Chuck (40) and Apollo (16 months)
Best part of our visit to see the pulmonologist at Seattle Children's Hospital?
The doctor is ordering a bronchoscopy!
After six months of relfux medicine his stridor is cleared up (except for when he eats solid food), his voice is back to normal (so presumably his voice box and esophogus have been healed of the damage the relfuxed caused). And he said the bronchoscopy needs be done "sooner rather than later" but isn't an emergency.
He still works too hard to breath, retracts even when resting (it was visible while he was just sitting on my lap) and burns too many calories breathing. The doctor once again said his trachea is narrowed and it's equivalent to breathing through a straw.
Best part about Apollo's weight?
He's gained two pounds in the last four months and is back on the growth chart for the first time in 8 months! He is now in the 7th percentile. Last time he saw the pulmonologist he was in the .05 percent.
The thought of continuing the feeding struggles for another week/month/months is daunting. It is a full time job trying to get enough food into him for him not to be hungry. It's even worse trying to get enough food into him for him to grow. The pulmonologist said if it weren't for the high fat diet and our effort, he probably wouldn't be growing. AT. ALL.
Most Ironic part?
The pulmonologist is referring Apollo back to the ENT he saw in May to do the bronchoscopy. He said he could do the bronchoscopy, but he can't do the surgery to fix the problem. The ENT can do the bronchoscopy AND do the surgery to fix the problem. Hopefully this "referring" doesn't add too much time onto the whole process.
Best part about last night?
Apollo was only up once!
It's because he gorged himself on french fries and chicken nuggets on our way home from the hospital. Being confined to his carseat meant he could eat, slowly and had nothing else to do. So he ate for an hour and then slept a five hour stretch before he woke up hungry.
Fries and nuggets are obviously not an option for every night, so we continue to search for some elusive high fat food that he will actually eat before bed.
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