Thursday, December 31, 2015

Good Riddance to 2015

A few really great things happened in 2015.  In March, Blake and I went to Israel for the very first time - a life-changing trip - and returned home with a new family (our Israel group family).  In October, we watched Blake's sister marry the man of her dreams and our extraordinarily handsome and delicious children walk down the aisle at the wedding.  A few weeks later, we spent four luxurious days with Blake's sister and her new husband, Jeff, basking in the sun, sipping on cocktails, playing silly games and enjoying all that a five-star all-inclusive Mexican resort has to offer.  In November, Blake and I spent a whirlwind 48 hours in Vegas with a few of our favorite friends.  All of these things, plus more that I am sure I am forgetting, were wonderful.

Setting all of that aside (without taking any of it for granted), I am yearning and itching for 2015 to come to a close.  No question that it was the worst year of my life.  Although I feel that Blake (and probably some other family members) feel the same way, I'm going to stick to speaking for myself for purposes of this blog entry. 

I hated this year.  It was the worst of my life.  I've never experienced so much pain and fear.  It was all-encompassing, and I wouldn't wish it on my worst enemy. 

Here is a snippet from an article I wrote for a blog about traveling to Israel (when the article is published, I'll add a link so that it will make sense as to why I addressed Ryder's crisis in it):


On June 2, 2015, my three-year old son almost died.  Depending on your definition of death and how technical you want to get… he did die.  A hard plastic tube was shoved down his tiny throat so that air could be manually pumped into his tiny lungs, and large, adult hands pounded rhythmically on his tiny chest.  After approximately two minutes, his heart started to beat again and some color returned to his beautiful, doll-like, long-lashed face.  Unfortunately, that incident of cardiac arrest was merely the beginning of a never-ending nightmare.  Again, if you want to get technical about things, the acute nightmare ended after roughly two months, but in a personal sense, the nightmare never ends once you watch your child slip away over and over again while brilliant doctors scratch their chins and tell you that they simply don’t know why your child is trying to die on you.  ... Once my son was resuscitated, I sat, in a state of utter shock and disbelief, by his side in an ambulance as he was rushed to Cook Children’s Hospital and admitted directly into the Pediatric Intensive Care Unit. 
 
 
We had taken Ryder for what was supposed to be a routine tonsillectomy at an out-patient surgical center.  He had been snoring (both in his sleep and while awake, as strange as that sounds) for as long as we could remember, and we knew something wasn't quite right)  The ENT tried a less invasive treatment to see if he could minimize some of Ryder's inflammation, but once that failed, it was time to ditch the tonsils and adenoids.  I literally feel sick to my stomach when I think about that day.  I was incredibly nervous, and as hokey as it sounds, I feel like I had some type of mama-bear premonition and that my nerves were above and beyond the run of the mill nerves that any parents feels when putting their child through surgery.  I felt irrationally worried and guilty.  He was so tiny.  He's always been so tiny and so delicate. 
 
The ENT performed surgery and came to report to me, Blake and my parents.  We were waiting in a post-surgical consult room - so we were alone.  The doctor said that the surgery was completely routine and that Ryder did well.  He confirmed that Ryder's tonsils and adenoids were both astronomically large and almost completely obstructive.  He told us not to be surprised if Ryder started growing (both emotionally and physically) at a rapid rate and started sleeping better.  He indicated that a nurse would come to get us in the next 20-30 minutes once Ryder was awake from anesthesia.  We all breathed a sigh of relief.  The doctor left the premises.
 
The minutes ticked by.  Roughly an hour passed.  I was definitely concerned but not extraordinarily so.  When the door finally opened, it was the anesthesiologist, rather than a nurse, that stepped into the room.  I had liked the anesthesiologist from the start.  He had called me the night before surgery for a fairly in-depth consult, and when he visited with us while Ryder was being prepped for surgery, he was charming and great with Ryder.  He had a soothing South African accent and was extremely personable and reassuring.  When he stepped into that consult room post-surgery, I could tell he was making his best effort to keep a comforting tone and to stay professional, but something was wrong.  He said: "We have a problem."
 
As it was told to us, Ryder seemed fine as he slept in the recovery room immediately after the surgery.  His vitals were stable.  However, when he woke up, he became agitated, stopped breathing and went into cardiac arrest.  They re-intubated him (the original intubation tube from while he was under general anesthesia had been removed in recovery since he was breathing on his own), bagged him and started chest compressions.  Although there is no clear written record, it was reported to us that it took somewhere in the range of 1.5 to 2 minutes to resuscitate him.  The anesthesiologist admitted that he had actually already given Ryder the all-clear, exited the building and started to drive away before the nurses frantically called him and told him that Ryder had arrested.  He flipped his car around and raced back to the surgical center.
 
Once they regained Ryder's heartbeat, he began having repeated episodes.  He would seem okay for a few minutes, then he'd get agitated again, sit up straight, stop breathing, his face would turn blue and you'd see his oxygen levels falling on the monitor, everyone would start screaming at him to breathe, and then he'd start posturing.  They'd bag him and force oxygen into his lungs, his oxygen levels would rise and he'd rest again until the next episode. 
 
The anesthesiologist briefly described Ryder's episodes before finally letting Blake and I back into recovery to see him.  He warned that things were not yet stable.  Literally, the moment we approached his recovery bed, he started an episode.  He shot straight up into a sitting position, his eyes glazed over, he looked like he was taking in a big breath of air and then he just literally stopped breathing.  It sort of looked like when a toddler has a tantrum and they hold their breath for longer than usual before finally screaming.  Except that he didn't scream.  And he didn't start breathing again.  His lips turned blue, his face turned blue, the monitors started beeping out of control and then he arched his back and stiffened. 
 
Posturing is the worse thing you can ever imagine seeing.  It's what characters do in movies when they are having a seizure right before they go limp and die.  Ryder's tiny body arched so that his stomach and chest were in the air and his entire body was stiff as a board.  His tiny hands clenched into balls of steel.  The stiffening, the twisted fists, the complete loss of color followed by the dark purple hue that spread across his entire face.  It is the thing nightmares are made of in general, and it is quite literally the thing my nightmares are now made of. 
 
We scooted back so that the nurses could bag him and pump oxygen into his lungs and he recovered (without going into cardiac arrest).  This happened approximately 8-10 different times in the recovery room while we waited for Cooks to send their Teddy Bear Transport (i.e. ambulance and paramedic team) to transfer him.  It was all so surreal.  I cried some, and I definitely felt scared, but I felt much, much number than I would have ever anticipated.  It felt very "out of body."  I now know that I was in shock.

The Cooks paramedics were very calm and provided me with a slight sense of relief.  Whereas it was clear that the nurses and employees at the surgical center were freaked the F out, the Cooks paramedics had seen far, far worse I am sure.  We waited for what felt like a very long time because the transport team did not want to move him until he seemed stable (i.e. until they thought there was a chance he could make it through the ambulance ride without another spell).  They were trying to avoid intubating him a third time (which would only increase airway swelling) but warned me they would need to do so in order to ensure a stable airway during the drive if he couldn't go at least 10 minutes without a spell.

Ryder passed the test and we loaded into the ambulance.  Only one parent is allowed to ride in the ambulance with the child, and the rule is that the parent ride up front with the driver.  Likely this type of rule is meant to ensure that the parent doesn't get in the way and/or panic should something go awry during the drive.  The Teddy Bear team whispered and apparently concluded that they would make an exception and allow me to sit in the back with Ryder.  They had observed that he seemed to quit breathing primarily when agitated, so they thought my presence might help calm him should he regain consciousness during the drive.  Again... so surreal.  I do remember looking out the back window of the ambulance and seeing Blake following right behind in my car.  I remember the drive felt long even though it took less than 15 minutes.  I remember praying hard that Ryder would stay sleeping and not quit breathing during the ride.  To be honest, I don't really remember anything after that in terms of arriving at Cooks and navigating through the hospital.  My next memory was standing in the pediatric intensive care unit, before we had even been assigned to a room, and watching Ryder start the whole cycle over again.  Sit up straight, stop breathing, turn blue, scary posturing, lots of nurses and doctors crowding around, bagging him, preparing intubation and CPR tools and then watching his oxygen stats rise, some color return and his body un-clench before full CPR intervention became necessary.  He had somewhere between 5-10 more spells within the first hour or two while we were in the PICU.  Eventually they sedated him, put him on oxygen (and I don't even know what else) and he stopped the seizure-like episodes.

The worst seemed to be over, and we all tried to reassure ourselves that perhaps he had a bizarre reaction to anesthesia (despite the anesthesiologist telling us that he'd never seen a post-surgical reaction to anesthesia like Ryder's).  That hope was crushed when Ryder had one more episode 36 hours post-surgery.  My mom and Randi were there in the room with me.  The nurse was in the hallway.  As his breathing stopped and his face turned blue, we literally ran to the glass doors and began banging on them and screaming for help.  It was the first time that he had stopped breathing when there wasn't already doctors and nurses surrounding him.  The anesthesia theory was destroyed because, first of all, they had given him Narcan in recovery to reverse any anesthesia effects in case the drugs were causing the spells (i.e. there was no more anesthesia in his body).  Second of all, even without Narcan, anesthesia has already worn off by the 36th hour post-op.  That final episode broke us.  We had thought the worst was over and that we may never see Ryder try to die on us again.  And then there was that one last time. 

The following days were a horrible, traumatic blur.  He was seen by cardiologists, pulmonologists, neurologists, physical therapists and even gastroenterologists.  He had an EEG, which showed sluggish brain waves, but the neurologist reassured us that the slightly abnormal results were likely because of all that Ryder's body had been through and not a sign of something worse.  The EEG also confirmed that Ryder was not having seizures.  Ryder had an echocardiogram that showed a healthy heart.  He had a swallow study to see if there was anything structurally abnormal about his windpipe.    There wasn't.  He was examined front to back and top to bottom by more doctors and nurses than I could count.  He was, unfortunately, the talk of the hospital.  Doctors conferred and traded theories.  No one knew what had happened to him.

Ryder was slightly sedated for the first several days, and although he wasn't having any more spells, it was a horrifying experience.  His eyes were glassy, he couldn't sit up by himself, when he did sit he was slumped over like a rag doll, he was hardly responsive.  Ryder was gone.  My panic grew with each passing hour.  I didn't know whether I'd ever have Ryder back.  Would he be forever changed?  Did he have brain damage?  The neurologist didn't think so but it was difficult to give a full exam because he was medicated and because they weren't willing to put him under anesthesia again to perform an MRI of his brain. 

As they started lowering his medications, the days were equally petrifying.  I heard that a therapy dog was visiting and I was SO EXCITED.  I was just sure that Ryder would love seeing the dog and that it would be a fun visit after days of just laying in bed and being prodded by doctors.  We sat Ryder on the floor and the beautiful golden retriever came in with its handler.  We all gathered around.  "Ryder, LOOK, it's such a cute puppy!"  "Isn't it fun that this dog is in your room?"  "Awww, Ryder- she's so pretty!"  Ryder did nothing.  He said nothing.  No reaction.  He sat, slumped over, and he didn't even look at the dog.  I was horrified and again, consumed with panic. 

The next day, Ryder was seeming a bit more awake.  I was feeling hopeful.  The nurse said we could take him for a wagon ride as long as we stayed in the PICU unit.  My mom and I led him around in circles and then we started hearing this god-awful noise.  It was nails-on-the-chalkboard awful.  It took us a few minutes to process.  Ryder was grinding his teeth.  He was grinding them so hard and so loudly that it sounded inhuman.  I didn't know that a person was physically capable of grinding their teeth at such a loud decibel.  He ground his teeth over and over and over again.  Panic again!  I had one of several meltdowns in a hallway that day.  The PICU doctor on rounds and Ryder's nurse that day stood there as I bawled my eyes out, panicking about the teeth grinding.  They hugged me.  They explained that it is a common sign of stress.  This made me feel worse.  His poor little body and soul were stressed!  Words cannot express what these days were like.  Soul-crushing.  Heart-wrenching.  Terrifying.  Unbearable. 

I think it was around the 5th day when Ryder came back to us.  He started talking and interacting.  His appetite started to return.  He asked to go on a wagon ride.  He didn't grind his teeth.  It was maybe the best day of my life.  I knew that my Ryder was still in there.  The neurologist visited again and reaffirmed that he felt strongly Ryder would not have lasting brain damage. 

The last couple of days were relatively "happy" days.  Ryder continued to improve.  He had some visitors and actually interacted with and enjoyed those visitors.  The physical therapist came by and helped him take his "first steps."  He was weak from days without using those muscles, and they weren't sure how he would do.  He was a little bit floppy, but he was a champ.  Watching him from behind as he walked across that PICU hallway with the therapist standing close by for support was beautiful.

Discharge from Cooks, on the other hand, was TERRIFYING.  I knew I should feel happy and relieved and eager to get Ryder home.  However, no one had given us any answers.  No one told us why Ryder did what he did.  Consequently, no one could promise that it wouldn't happen again.  Every doctor has had a different theory.  The pulmonologist believed Ryder had pulmonary hypertension caused by chronic obstructive sleep apnea and that with his tonsils removed, he wouldn't have further issues.  The cardiologists scoffed and disagreed with a pulmonary hypertension diagnosis because of his healthy echocardiogram.  Some doctors guessed breath-holding spells.  Most said no way.  Some said sensitive airways combined with major surgery trauma and swelling simply caused his little body to shut down.  Maybe so.  Yet others expressed other ideas.  Each doctor more confident than the next that their theory was the right one.  Regardless, no one could guarantee it wouldn't happen again.  Without a diagnosis, there was no treatment. 

In the months that followed, he was put under anesthesia again for follow-up testing.  He had a bronchoscopy, upper GI and colonoscopy.  He had an MRI.  He had a pH probe inserted.  He spent time at Cooks again.  None of the tests provided answers.  We sought second opinions from other pulmonologists and other cardiologists.   He saw a geneticist.  He had a sleep study (yet another night at Cooks).

No answers.  No clues.  Though I did find some solace in the fact that doctors had searched every inch of his body from top to bottom and found nothing wrong.  The only way to manage the fear was to assume that best case scenario:  It was a fluke, and although we would likely never know what caused it, he would hopefully never do it again.

All in all, Ryder was put under general anesthesia four separate times in the course of 6 months.  He spent countless nights, in addition to daytime visits, at Cooks.  He knows that hospital in and out.  Through it all, he's been amazing.  Today, he is the exact same Ryder that he was pre-surgery.  In fact, he's better.  He gained 5 pounds and a couple of inches after that tonsillectomy, as the ENT had predicted.  As it was explained, with completely obstructive tonsils and adenoids, he was constantly deprived of oxygen and unable to achieve restful sleep.  And as it turns out, when you have plentiful oxygen and restful sleep you grow .  Ryder is a trooper.  He is my hero.  He is a fighter. 

He remembers very little about his surgery/PICU stay.  His subsequent hospital visits have stayed with him though.  He hates IVs and asks about them each time we go to a doctor.  He loves that he gets to watch Frozen when he spends the night at Cooks.  He also loves the unlimited popsicles and ice cream.  Every now and then, he will say something about his medical experience that makes me realize he remembers/knows more than we think he does.  But he's fine.  He's not traumatized.  He's a normal little boy.  I, on the other hand, am not normal.  Again, I am sure that Blake and other family members have been similarly traumatized but I will not speak for them.  I am traumatized.  I think I had legit PTSD for the first 2 or 3 months post-surgery.  I had constant flashbacks.  I still have them occasionally.  I'll see an ambulance on the road and I'll get an instantaneous image in my head of Ryder's little body posturing on that hospital bed.  Just a few weeks ago, Ledger started grinding his teeth as I rocked him before bed, and I was literally swept with fear and anxiety.  I'm changed.  I'm sad.  But I'm also proud and relieved and happy.  I'm much less scared today than I was a few months ago.  Each day with my strong, healthy Ryder is more bearable and more enjoyable than the last.  We are so lucky.  We are so grateful.

It's a story for another day, but Ryder's medical scare was not our only 2015 nightmare.  Within days of Ryder's release from the hospital, someone who shares blood with my father, someone who was raised under the same roof with my father, served him with papers.  He sued my dad.  That person made horrible, baseless accusations that were devastating to begin with but even more so because my family was grieving and terrified in the aftermath of Ryder's near-death-experience.  This person knew what happened to Ryder and still allowed his attorneys to serve my father on that date.  The epitome of kicking someone while they are down.  Because I am helping my father legally, I cannot discuss any of the details surrounding the lawsuit.   However, much of it is public record.  Suffice it to say that the Moses legacy is no more.  The family is broken.  Bubbie and Zadie are rolling in their graves.  This person chose jealousy and bitterness and paranoia and hatred over his family.  Over the truth.  Over humanity.  My dad is kind and generous and honest.  His character is being challenged.  He'll prevail but will be forced to pay crazy sums of money to attorneys to defend his name and disprove ugly accusations. 

This year has taken me lower places than I ever thought possible.  But I'm ready for 2016.  Ryder and Ledger and incredible.  They are kind, funny, good-natured, well-behaved, freaking adorable little boys.  Blake is my rock.  He makes me proud every day.  He keeps the family business afloat in the face of a nasty lawsuit, ignoring the attacks that have now extended beyond my dad.  Blake is being targeted too... It is simply another means for a desperate individual to try to hurt my father.  It's not about Blake and yet he must suffer too.  He holds his head high and works hard.  My parents and in-laws have suffered along with us and their support has been invaluable.

All the while, I know there are starving children in Africa.  There are parents that have actually lost their children in 2015.  There is terrorism.  There is war.  There is poverty.  And many people survive things more horrible than the things we experienced this year.  But this post isn't about them.  It's about me and my family.  Luckily, there is enough love to keep us strong.  2016 will be a better year.

The purpose of this post was to allow myself the cathartic experience of rehashing my family's nightmare with the hope of entering the New Year with a fresh outlook.  Here's to 2016!

 



 




Unsuccessful visit from the therapy dog

The "turnaround" day - Ryder sees the light

First Steps

Discharge Day

 

2 comments:

  1. Thank you for sharing this. I didn't know much of the details of this story. I have been crying more and more with each paragraph I read!
    I feel badly that I have been so detached from your Mom and Dad these past few years. They are very dear and special Friends that I will forever be THANKFUL for!! I let "life" get in the way.(and NOW I am in IDAHO!!!) I want you to know how much I admire your strength. I wish for 2016 and beyond to be a year full of health and happiness for Ryder and the whole Moses/Halpern clan. Much love always!!!

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  2. I'm literally in tears reading this. I'm so so sorry y'all had to go through all of this! Prayers for an incredible 2016.... y'all deserve it!! Miss you girl.

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