Shake it off is a motto we have adopted over the last week.   Last week to the day our night nurse called off for potential weather (which was  a VERY MINIMAL CHANCE) Despite our offering of our guest room should she get stranded she still called off.  Alas ~ we didn’t get a drop of rain, sleet, or ice.  To top it off we didn’t have night nurses that Saturday or Sunday night and ~ tonight the same nurse who was supposed to be here last Thursday  called off AGAIN.   Well~ for those who are on FB and saw our post tonight~ we took the high road and instead of bitching~ we had a dance party with our disco light.  Oliver was super excited and Porter LOVED watching his brother dance and listening to the music.   I literally just opened iTunes and started playing samples of songs and our house came alive.  However~ with much dismay of our current home health company we are bringing on board a second home health company to pick up the slack.  The person who does our schedule asked (last week) that I give her a week to fill the schedule before I reach out to other companies and the week is up and so is our patience.  We CANNOT live on maybes or hopefully or waiting to hear back~ we need definites.     We’re about to ask for the wages of the nurse that calls off ~ might be out of line but at the same time they work a 12 hour shift  and can go home and sleep.  We “pull” a 12 hour shift and continue to plug through the next day as best we can.  There is no sleep, no reprieve from Oliver who craves our attention, the dogs who need attention.  We don’t get a break.   It takes a lot of guts for the nurse who called out last week and tonight to tell me yesterday morning as she’s leaving how tired she is and how little sleep she’s gotten.  It was all I could do to not give her a piece of my mind.  I did call the office and suggest they educate their staff to not complain to a family who they called out on about how tired they are.  We could care less.  What has happened to work ethic?

Porter had a bunch of appointments today at UNC.  He saw Pulmonology, Urology, Airway folks, social worker, transplant coordinator, PT, developmental pediatrician, the nurse practitioner, got a trach aspirate, and a chest xray.  We left the house around 11:30am and got home around 6.  Porter was tuckered out but he was a trooper all day long.  Our nurse today was fabulous as usual. She is always on top of things. 

Pulmonology decreased Porter’s vent settings quite a bit and will be discussing him at their conference meeting Tuesday about doing a swallow study to see what things speech can start working with him on as far as getting him to take food by mouth.  The developmental pediatrician doesn’t see any reason why he shouldn’t be able to feed by mouth at some point down the road.  It will take some time but not out of the question. Even though it was a LONG day – Porter was a trooper with all the appointments and fell sound asleep on the way home.