G-tube. The day has arrived.

Well Gavin had his swallow study yesterday. They noted that he has insufficient suck/swallow. He has deep laryngeal penetration on all flow levels and consistencies, and aspirated on all flows faster then level 1. They suggested that we may need to "consider alternative feeding methods (other than oral) for meeting nutritional needs and efficiency of feeding."

What they were dancing around ever so politely was that Gavin was needing a feeding tube, which we have tried so hard to avoid. They stated that we are at a critical fork in the road. We could continue down the path we are on and potentially and subsequently compromise his respiratory system and subject him to chronic illness or we could surgically place a feeding tube into his stomach for liquids and still continue to do oral feeds with solids or controlled bolus's. He passed with flying colors on solids because his neuro-motor control is stronger. The liquids he's drinking are seeping into his lungs and he doesn't/cannot cough to expel them. Essentially he is drowning on dry land a little each bottle he drinks.

They said absolutely no water or thin fluids via bottle or sippy cup. He did excellent with pudding/applesauce/banana/and pb&j while we were there. The attending physician just said that consuming solids would tire him out too much to consume fluids. They recommended only offering the Pediasure in a level 1 nipple *but with fatigue he has at risk for aspiration* until we come up with a plan. So today we set the gears in motor. I contacted the ordering physician, which was his ENT, who said at this point it isn't a structural issue he can fix surgically but one we would have to refer to our general pediatrician to follow up on. I placed a phone call to her nurses, and tomorrow we should have a plan. There aren't really any excellent pediatric GI surgeons in central Illinois, as it seems we live in a pediatric medical dessert, so we will most likely have to go to St. Louis Children's. We still have to follow up with Gavin's Urologist about his scrotum/testicular surgery and schedule his eye surgery. We are going to try to do some combination of them so he only has to be put under once or twice but I just don't want to overwhelm his body too much to compromise his ability to heal efficiently and without infection.

It is the right step for us at this point. Gavin hasn't gained any weight in almost 3 months. Gabe is now up to 27 lbs while Gavin has been hanging tight at 22 lbs. He is also only meeting 50% of his fluid/nutrition needs daily now because drinking the pediasure is either becoming too painful or he is becoming disinterested in drinking 5 vanilla pediasures a day for his fluid needs and then being too tired to consume food.

I will update as soon as we have more concrete information.