Jackson's story began at birth. He was born pretty quiet. 'An underdeveloped voice box' we were told in the hospital. Then he started snorting all the time and sounded extremely congested. He was admitted to NICU for observation, where nobody checked his airway. They did diagnose him with reflux but at the moment it wasn’t too bad because I was nursing.
After discharge, we had his follow-up appointment in two days. He was one week old. From that time, at one week to seven weeks old, we went to different doctors multiple times a week and to emergency rooms as we genuinely believed he was fighting for air.
He is the only newborn I have ever seen breathe through his mouth.
His congestion was horrible but we were told the usual, babies have small airways, he must have inhaled fluid during birth, babies breathe loud.
All in all, no doctor had any concerns.
Though while laying completely flat his oxygen would drastically drop and he would start gasping for air. So his father and I took it upon ourselves with the support of his insurance to self-refer to an ENT.
Dr. Seth Linker (Tunkhannok, Pennsylvania), was a Godsend. Our first breath of fresh air.
He was someone who didn't even listen to me but informed me. He suspected laryngomalacia right away and preformed an in-office scope and sure enough, he had his proof. My son was instantly was prescribed medication for reflux, as you all know reflux goes hand-in-hand with LM. Dr. Linker chalked up the congestion mostly to reflux and then prescribed my son with a home apnea monitor as we both suspected sleep apnea.
The first night we realize how bad his apnea was. And within a few days on Zantac, the congestion went away.
Jackson seemed normal from that point on, except for one big problem.
RESPIRATORY DISTRESS.
At 130 days old he had spent 78 of them sick. He was constantly in isolation in the Pediatric ICU. At three months old, in PICU I pumped the last of my milk. Due to stress and nonstop living in the hospital, apart from my other child took its toll and my supply vanished.
That's when the trouble really hit. He went from being sick all the time to screaming in pain, arching, and showing the worst of the worst reflux symptoms. We tried everything. Every single H2 blocker and PPI. We did combinations and piggy-backed them, nothing worked.
Of course, reflux flares cause laryngomalacia to be much worse.
We were in PICU for an ALTES (Apparent Life-Threatening Event Syndrome). If it weren't for his apnea monitor I would have lost my son after an ALTES because I couldn't wake him. It was a fight to get him barely breathing until making it to the local hospital where he was then transported back to the Children's Hospital a few hours away.
After doing a 24-hour pH probe study we learned just how severe his reflux is. Right away his doctors all wanted to do the Nissen fundoplication surgery. We of course, were not jumping towards that idea.
We decided to try the only medication we hadn't tried yet, Nexium.
Again it wasn't working and I was getting desperate to help him.
I was referred to an amazing reflux group on Facebook, where I learned so much about severe infant reflux. We significantly upped his PPI dose to proper dosing for severe reflux and got into an amazing gastroenterologist five hours away from us.
We learned basically of his problems were fed by the reflux and once we controlled it, life for us changed.
His airway is healing from acidic damage, he recently outgrew laryngomalacia which is what his ENT said would happen once we controlled his acid.
He hasn't had any ALTES and no apnea. He has had his first cold that didn't require a hospital stay, we were able to handle it at home.
We are the strongest moms I know!
Comments