- Audrey, Malacia Mom
Maverick's Story: Supraglottoplasty Helps Treat Life-Threatening LM
Back in May, Maverick was eight weeks old and diagnosed with laryngomalacia. They did a scope but couldn't see much because of his severe reflux. So a month later they redid the scope after his medications 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 as soon as possible. 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 the 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 were about 20 nurses and doctors surrounding my little boy. All my husband and I could do were 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 tracheotomy.
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 four breathing treatments.
We are now in late October and we are still on a pulse ox and oxygen during sleep, while in the car seat, and 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, it 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 enough. You give me the strength knowing I'm not the only one!
When is a supraglottoplasty needed? Dr. Samuel Engel from Coastal ENT explains...