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.

1 comment:

Mom Gidcumb; Dad Gidcumb said...

Thanks for honest, open explanation of what you guys are experiencing. We can not even imagine the stress. We went through a bit of this when our older son spent weeks in intensive care hanging between life and death after having his appendix taken out.

You sharing this helps us to pray for you guys in a more specific way. Aunt Judith Ann and Uncle Dewey