Tuesday, April 12, 2016

When I Feel Less Than Brave

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Noah is really sick.  And by really sick I mean he's the sickest he's ever been in his entire seven years of life.  It's not something that it an easy fix this time.  Not a simple ear infection.  Not a head cold that moves to his chest.  A really violent vomit bug hit his little brother 2 days before his 5th birthday.  Likely something he picked up on the playground while Noah was at therapy, or at swim school where lots of parents think it's acceptable to bring in their sick children or siblings for class, or at the hair cut salon that parents take their kids too when they are out of school ill, so he'd look so sweet for his 5th birthday pictures.  My anger for parents who take their children out in public places on purpose when they are sick is heavy.  They have no concept of what that potential danger is for my sweet fragile Noah who is at home, in a bubble of sorts trying to stay well.  Parents casually do it all the time, without a second thought.  And each time it happens I wish I had the courage to tell each parent how crappy of a decision that really is.  But I'd be starting confrontation with strangers daily.  They will never understand why it's not acceptable not to keep their children or themselves for that matter home when they're sick.

Luke's illness came on strong and heavy.  Without warning I turned my back to realize our tan carpet was bright red from a Little Me Tea Drink.  I thought perhaps maybe the drink upset his stomach since he reached for it before breakfast.   I had to take skills exams that morning to stay current on my CNA license to care for Noah.  I had hoped to return to a well child, only to find that his vomiting had increased ten fold and that he was now unable to control it, stomach bile and acid flowed from a tiny body that had a stomach with no contents, and Luke lay lethargic and unwilling to verbally communicate other than using his head to shake yes or no on the bathroom rug.  I sat and prayed for the child who was sick and for the child that I prayed would not be afflicted by this illness.  Deep down I already knew my fears would come to light. 

Luke showed some improvement 48 hours later, so I assumed we had turned the corner.  I felt a sense of relief for the typical child that was strong, healthy and able to fight this germ quickly.   My relief quickly turned into me running fast to the bathroom vomiting uncontrollably for six solid hours.  Severe morning sickness pales in comparison.  Followed by Luke and I shedding any bodily fluids our bodies contained.  I lost seven pounds in 24 hours, Luke lost 9 pounds in 48 hours.  My joints ached.  Each of my toes felt like pins when I walked, my knees felt locked and I just wanted to huddle in a corner and not move.  Chris had to stay home from work to assist all of us. 

It was 11pm on the button, I had finally stopped heaving into the toilet and had just put my head on the pillow when I heard Noah's monitor alert me to the fact he was throwing up violently in bed and struggling to breathe.  I rushed to him, but he was face down in a massive puddle of vomit.  His eyes and eyelashes caked, his head soaked, he was scared, disoriented and frightened.  I heard him gasp multiple times.  I knew what it meant.  I knew what was happening.  He was aspirating in his own vomit.  It kept coming - every 15 minutes until 9am the next day, each time he cried and inhaled more.  Yet, I tried to keep focused thinking perhaps since he was coughing he was able to protect his airway.  

I thought maybe he was improving as the following morning he was able to keep liquids and food down, but it was apparent that he wasn't just going to recover easily this time.  His fever climbed to 102.  His right lung sounded questionable and x-rays were ordered.  No easy feat for doing x-rays for a child like Noah who can't hold their arms above their heads or sit independently or lacks in head, neck and trunk control.  It takes two people including myself to attempt to position him just for a 10 second x-ray. 

Noah came home with an aspiration pneumonia diagnosis, antibiotics to try to fight the infection.  Noah is so weak that I dug out the baby bottles again, to make it easier for him to keep hydrated well without having to work as hard, his every whimper and whine tugging pushing every panic and fear button that I have.  The combination of alternating ibuprofen and acetaminophen broke the fever, but he still is very floppy, tired and irritable.  His breathing sounds cloudy and slightly distressed.  Saliva collecting creating a white tongue likely in an effort to soothe his raw throat.  Laying down his oxygen saturation drops so I have to keep holding him in my arms.  Noah has likely 18 hours or less to show improvement or he's likely facing a hospital stay.  His doctor seemed confident in my ability to get Noah to turn the corner, I'm still frightened if I can do it this time.  Vomit aspiration is really serious.

And then there is this huge rush of feelings; no one understands.  No one could possibly understand what a special needs parent experiences when they have a child that could die as a result of a common illness.  The gravity of the emotions are so intense.  I put on this brave face... but I'm not at all brave.  I feel so scrambled in the inside.  Mechanically I function like a well oiled machine - doing what needs to be done.  Checking on him every 10 minutes in the night, checking oxygen saturation levels, his heart rate, his difficulty of breathing, monitoring secretions, re-positioning, trying to find a way to make him stop crying and whining in agony.  I'm not sleeping.  I don't dare sleep during this.  Keeping up on laundry is simply impossible.  I have one child who cannot voluntarily stop bowel movements or his vomit, and another child who can't throw up in a toilet or a bucket and only has the floor and us holding him for any kind of assistance. I lacked spare sheets and and Noah's sensory issues shoot him to the moon to have plastic backed chux anywhere near his face.  Making him comfortable a challenging effort. 

And then I read Glennon Doyle Melton's blog post from Momastry today, and felt like it was acknowledgment from what I'm feeling and experiencing at this very moment.  That reassurance that someone out there "gets it."  There are times when I feel like I'm on so isolated from the rest of the world and that no one would ever give this side of a very sick special needs child a second thought.  That my heartbreak goes unnoticed, my fears disregarded, my fight for my child at all costs minimized.  I'm pouring every ounce of human effort into Noah.  When he's sick or not sick.  I eat and breathe and sleep the care-giving needs of this child.  I am nothing without my role in his life.
Photo Credit: Glennon Doyle Melton: Momastery
The acknowledgment that Glennon Doyle Melton gives to parents like me makes me feel like sometimes it is possible for someone who isn't walking this journey can try to understand and give us credit for our relentless and ferocious love and complete dedication to our children no matter the cost to ourselves.  And reminds me that someone out there salutes the warrior I get up every morning trying to be.  You can read Melton's post here

I am trying to be brave...

Prayers for Noah's speedy recovery from this illness is welcomed. 


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.