So they sent Sean home with a pump that is super easy for him to crawl around with if he has small feeding bags and a neat little backpack called a super mini. On our way home Friday I discovered they sent us home with a HUGE TPN bag instead NOT something he can carry around. So I called them and they said they would overnight a bag for him to be able to carry around. We got the bag on Saturday it is a fanny pack/ADULT purse! So we made the decision to start his feeding a little closer to his bed time and run it later. It required changing his feeding times but it didn't go so bad and we also figured out how to tolerate the 1200 ml bags until they can send us smaller ones. The first night we put it in the TPN bag and it alarmed all the time because the bag was to big and it kinked, now since we are just hanging it on the IV pole no alarms. It is not a long term solution though so I will be on the phone with Walgreens on Monday to make sure they send out the RIGHT stuff!
Next week is going to be super busy.
Monday- Pediatrician- WEIGH-IN!! Super excited since thanks to the pump his intake of 15-18oz has gone up to almost 27 oz woo hoo!!
Eye doctor in the afternoon
Tuesday- ENT (follow up to the bronchoscopy) and Orthopedist (hips and rib cage)