Long Day at Vent Clinic

Every 3 months we go to vent clinic for a check-up. They asked us to show up 2 hours late this time because they had a full list of people coming (it's first come first serve). So, when we arrived at 2pm, clinic had not even started yet and they did not have a room for us. We waited about 30 mins before the first patient was done & we were able to get a room. Vent clinic is always the same. They give you paperwork to fill out & update. A nurse comes in to get info & does vitals. A tech comes in to weigh & measure her. The x-ray team comes in for a chest x-ray. The "dynamic duo" (the title we gave to the ladies who take blood each time) comes in to prick Autumn's finger for her blood gas. We have known them since Autumn was 2 months old in the hospital there. :) A dietician comes in to talk about her diet & let us know how things look. We then wait & wait & wait for the drs to make the rounds. We were last today since we were asked to come later so we were finally done at 5:30pm. Usually we bring lunch with us but since we came later, we wanted a snack or dessert. The vending machine only had healthy snacks & diet drinks. What?! Apparently Baylor has gone healthy so next time I will have to remember that. The drs told us about a cupcake place nearby so after clinic that is exactly where we went. :) Honestly, vent clinic is always long but it really does not bother me. I love the drs & staff & since we lived there seeing the same staff/drs everyday for 2 months, it feels like a home away from home. :) They are the most supportive drs we have & probably ever will. They know us so well & they really do care about their patients like no other drs do. :) I always leave convinced we are their favorite patients because that is just how they make us feel. Ok, back to the clinic details. Everything looked great! Blood gas good, chest x-ray perfect, Autumn is growing on target so no changes in feeds. She 's 33 inches & 26.7 lbs. We are just smooth sailing. They decided to even cut back her Zantac meds to once daily. They can't believe how little medicine she needs & how the only nebulizer meds she gets daily is her Pulmicort. Yes, I have a rockstar daughter. ;) The drs really want to be able to get her off the vent but until her brain is ready we are stuck. They did say we could try doing CPAP with a face mask if we got her trach out but we all agree she probably would not keep it on & having the trach makes it easy & it's what she knows. I do believe one day she will be trach free. They will do another sleep study in 6-12 months when she grows a little more & we will see if the sleep apnea has improved. Praying as always!!