Friday, May 30, 2014

The Scariest Acid Reflux Diagnosis

I never knew how scary Acid Reflux can be.  I thought it was just like really bad heart burn.  Then it happened to Maxx.  He didn't have any issues with this as a baby.  That's why it came as such a shock.

It was the night of our 15th anniversary we had just settled in for the night.  When suddenly I hear a choking cry come from down the hallway.  I turn terrified to my husband.  It's Maxx again. He was gasping and clawing again.  We held him as we tried giving him a breathing treatment.  He was spitting frothy/slimy spit and wiping his mouth as if it was disgusting.  We believed it to be another asthma attack and followed what the doctors told us.  This time making the diagnosis a permanent part of his life.

I watched in horror as he struggled and screamed. Slowly his lips started to turn blue.  This was the moment I called for an ambulance. The wait for help felt eternal.  Before we were even in the ambulance the paramedic trainer said "oh yeah this is just another croup case."  The paramedics tried to make me ride in the front as Maxx was strapped in the back for the ride.  He lost it as soon as I disappeared from view.  I ended up riding the 10 miles strapped on the gurney in the back of the ambulance holding him. I argued throughout the ride that it just sounds wrong. There was a weird wheeze but no cough.   She told me that I didn't know what I was talking about and that she was the medical professional.  It was hard to silence my mom brain.  It screamed at me that this diagnosis was wrong.  I've been through croup, whooping cough and so many other childhood illnesses between my 5 kids. Croup would have responded to his breathing treatments.
 
I'll never forget sitting in that chair next to his hospital bed as he took breathing treatment after breathing treatment to get his breathing normalized.  Terrified that it was not working and they were not doing enough to help.

Maxx ended up being admitted to the Pediatric ICU.  I sat there as my normally active kid just lay there listlessly.  Pulmonary specialists were called.  They now said he may have been admitted with croup but it was not croup, because it was not responding how it should to croup medicine.  The wheeze was too high in his chest and he had no cough. They were now considering an asthma diagnosis.

With nurses in and out constantly taking note of his vitals I explained to Maxx that they were checking his numbers.  The numbers said how sick he was and when he got better numbers we could go home.  One visit late in the night as the nurse was adjusting tubes. He tilted his head back to watch the monitor with his "numbers" that was hanging just over his head behind the bed.  It was almost as if magic.  His horrible wheeze disappeared.  Before the nurse could rush out I pointed this weird phenomenon.  She had a confused look on her face and said to me "that's weird."  I demanded to see a doctor in his room now.

The doctor arrived and asked me to repeat what had happened as he listened to Maxx.  Sure enough the wheeze was gone when he looked up but back when he sat normal.  The doctor was stumped so he then called in the Pediatric Ear, Nose, and Throat specialist.  With the scope still down Maxx's nose the doctor announced, "Look at those acid burns, he has acid reflux not breathing problems."   The acid reflux had made his vocal chords swell to the point it was causing difficulty breathing.  This was long term damage. (even his tonsils had burn marks on them) I asked if this could be what was wrong when we were at the hospital 6 months before.  He said it was most likely the problem.  Not only was it missed by the hospital we went to for treatment but also by his pediatrician at his follow up appointment.

Now Maxx knows what food he can't have.  I've helped to educated him on what causes him to make excessive acid.  He refuses to eat chocolates, because as Maxx explains they make his tummy hurt his throat and make him not breathe.  Nothing like a scary trip to the hospital to scare your away from chocolate for life.  He is now on a daily dose of prescription Zantac.

I never knew this was even a possibility with Acid Reflux.  I never knew it could be so severe that it could actually swell his throat closed.      

The evil of Asthma... or is it?

One night in the early morning hours I lay there in bed struggling to force myself back to sleep.   Then I hear it... Maxx has woken up coughing this horrible cough. ( unlike croup or whooping cough) he crying as if in pain.   I rush to his room to find him clawing at his throat screaming in terror now.

I rush Maxx to my room and get a nebulizer treatment started.  Believing this to be another episode of something in  This isn't his first time using a nebulizer.  (Bronchiolitis in the past). The difference this time.. He wants nothing to do with it and starts screaming louder.  As I have him sitting in my lap he is biting at me, scratching and starts to spin like a gator.  I wake my husband in the worst possible way by yelling "Help me!" Over our child's screams. ( how he slept up to this point I don't understand)

I watch as my husband calms him to take a treatment.  My poor  husband is an old pro at breathing treatments having had them himself from the time he three.  I see the guilt in his face as he blames himself for passing this lung disease to our boys.

We rush him to the hospital.  On the way there his breathing calms, I start thinking they will say I am overreacting and send us away.   His breathing is still not normal, with a strange rasp.

I carry him into the emergency room.  As I approach the nurse station tears start streaming down my face as I remember what it felt like for me having my first asthma attack at the age of 12.  I thought I was choking on a chip during lunch while at school. One minutes I was coughing, the next I had blacked out and my friends were helping me to the nurses office as I clawed at my neck trying to get air.

As I approach the desk, I blurt out, "Please help my son.. I think he's having an asthma attack."  The three guys at the station take one look at me and rush us through check-in.

I'll never forget the hours after that with the many medical professional standing outside that glass walled room staring at us like a specimen on a slide. Not talking to us, for the most part just scaring the crap out of me.

I look back now and wonder is it my fault they diagnosed Acute Asthma attack since that is what I came in crying.  Why had no one looked in his mouth or at his throat?  If they had looked back then would they have seen the damage? It was very visible once we finally got our true diagnosis 6 months later in an even scarier incident.  Why had his pediatrician not seen this at his checkup between these incidents?  My faith in the medical community is not as strong as they once were. It just feels like educated guessing.  Too many times it's without even finding out all the facts first.

Thursday, May 29, 2014

From one that was left behind

Suicide is never the answer.  It is the most selfish thing to do. It leaves so much pain and anguish behind, more than you could ever imagine.

Today I had to tell my kids that you were gone.  I couldn't tell them that you chose to leave, the words just wouldn't come.  I watched as the safe little world I surrounded them in burst into a million painful shards.  You were a person my kids loved.  I pitifully explained that our time with everyone is a gift that needs to be treasured. Even though you didn't treasure your own life enough to stay.

My sister fell in love with you after many years in a a relationship I worried would kill any hope in her heart for love.  Looking back I remember listening as you both talked about a forever together.

Today I held her as she screamed out her loss and anguish.  I listened as she blamed herself for your self-seeking choice.  In that moment I hated you with every part of my being.  You left us behind to pick up the pieces of her that you had shattered.  This gentle soul that does not like to see conflict or pain, who roots for the little guy and always finds a reason to like someone.  You didn't even protect her from your final selfish choice and left her to discover what you had done.  Left her to be the one to make those painful calls to your family, because you chose not to be strong enough to cry out for help.

You promised her a future that held great promise.  Today she ends it with no home to go to because your family would not let her stay in the home you both shared.   No love to cradle her in their arms and tell her that the world will be ok again.  A future uncertain and a heart in anguish.   You promised me you wouldn't hurt her and yet you destroyed her whole world today.  You were her whole world, because of that I had let you into mine.  I say FUCK YOU! For all those left behind to pick up and keep moving on.

I stand today guilty of having those thoughts myself in the past.  After seeing the aftermath of suicide I am angry at myself for having even considered it as an option.  Thankfully I got the help I needed from my support system. I leaned too close over that cliff of despair and they pulled me back away from the edge.

Suicide is never the answer.  If you or someone you know is having thoughts of suicide, please get help.  Do not brush off comments by co-workers no matter how flippant they may seem.  You could be the one person that heard the warning.

 There are many ways to get help.  http://www.suicidepreventionlifeline.org/

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