What happened to Quint - Part One

Lots of e-mails, lots of questions, and so many prayers for our sweet boy.  Thank you seems to fall short – but it’s heartfelt.  We were covered by your love and concern the entire day.  And Quint’s surgery and recovery went so well.

Here is an explanation of what has been going on.  It’s long – so get your popcorn.  I wish I could reach through the screen and hug the mothers out there who have gone through this or might be facing this.  Since we’re still wading through his recovery process and post-op medication, we can’t truly tell yet what the results will be – but I can tell you, I have lots of hope, and that is carrying me right now.  Time alone will tell and I’m ready and waiting.

Quint had his tonsils and adenoids removed two weeks ago today. He also had tubes placed in his ears. Now, this is a common surgery and we didn’t have any real apprehension about it.  We had been planning this for months, as we slowly came to discover that so much of what Quint had been struggling with was tied to this surgery being successful.

Quint has been knocked down with many issues since the day we brought him home at 6 months old. For three + years, we’ve been treating symptoms. Each one, as they came up. I’m deeply regretful that I never was able to string them all together sooner. Here’s a snapshot:

• Recurrent Ear Infections (with perforated ear drums on several occasions)
  
• Chronic cold/runny nose/upper respiratory congestion and infection
  
• Low appetite
  
• Two episodes of severe croup
  
• Irritability
  
• Speech delay including the inability to say his own name correctly or count to ten
  
• High gag reflex/choking reflex
  
• Poor sleep patterns with inability to stay asleep/ Snoring & Sleep Apnea
  
• Hyperactivity
  
• Physicality and acting out

Quint trying to discuss and understand the reason for his hospital visit

Steps we took:

• We had to get a really thorough and well reputed ENT on board with us. We were very fortunate to find one of the very best in our area.
  
• We had to go through the normal process of elimination – several hearing tests, routine physical, blood work, exams, radiology reports and x-rays, etc.
  
• We had to wait for various insurance related issues to be resolved and for new coverage to begin in October
  
• We started Quint with a wonderful speech therapist twice a week
  
• When the results were in, we pursued getting this surgery with dogged PERSISTENCE – bottom line. We held on for dear life and pushed for the procedures 100%. You have got to be determined. No question.

This is not a comprehensive list – but it gives you a picture of what we’ve been struggling with. I read that list, and I’m so sad. Quint is such a wonderful and loving boy – and he truly lights up a room. But these struggles have compounded a feeling of dread we’ve had and have propelled us down many different paths to seek answers. Some of those answers never rang true with us – and we continued to search. Some resonated like a clanging cymbal. Those were the ones we followed after.

Namely, we were looking behaviorally first. And I want to say this to the mom’s out there who might have read that list and said “oh wait…that sounds like _______”.  We spent the past three years treating symptoms – and by that I mean: Quint would get a cold that would roll into an infection. We’d take him to the doc, he’d be treated with antibiotics, he’d improve, we’d move on. Quint would choke on a meal, we’d make sure he was fine – we’d move on. Quint would not sleep normally – we made exceptions and said “he just doesn’t need as much sleep”. He was hyper and bouncing off the walls constantly and we said “he’s a boy!” He was snoring, we said “he’s like his Daddy” (wink). He didn’t eat a lot – we said “he must be in-between growth spurts”.  Sometimes he ate more than we did – we decided that he was growing.  When he was irritable and short-tempered, we said “terrible two’s”….”terrible three’s”…. You get the picture. It all seemed situational. But the reality is, they were all tied together.  I’ll show you what we learned over the past few months; 

Recurrent Ear Infections (with perforated ear drums on several occasions) – 70% damage to Quint’s eardrums at infancy due to untreated ear infections and perforation in Ethiopia (and recurrent).  His hearing was terrible.  Our ENT equated it with being at 35,000 feet your entire life and also “being under water”.  He guessed that Quint had never heard a solid consonant sound since infancy.  This = Speech Delay. Irritability.  Not being able to communicate properly.  

Chronic cold/runny nose/upper respiratory congestion and infection – Quint’s tonsils and adenoids were abnormally large.  The tonsils were so large they were touching and almost blocking the airway.  The adenoids were so large they had completely cut off the airway through the nose and were growing down into the mouth airway (which explains why at 4, he could never blow his nose) .  The ENT had never seen anything like this in his entire career.  The blockage was so bad between the adenoids and tonsils, that he stood with us after surgery shaking his head and saying repeatedly “I don’t know how he was breathing…it’s just unreal that he’s OK…he shouldn’t have been able to breathe with that situation in his nose and throat.  I don’t have any idea how he was doing it.”  Quint's adenoids and tonsils were so large that barely any fluid, once retained from a cold or virus, could drain properly.  This pushed the fluid out through the ears and caused serious buildup, often causing the weakened eardrums to re-perforate.  He maintained infections and also a strange yeast that had grown over his tonsils and adenoids causing him to stay sick for long periods, even with heavy anti-biotic treatments.  His ears retained fluid most likely at all times.  

Low appetite - Because his tonsils were so large, he could not swallow properly and resisted any kinds of meats or heavy items.  Also, chewing and swallowing often came at the expense of breathing, since his nasal airway was closed off.  Think of what a chore eating is when you can’t breathe through your nose – it’s tiring because you’re constantly having to stop to breathe through your mouth.  Makes more sense to keep eating minimal amounts as to be done quicker.  

Two episodes of severe croup – with a tiny airway through his mouth only, and croup – which is an infection of the throat, this caused Quint’s severe reaction and trip to the ER via ambulance.  He literally could not breathe.  What little airway he had, was being closed.  Our ENT was quick to point out that one episode in the coming months of Strep Throat could have been fatal for Quint.  His airway simply could not have handled any swelling.  Of course our reaction was to be completely overwhelmed followed by complete gratefulness that we were finally in good hands and getting help. 

Irritability – Struggling with being sick all the time, not being able to hear/breathe/sleep well or communicate properly – would you be anything but irritable?  Me neither. 

Speech delay including the inability to say his own name correctly or count to ten - Poor baby has never heard properly since infancy.  How could he say the “Q” sound?  He’s been under water! 

High gag reflex/choking reflex - With tonsils so large they were touching, it’s no wonder he constantly choked on food and drinks. 

Poor sleep patterns with inability to stay asleep/ Snoring & Sleep Apnea – Difficulty with his air passages caused snoring, which caused sleep apnea.  His ENT guessed that Quint had never (as in, ever) hit REM sleep patterns his entire life.  He is exhausted. 

Hyperactivity - right along the lines of exhaustion – the child who does not sleep, tends to be hyperactive while awake.  This is the body’s way of overcompensating for being tired.  When you’re up – you’re UP.  When you’re down – you’re out.  This was very true for Quint.  He would wake up running circles around the rest of us – but the minute he was restrained in his car seat, he would crash.  Their body over-compensates when they are awake, so they go-go-go and when they are forced to sit still, they completely shut down and fall asleep.  Quint. to. a .T. 

Physicality and acting out – Quint’s physicality (overt) and aggression has been tied back to his inability to communicate well.  Which ties back to his ears.  Which ties back to his inability to drain mucus properly.  Which goes directly to his tonsils and adenoids being too large and needing to come out.

 

Post-op hospital rest with Captain America

So there it is.  Several times we were told “it’s amazing he’s ok”, “we don’t know how he was breathing”, “he’s an amazing boy”, “he shouldn’t be here…” Nobody knew or realized how bad off Quint was until the surgery was underway.  We didn’t know.  His pediatrician didn’t know.  His ENT didn’t even realize it.  Then it became clear all that he had been up against, and a routine surgery went out the window.  The surgeon said to me with a great sigh, “when I got in there and saw what he had been fighting his whole life, I realized this could have gone south very fast for him…and all I can tell you is that he’s amazing…he just is”. We might be biased, but we tend to agree.  Yes, indeed.

Back at home, 12 hours post-op.  AMAZING recovery.  AMAZING boy.

More to come about how I’m feeling post-op.