) bottles with no tube feeds and all meds administered orally. He did! Friday morning we untaped the feeding tube on his cheek and let him pull it himself, he pulled it without fuss (if we would have done it, oh the horror). He is now on normal enfamil via bottle and loudly announcing when he wants chow. Thank you all for your prayers, thoughts and wishes in helping us get here! We are moving into a good place!

Sunday, July 14, 2013

Side Effects

Still getting the blog caught up to date, this post should move things closer  to real time. Gabriel's stable and we're working at enduring but another Firefighter's Child is in dire need so I'm starting this off with a link to Ally Defur's caring bridge page. Her Mother is a Nampa Firefighter, the entire family was involved in a rollover accident last week and little Ally is fighting for her life. She could use your prayers and thoughts.

We arrived home in the early evening and met my folks at our house. The kids were overjoyed to see us and happy we were home and... Isabella decided to spend the night at Grandma and Grandpa's, we didn't take it personal as her cousin Jackie was spending the night with the Grandparents. Mom and Dad can't compete with cousin Jackie. Powell though hung out with us, so after bedding Gabriel we snuggled him up while watching a movie.
The next day I ran into Spiderman, coincidence we were both shopping for Charmin ultra soft? I think not!

That Saturday we took Gabriel on his first official camping trip to Anderson Ranch Reservoir. A few years ago my Dad decided he wanted to celebrate his birthday and Father's day at the reservoir and a family tradition was born. It has firmly become Isabella's favorite supplanting Christmas.
We always camp at the Pine Dock and are therefore treated to a spectacular view of the reservoir and surrounding terrain. 

Several years ago I was attending a dive rescue course in Calera, Alabama, a sleepy little town about an hour south of Birmingham. Half of the guys were cops so a considerable bit of banter bounced back and forth between the firemen and the cops. The first day we performed sub surface boat based search patterns at a local lake. The day progressed uneventfully (I did find an upturned old car in the mud and wrenched the old license plate off of it, by old I mean 1920's era.) The following day we conducted swift water diving in a river at the base of a dam. In fact the dam which created the "lake" we had dove the prior day.
 I mentioned this observance to one of the local cops "That's not a lake that's a reservoir." 
"Toematoe, tomato." he replied "Ya'll call it one thing we call it another."
"Oh yeah, semantics" I responded "Like what ya'll call relationships we in the West refer to as incest!" After a few tense seconds in which I second guessed the wisdom of verbalizing my response, laughter prevailed and we were one again. A group of divers focusing on a mission. 
Beth and I can't do much together anymore, we just tag team and do our own thing either caring for Gabriel or entertaining one or more of the kids or every now and then we get a wee bit of personal time. I watched Gabriel in the early morning while she borrowed Aunt Norma's kayak and paddled for an hour or so. Beth relieved me and I paddled out on a windsurfing board, too small to support me standing but just the right size to allow me to paddle about and abrade my nipples.

 Returning to shore, Isabella asked if I would paddle to the the far shore with her and Jackie. I was gassed after paddling on the board, assessed they were both in watercraft with life jackets and blessed the adventure.
 Far shore, the off center dark spot at the waterline are the two cousins.
 Powell and Choco didn't realize the girls were gone and enjoyed the near shore.
 Powell may be our little waterman.
The end of a wonderful adventure, I'd be lying if I didn't say Dad was anxiously awaiting the return.

 Amaya and her folks joined us taking the kids on 4 wheeler rides. Isabella and Powell had to ride with their much loved Cousin Amaya.
 Jackie riding with Aunt Norma.
 My Dad and Mom in their rig with Isabella and Cousin Jonnie.
 Dad and the little camper.
 Norma in position snapping pictures and probably simultaneously posting to Facebook. Kind of like having your own paparazzi (albeit much nicer than the normal Hollywood fare).

Camping with a high needs baby gave us cause to really appreciate the  motorhome which allowed us to fire up the generator to power the microwave and the A/C.

Seems only a few years ago Beth and I backpacked past RV'ers deriding their patheticness.

Two nights was all our pathetic parenting skills could handle and we returned to the coddling of a house in the big City of Boise.

 We feel like we're running on empty and about 5 steps behind. The Occupational Therapist (OT) and Dietician stopped by the other day to work with Gabriel (and us) to transition him from the NG tube (tube feed that enters his nose and runs down his esophagus to his belly) to a bottle. Gabriel's Physical Therapist (PT) had recommended these two persons come out to help with the bottle feed because "his cheeks and tongue are really tight and we have to catch him prior to 7 months before he develops an oral aversion, you guys are in for a tough year."

"A tough year?" What the hell was the last year? Beth and I weren't sure whether to laugh or cry or... We just want to get the little guy on the bottle to simplify all of our lives. The tube is a royal pain as we have to transport the pump and rig it everywhere we go, around the house we have the pole which we move all over trailing Gabriel with his feed. We're getting better at solidly taping the tube to his cheek so he doesn't pull his NG tube as often as he used to. Not long ago we had the brilliant idea of tucking the tube inside his sleeping gown, the tube left his cheek, ran down his back and exited at the bottom of his little boy sleeping dress. Exiting the bottom of the gown the feeding tube connected to the supply tube coming from the pump, we didn't envision him kicking the two apart. An hour later and the feeding pump had filled his crib with formula. Or last night; he managed to uncork his tube and while he was disconnected from the pump the formula in his tube and some stomach contents made their way back out and soaked his nighty and woke him up.

Prior to leaving the Dietician stated she did not need to return as often as the OT but she would like to stay up on Gabriel's feeding pattern. I offered to send her a weekly Excel worksheet with the information and she commented "I can't believe how well you two have it together with all of this going on." Later Beth and I discussed that if we have it together there are some folks out there in real sad shape.

Our marriage is officially the legal drinking age, as of June 20th we celebrated our 21st wedding anniversary. 21 years is literally a life time, a generational gap; if we use the 20 year generational standard we are 2 generations removed from Gabriel. Although the census bureaus generational periods show him more as Generation Z. Recent generational nomenclature vividly displays a significant lack of creativity.

The first group to begin current labeling scheme Generation X was birthed from Post Modernism, the Punk scene and a free flux melding of everything; disparate world cultures, music, technology in the form of videos, cellphones, vcr's, pacman, starwars, cd's, pc's and the unique phenomena of square knit ties, the Brat Pack and Billy Idol.

 The youthful members of Generation X, the band which gave Billy Idol his start. The band was named after the book Generation X,  written in 1964 it chronicles interviews of counter culture British youth. Idol's Mum owned a copy.
Headin for the 80's. 

Generation Y though? and Generation Z? Sometimes there is a real dearth of creativity in this world (Hollywood is a prime example: remakes, sequels and derivative movies). I've heard of Generation Y referred to as the Millenials, I can dig that. Post 2000 is where my kids exist though, Z... gotta do better.

Gabriel's healing and thriving, in a few weeks we should be able to pick him up under his arms. We still have to take sternal precautions as his sternum is wired shut and we need to make sure it is completely healed prior to lifting him in any manner that stresses the area. Dr. Womack is fine tuning Gabriel's medications; lessening some and removing others. We are currently weaning Gabriel off Propanolol and experiencing the side effects. Gabriel was originally prescribed Propanolol to lessen his tachycardia (rapid heart rate) after his Norwood procedure. The drug is a beta blocker which basically suppresses epinephrine and norepinephrine and also adrenalin. We initially cut his dose in half but the restlessness and agitation he experienced caused us to cut it by only one fourth and take a longer period of time to ween him off the med.

This experience is ripe with side effects; I don't think Beth and I have communicated without regard to baby and cardiac issues for almost a year. My folks watched the kids for an hour or so while we rode bicycles downtown, ate dinner and spoke to a relative stranger (each other) the end result being Earle stating "Let's just ride home, we're done!"

A Nurse at Lucile Packard told us the hospital staff observes many couples experiencing child diseases, illnesses and the like end their marriages in divorce. It's easy to see why; one kid with a significant health issue could put anyone over the edge but add that kid into the normal hanging on the fringes family; siblings battling, finances pushing, personal time non-existent and familial armageddon is just around the corner!

I work and cook and help a bit with the kids, but that's it. Beth does the rest of the crap (not demeaning her at all instead just the opposite I applaud her for doing all the stuff that makes a family work). The non-congratulatory, mindless, essential to the family, absolute drudgery crap- bills, laundry, dishes, housework (toilets, counters, vacuuming, dusting, scrubbing, mopping, ugh...), discipline, grocery shopping, lawn care (I hate the stuff), errands, etc... and a third of the time she has to do it as a single Mom. A Firefighter's wife is a single Mom one third of her life. The Boise Fire Department schedule is 48 on, 96 off. It's a cool schedule when off duty but when at work we're gone for 48 hours. Only Mom's with traveling husband's can relate. The additional problem exacerbating the issue is Dad's selfishness, after 48 hours at work sometimes it's nice to get a little alone time. This doesn't happen very often and adds to the tension level.

 I did manage to build a 2 kayak trailer so the kids and I can bike to the pond about a mile away and paddle to escape the heat and have a little fun.
 Isabella assisted in design and construction.
La piece de resistance! 
(sorry about the lacking aigu et grave)
Powell ready for water!

This last week Powell and Isabella have spent each morning at basketball camp taught by their friend Noah's Uncle. A heartfelt thank-you to Noah's folks Dave and Emily who enrolled the kids and have transported them to and from each day. We are so fortunate to be surrounded by so many people who reflect what humanity is supposed to look like. The Gabriel experience continues to humble us and test us each day but the kindness, prayers, thoughts and love so many of you direct at us are felt and needed and nourish us enough to make it another day and sometimes even two.

Friday, June 28, 2013

Gabriel's discharge!

Gabriel's feeling so good and ready to go that he thought he could help remove some more of his equipment or at least give it his very best effort.  Baby rodeo! Right hand trying to pull his pulse oximeter wire off his foot. Left hand grabbing both his nasal cannula (oxygen delivery) and one EKG (heart monitor) lead.
 Another view of the lad in action, intent on freeing himself.
 Busted! with one EKG lead displaced. These just stick right back so nothing as severe as pulling an RA line which Gabriel did after his first surgery, the Norwood procedure. The RA line is a right atrial line that enters the belly and then runs directly into the right atrium and should be pulled by surgeons not babies. Maybe he's just in training; a rodeo career is out but he could be the first HLHS surgeon?
Our time in 3 West (the cardiac convalescent ward) has been tiring and we're ready to depart. It has been wonderful to see some of the great staff again. This place is hard though and I commend all the nurses who work here. 3 West is always filled to capacity and this time there are an inordinate amount of parentless babies. One Nurse commented that every Nurse in the ward has a baby on her hip because there aren't any parents. The entire concept of 3 West is a partnership between nurses and parents, a transitional place focused on moving the child out of the hospital with significant  assistance from the parent(s). The staffing just isn't adequate when multiple children don't have parental support.  Gabriel's roommate is a doleful eyed baby who is Gabriel's age and was initially a chubby baby but is now underweight and simply not thriving. He's underwent cardiac surgery and also has some respiratory issues. He's too fragile for the nurses to pick up so he just lays in bed, the TV turned to the "calming nature sounds" channel and his mobile running non-stop. He starts to cough each cough exacerbating his respiratory distress causing each cough to subsequently increase in volume and hoarseness. On my shifts I've sat by Gabriel or lain on the couch beside him (attempting to nap) one or both of us awakened by his roommate. The nurses have multiple charges and can't always rush to his bedside and calm him, I lay there and wish the nurses would hurry. On Saturday the roommate's parents showed up and spent about an hour with their baby. The Dad held him a little while the Mother took some photos. They're an attractive mid-20's couple, he's dressed fashionably, she's just over the line on the trashy side. We find out later from the nurses this is about the average amount of time they spend with their baby per week. A couple of hours after they leave the roommate works himself up again. Beth opens his curtain and consoles him, talking to him sweetly and motherly. He calms and looks at her. She chats with him a little more.
"What are you doing?" I ask
"All he wants is a little attention. I go talk to him whenever he starts crying and the nurses are busy." Beth responds and adds "I wish I could do something for him, maybe I could buy a toy for him from the gift shop."
We both know though that a toy isn't what he needs.

On Sunday everything is looking good for discharge. We can't believe it, open heart surgery on Tuesday and discharge on Sunday!

 Gabriel contemplating all of the exciting things he's going to do after leaving the hospital.
At shift change one of our favorite Nurses, Michelle came on duty but she had another baby instead of Gabriel. We had bonded with her last time, one of those sincere, direct, genuine people that Beth and I are drawn to and relate with immediately. She saw we were being discharged so stopped by to say hello and see Gabriel. She scooped up Gabriel and nuzzled him, moving him with a rapid fluidity and cavalier expertise that I could tell made Beth a little uneasy. Michelle moves fast but with a competent grace, I felt calm but then again on the Swope side we might lean a bit toward the cavalier.

Powell and I left Albertson's Grocery store a few days ago and ran into Engine 2. It was in fact C-shift and I should have been on duty but my buddy Scotty was working for me. We bear hugged in the parking lot and caught up briefly all while Powell balance precariously on the shopping carpet return area bars. Powell balanced on one lower bar with the upper in between his thighs, swaying back and forth and catching himself at the last minute to recover to a neutral position and sway to the other side. While talking Scotty continued to shift himself and move into a catching position anticipating Powell's inability to right himself and subsequent impact with the asphalt. After his 3rd or forth reposition Scotty noticed my laissez-faire attitude regarding Powell and commented "You just have to let him do it, don't you?"
"He's got some awesome balance and if he takes it too far..." I said.  "He can't get awesome balance without falling sometimes."

Two weeks prior though, Gabriel's roommate had started his coughing cycle again and our joy at leaving and seeing Michelle was tempered by the baby's woeful, raspy cough. Michelle soothed him and angrily announced to nobody. I'm calling his parents! We overhead snippets of her end of the conversation (our room was just off the Nurses Station) and could tell she was being fed one excuse after the other. She adamantly requested the parents to come to the hospital telling them their baby needed parental comfort more than anything. We finally heard her state to another nurse after hanging up the phone. "They aren't coming, I think I woke them up." It was about noon.

 We stopped by the Nurses Station on our way out and said goodbye to all of Gabriel's wonderful care givers. Andrea was his Nurse of the day and has taken great care of him several times.
 Calling the elevator!
 Headed down.
 Dad performing an elevator monkey tribute to Bella and Powell. I initially tried to hook the right foot on the rail but quickly realized that if I was successful the consequences would be dire!
Almost out!!

 It's bittersweet leaving... We really, really want to leave. We want to take our baby home and get him as healthy as can be, but this place has been so significant in our lives. We have met so many wonderful, caring people who have saved Gabriel's life and affected our lives so immensely. We don't want to be here and won't miss this place so much as we'll miss this place's people!
 Gabriel relaxing on the walk back to the motorhome and dismissively commenting "Oh that, that was nothing. I'm good."
 As soon as I took this photo I thought "WOW! That is really poor context! " Baby stroller all alone with a bunch of RV's in a parking lot, maybe not the best thought out photo, but the composition...
 Back in the motorhome and ready to head for Half Moon Bay, our convalescent site away from convalescent ward!
Pure contentment, or exhaustion, or relief, or just home.

We have never been to an IKEA and have been too busy to stop by the one in Palo Alto. After discharge from LPCH, my wonderful Cousin Amaya met us at the parking lot and watched Gabriel in the motorhome while Beth and I explored the Swedish superstore!
I think discharge from hospital, freedom from baby, Scandinavian design, cool quirky stuff and a dinner of swedish meatballs all translated into absolute IKEA love for Beth.
I think she found our new kitchen (someday).
She had found reasonably priced attractive dressers on their website and wanted to check them out and perhaps buy one for Gabriel's room (soon to be built). The one downfall I found with IKEA is the construction quality of their furniture! Pressboard furniture with cam bolt fastener construction! I still shudder at the horror!
The swiveling plastic egg chairs with encompassing canopy though! It was like furniture designed with Powell in mind!
Beth then discovered the pantry storage display and fantasized about organizing the train wreck that is our breezeway.

Holy recycled materials bins!! We bought two of these.
And finished with a dinner of swedish meatballs. 

Amaya and Gabriel were doing well. We said goodbye to Amaya and IKEA and headed for Half Moon Bay.

We checked back into the same RV park at Pillar Point. While checking in the camp host asked why we were back. I was completely honest, she was very uncomfortable (babies and heart surgery should not be in the same conversation). She disappeared into her motorhome and came back with a CD The Sounds of Pillar Point (which they normally sell for 10.00) exclaiming "Here, you need to have this". It made her feel better, much like Beth wanting to buy a gift for Gabriel's roommate. We are social beings and want to do what we can to alleviate suffering, to help and when powerless to do anything else the one thing she could do was gift something. I understood and accepted.  The next day we hung out and decompressed. Beth became overwhelmed and spoke of her baby never being right. I got irritated with her and responded how fortunate we were to have him and he shouldn't even be alive. Things went downhill so I left the motorhome and rock hopped to the end of the jetty. Breathing hard I was content after physically exerting myself away from conflict and anger. I enjoyed the serenity that comes with sunlight reflecting off water. My physical activity has diminished with each child and almost completely halted when I started graduate school last fall. Until last fall I at least had hockey but a required seminar class conflicted with the weekly game.  I've got to prioritize physical fun stuff, I think I'll break the kayak out when I return home. Isabella's buddy at school is taking kayak lessons, I think if Bella, Powell and I all kayak it could be a good thing for the whole family. Daddy needs a physical outlet. Maybe we'll also get a 2 seater for Beth and Gabriel? It brought home what Beth was overwhelmed by. He will never be right. He will always be limited physically.

While home during our break between surgeries we rented the movie Chasing Mavericks shot in Santa Cruz and Half Moon Bay, just around the corner from where we were staying. Mavericks is the big wave surf spot of the west coast. The movie is about a young kid training his butt off so he can surf Mavericks with the few veteran surfers capable of handling the athletic endurance and strength required. Gabriel will never have an option to push himself physically to those levels. He'll be able to play and engage in sports but we've read of older HLHS kids that have to abandon sports when the game becomes more competitive in High School.  He never will be like other kids and will not have some opportunities but maybe that will just open new avenues we haven't even considered?

We left Half Moon Bay on Tuesday returning to LPCH as an outpatient for a final chest x-ray. He was cleared and the Nurse Practitioner told us he had set the record for discharge after the Glenn procedure! 5 days!

We walked back to the Stanford Mall parking lot, loaded up in the motorhome, waited for the lady in the Maserati to move and headed towards the land of potatoes.

It still seemed surreal, we new they were going to call us at any minute and say we needed to come back. This had happened too fast, this was the same duration we had spent last time just for catheterization!
 The farther away we drove the more real it became, heading past the cranes at the Port of Oakland we began to believe we were headed home!
 Beth and Gabriel were both overjoyed.

But that wore off so we turned on The Wiggles, we were introduced to them when Isabella was a baby. Powell wasn't interested in them at all but Gabriel is enraptured whenever they sing, maybe he'll be our very own Buckaroo Banzai (adventurer/surgeon/rockstar)!

A netflicks discovery last fall: Powell and I liked the movie, Isabella found it dreadful and Beth fell asleep.

The first day we drove to Reno and stopped at an RV park with perfectly manicured plastic grass. We parked beside Wolfgang and Ingrid a German couple in their 70's driving a rental RV on the backside of a 2 month tour of the west. After Gabriel fell asleep we had a glass of wine with them and they told us of their adventures. Wolfgang made periodic comments about humorous bumper stickers which I don't remember verbatim but dealt with being active and enjoying life and one about staying ahead of dementia. The comments seemed odd and not relevant, initially I chocked them up to a translation issue. By the end of the evening though we noticed Ingrid would ask the same question every 15 to 20 minutes. Wolfgang would calmly interject "You already asked that and they said..."

Driving through Winnemucca we had to snap a photo from the flip side of our view several weeks ago.  Wonder if two other people are sitting down to dinner and are watching us zip by at 75mph?