Jason and Apollo…best mates.
In February we attempted to tube wean Apollo and that attempt failed. Next we attempted to simply lower the amount of formula and calories he was getting in his tube. In March and April we began giving him one can of formula (approximately 240 calories) at night. He was much less miserable, but was still losing weight. The dietician recommended that we begin giving him 1.5 cans of formula each night.
Yesterday’s visit to the doctor confirmed that he has grown in neither height nor weight at all this year, so 1.5 cans per night it is. We will monitor his growth, and increase to two cans if necessary.
I wish desperately that he didn’t need the tube just to maintain and gain weight, but those feels are tempered with thankfulness that we live in a time when tube feeding is possible.
More concerning to the doctor than his lack of growth, is the two videos I took in to show him. If you follow me on Facebook you’ve likely already seen the videos of Apollo snoring and experiencing sleep apnea (if not, you can view them at the end of this post). He has yet another referral down to Seattle Children’s Hospital, but I’m not sure yet if he will be seeing his pulmonologist, ENT or both.
During the ride in his car seat Apollo turned dusky and purple twice. It was terrifying. Both times, Enoch adjusted his head to open his airway, and he pinked right up. Neither time did he rouse or jerk awake, he just turned purple. If I had been traveling alone with him, I would have had to pull over and wait until he was done napping to drive him safely. The doctor recommended a travel pillow for the car as a temporary measure.
Apollo has had two sleep studies that have comeback “unremarkable” because he experienced very little snoring and no apnea during his sleep study nights. Before his last one in December 2013 his ENT said if they showed airway obstruction or apnea, he would likely remove his tonsils to open up his upper airway (he’s already had his adenoids removed) and do a bronchoscopy. But since it came back normal, no follow up was done.
As his doctor said yesterday, “and on it goes”.