Back in May Maverick was 8 weeks old and diagnosed with LM. They did a
scope but couldn't see much because of his severe reflux. So a month
later they re did the scope after his meds were adjusted. It showed
severe LM. We were always concerned about his breathing because he would
pause and would take forever to catch his breath. I took numerous
videos and took him to his pediatrician too many times to count.
I
stayed up all night listening to him struggle to breathe there were so
many times I had to pick him up to take a breath. So ENT decided to do a
Supraglottoplasty asap. On July 2, 2014 he was scheduled for surgery.
They had a tough time tubing for the surgery. The doctor then came out
and said everything went great. They would let us see him as soon as he
starts waking up. It was he longest 30 minutes of my life.
Finally they
called us back and I got to hold my sweet boy, but then I noticed he was
starting to have a nose bleed. The nurse took him from me and put him
over her shoulder to lay him down then blood started pouring out of his
little nose and mouth. Within seconds there was about 20 nurses and
doctors surrounding my little boy. All my husband and I could do was
just watch in horror as our little guy was struggling. It took them an
hour and a half to stop the bleed. As soon as the doctor was prepping to
take him back to the OR he stopped. It was the longest night of my
life. He was so uncomfortable. The next day was far from easy the added
swelling and what they believe is airway obstruction caused him to quit
breathing for them 3 times. He would get upset and wouldn't be able to
catch his breath and would go limp and blue. They put a neck brace on
him to keep his tiny jaw from falling back and closing off the airway it
worked. We were seconds away from getting a trach.
He would obstruct
in his sleep and would drop his oxygen level way down into the 20s and
40s. They started him on oxygen and positioning him right and it has
worked wonders. Along with 4 breathing treatments.
We are now in Late
October early November and we are still on a pulse ox and oxygen during
sleep car seats and when I can't sit and listen to him. We hope to have
him off everything by this spring. But it all depends on our little
hero. We go for a sleep study in January this will be his third. He's
been doing amazing and we are so proud of him. Those were the scariest
moments of my life and it took me this long to be able to tell you our
story.
I can't ever thank Coping With LM, Inc. enough.
You give me the strength
knowing I'm not the only one.
-Maverick's Mommy , Audrey
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