Benny the Brave
Please scroll and see “updates” in the section below! Benny needs our help again!
Original story post:
Justin and Emily Smith welcomed Bennett Oliver Smith into this world on March 18th, 2021. This brave boy has been diagnosed with chronic respiratory failure, dysphasia, laryngomalacia, prolapsed epiglottis, and severe obstructive sleep apnea. He’s on oxygen and is 100% fed through a gtube. With two other little ones to provide and care for, Justin and Emily are stretched thin. Right now, Benny is hooked up to many different tubes and monitors that are not mobile and requires additional constant hands on care on top of all the regular needs and demands of a newborn baby.
Having an RN provide homecare for Bennett would let Emily have the time and hands to love on and care for her other children while also getting a chance for a break to recharge. During the most recent hospital stay for Benny, their downstairs area in their home flooded leaving extensive water damage. This needs to be repaired and will cost time and money. Medical bills have pulled up on top of regular bills and they just have Justin’s income to rely on.
This family could use some of the love shown monetarily from their family, friends, and community and it helping to alleviate some of their strain. Any amount truly adds up, and the worth is greater than the actual physical amount. I have set up this gofundme for them and hope we can help help by donating or even just sharing about Benny the Brave.
Thank you!
Find his wishlist registry here: https://www.babylist.com/bennythebrave —There’s some medical supplies that insurance doesn’t cover, some adaptable clothing, some toys, and nursery items. Anything purchased here gets sent directly to the family.
Follow Benny’s journey: Facebook.com/bennythebrave21 
More detailed info from Emily’s post on Benny the brave’s Facebook page:
“Bennett was born 6 weeks early after I went into early labor and developed preeclampsia. I was already high risk for it so we knew it was coming-it was just a matter of when.
I had a 28 hour labor and at the end of it, my beautiful Benny was born with the cord wrapped tightly around his neck.
He seemed ok given the circumstances but his oxygen levels started to drop so they admitted him to the nicu.
He was diagnosed with a pnuemomediastinum (air trapped in the center of the chest around the heart) and he remained on oxygen for a few days.
It cleared on its own thank goodness!
All was well and he was a typical preemie.
We went home 2 weeks later.
He was home maybe 2 weeks before I started to realize something was wrong.
He was choking on all of his feeds.
SEVERAL times during a bottle he would choke until he couldn’t breathe.
Doctors told us to pace feed him, slow down the flow and that it was normal.
He also would gasp for air all the time while sleeping. It was so much that I wasn’t getting any sleep.
He made these high pitched breathing noises while sleeping, eating, he had the noisiest breathing, and would snore really bad.
Everyone just kept telling me It was normal.
Then he started having trouble breathing.
He was retracting, grunting, his nostrils flaring.. all signs of respiratory distress in babies.
We took him to the children’s hospital ER and the doctor said right away they would admit him for further testing because this was all very concerning.
He stayed in the hospital for 2 weeks.
Here’s what we learned:
Swallow study showed he was aspirating feeds.
They tried ultra preemie (extremely slow) nipples and he still was.
They also tried thickening feeds and he still did.
It was determined it was no longer safe to feed by mouth and an NG tube was placed in his nose for feeding.
A bedside scope showed an airway disease called laryngomalacia. It’s essentially a floppy airway, extra pieces of skin fall over his windpipe and obstruct his breathing and were causing the noisy breathing/snoring/and stridor.
He also had a CT scan, multiple x rays, an echo of his heart, tons of blood work etc to rule out anything that may also be causing his issues.
The sleep study was rough. He hardly slept, but when he did; it showed he stopped breathing over 20
Times an hour. He was diagnosed with severe obstructive sleep apnea and placed on 24/7 oxygen.
The surgeons then discussed with us wanting to scope his airway to rule out any other deformities and place a g-tube for long term feeding because this obviously was something that we weren’t going to be able to correct any time soon. We ultimately felt a g tube was the best decision for his overall comfort.
They put him to sleep and scoped his entire airway and they found a prolapsed epiglottis and the laryngomalacia, along with bronchitis in one lung (probably due to aspirating) so they flushed out his lung with saline. Then the surgery team placed his g tube.
After surgery he was in a lot of pain. More than we thought he was going to have. They managed his pain but he wasn’t allowed food for like 3 whole days. It was so hard on him and it hurt my mama heart so bad.
He finally healed though and we learned how to use all of the equipment before finally heading home.
It’s hard to not have a lot of answers after all that he went through. We were told
It’s probably developmental, that he may or not grow out of it.
Neurologist said if he starts missing milestones they may want to do something further like an mri or genetic testing but right now he looks good.
This is the start of a long road for him. He still needs oxygen, an 02 / heart rate monitor, g tube.
He will require feeding therapy, physical therapy, and OCcupational therapy.
We aren’t super sure of what his future holds.
But he’s happy right now and we will do our best to get him any kind of care that he needs so that he stays that way!
Thanks for reading and for supporting my boy. We love you all!
Benny the brave ❤️“
