Here We Go Again...

Silly me... I actually believed that Ari's most recent esophageal surgery and subsequent esophagram that showed how water helped him swallow would have "fixed" his problem with food impactions.  Why would I allow myself to go down this path of naive hope?

Food started to get stuck around mid-March.  At first the episodes were spaced out, but the frequency slowly increased.  We wrote it off as not chewing well or not drinking enough and continued to spend entire meals saying "Small bites!" "Chew better!" "DRINK!".

Reality settled in for Larry and I and we knew this pattern was going to continue.  Looking ahead, we once again wondered how we would manage meals, school, and countless doctor appointments.  "Next year will be better... we'll be over this hump... he'll be older..."  These are all words we've said before.  Knowing about the pending bladder and possible spinal cord surgery, we made a life changing decision for our family.  I resigned from work.

Now, it may surprise some of you to learn that I worked full time, returning out of necessity just 5 days after Ari was home from the NICU.  For those that know me well, the surprise lies in the fact that I am able to step away from a professional career.  Working from home in a sales job (I left management when pregnant with Ari), I found ways to balance appointments, surgeries, and emergencies while still keeping up with my job responsibilities.

I made two major mistakes in my career within 18 months of each other.  First, I left the Fortune 500 company where I was respected and successful and they supported my family situation.  I believed that leaving would allow me to escape the stigma of being the mom of a child with special needs.  They saw me go through so much and I wanted a fresh start.  As I reflect on the situation, it was more of an escape that new venture, but I didn't know it at the time.  I'm embarrassed that I felt this way, because now that "stigma" is my badge of honor and I wear it with pride.

A few months into the new job, Ari required 2 procedures a week for 12 weeks to try to surgically "stent" his esophagus and my company's reaction was less than supportive.  They added geography to my territory and increased my travel to 3-5 days a week, even requiring me to miss his third birthday.  I begged them to allow me to go to this training session late.  Their answer?  "He's young... lie to him about the date.  He'll never know."  I was heartbroken...  I went to the training, winning first place honors for both sales and presentation skills and resigned soon after.

Mistake number two was selling myself short.  Feeling defeated from the last experience, I decided to take the easy route... maybe I could no longer handle a high-level job and my family situation?  I accepted a position that was significantly below my skill and pay level.  This was a really, REALLY  bad idea...  After voluntarily going part-time to better manage Ari's appointments and recent surgery, I decided it was best to resign and focus on the family. 

To celebrate my new stay-at-home status, I took the kids (plus one of Liv's friends) to the gulf coast for Spring Break.  Larry had to stay behind to work.  While there, Ari had 3 major choking episodes.  One was so bad, it caused panic to set in... I was the only adult with 3 kids and the local hospital would not be able to handle his needs.  I searched the Internet on my phone for the closest major pediatric hospital and contacted friends vacationing along 30-A to see if they could take the girls.  Thankfully, he eventually got the food out on his own.  At another point, I had the leave the girls alone in a restaurant while I took him outside to regurgitate a food impaction.  I kept running to the window to look in at them and then to Ari's aid, feeling overwhelmed and helpless.

We got home on a Thursday and by that Saturday, Ari had food stuck to the point where he couldn't swallow his saliva for 8 hours.  I arrived at the ER on Saturday night and they were expecting us.  Ari was prepped for surgery and we were swiftly taken to surgical pre-op where he waited for a midnight procedure.

When the anaesthesiologist came in, Ari put on his "brave face" that I've mentioned before.  Mouth in a deep frown, brows furrowed, and chin quivering... he refused to cry.  If there exists a moment in time when I can explain the true feeling of heartbreak, this is it.  It's sadness, pain, and nausea all at once plus the deep desire to shout out loud (but what would I say?) and hold my baby close.  "It's OK to cry." I told him.  He shook his head no, frowned deeper and raised his chin in bravery. 

"It breaks my heart." I said, more to myself than anyone else.  "Me too." The anaesthesiologist added.  Surprised, I looked up and his eyes had filled with tears.  He looked away, cleared his throat, and got back to business.  Later, one of the nurses told me that no one had ever seen him emotional over a patient, but he was extremely touched by Ari's bravery and medical history.

Click the link to see his pre-op video here.  You'll get a glimpse of his brave face toward the end, after I say "I love you".  His words that are hard to understand are, "Mommy, I'm scared."Ari pre-op 4.7.12

It took two hours and 50-60 entries into Ari's esophagus to get out all of the food, piece by piece.  We were admitted as inpatient and when the GI who performed the surgery (one of Dr. Blumenthal's partners and ironically the same one who was on call for Ari's last emergency procedure) came out to talk to me, he gave me a look that I've seen from other doctors in the past.  It's one that can only be described as hopeful and sympathetic at the same time.  Making the sign for The Father, Son, and The Holy Spirit, he said a prayer, adding "I am not a practicing Catholic anymore, yet I feel compelled to pray for your son."  I found comfort in this, just as I do when his pediatrician ends most appointments with "I'll pray for you".  There are so many things I love about The South, and unabashed displays of faith, regardless of religious belief, are one of them.  Home by lunch, we slipped right back into our normal routine.

The last two weeks have been filled with appointments and triumphant lines through my to-do list.  Ari's urology appointment provided some clarity as well as reassurance in my decision to resign. We cannot schedule the Mitroffanof (hole to catheterize his urine through his belly button) until after he has a spinal MRI (late June), a likely re-release of his tethered spinal cord, a urodynamics study 3 months later, THEN the Mitroffanof created, a 10-12 week recovery, another urodynamics study, and a possible bladder augmentation.  This is all in addition to any esophageal problems.

No worries... NEXT year will be better... We'll be over this hump.

Sound familiar?