Amazing the Doctors
Our little champ is amazing the docs a little more every day!!!!! They didn't really want to mess with his vent settings (as we probably mentioned in previous posts) but being the ever soooo slightly stubborn parents/people we are and knowing how strong Porter is~ we pushed for some trials with the vent. In the past, they have done pressure support trials where they essentially take away the set amount of breaths that the vent makes Porter take and it allows him to take whatever breaths he wants to take. This is good but doesn't really truly assess whether or not he can breath without the use of the vent so they, at the request of Steve and myself, agreed to do what's called a trach collar trial. When they do this, the respiratory therapist takes Porter completely off the vent and puts what looks like a little mask over the end of his trach and that circulates humidified air which keeps his trach site moist. Well~ the first time they did this they only let Porter stay off the vent for 30 minutes but it was interesting to hear everyone walking by saying - wow~ he looks more comfortable off the vent. Well that's what we've been saying! The fear is that being off the vent will cause a lung to collapse but so far he has done great. He lasted 2 1/2 hours twice yesterday but the doc today only wanted him to go for 2 hours at a time. Maybe tomorrow they'll let him go longer. This gives us a little peace of mind for when he does come home that we can disconnect him from the vent to give him a bath or to put him in his stroller for a walk without him dropping his sats (o2 decreasing, hr decreasing etc). Porters progress has ABSOLUTELY thrown the doctors for a loop. When we were talking to one of the pulmonologists about aggressively weaning Porter from the vent she said~ whoa, slow down, this kid shouldn't even be here so lets take it slow and let him show us what he can do. When she said Porter shouldn't be here- aka alive - it made us both take a moment and catch our breath. With how well he's doing, sometimes we forget (which we're glad about) where we started almost 5 months ago. He is truly a miracle.