12.21.17 Wound VAC33

Not too bad of a day overall. Only one episode of choking and vomiting, which only happened after we had stopped draining her stomach. She was fairly distressed for most of the time once we stopped. She also has needed to be cathed all day, but barely produced any urine. We are also still waiting on the second half of her cecostomy flush to be expelled... 9 hours after we originally started it. Otherwise everything was stable. 

Our plan for tomorrow is to have her PICC line removed, to meet with her GI specialist, to fill her medications, and to move her to the home wound VAC. If those things can all be accomplished in a timely manner, we will try to get her discharged tomorrow. That might qualify as a minor miracle, but I know the team is trying their best to get that done. Otherwise, hopefully, Saturday morning. 

At this point, one of our nurse practitioners from the ortho team(who have all become friends at this point) plans to come to our house on Christmas and New Years to change the dressing. Which is unheard of, but insurance is okay with it. They have set us on a Monday/Thursday schedule, but due to holidays, there won’t be anyone in clinic to change it. We’ve been pretty blessed to get to know the whole team of quirky and fun ortho NPs. There are also a few nurses that have been major advocates for us. They are the only thing we will be sad to leave behind when we get out of this place. 

Maybe, one day really soon, we will be able to sleep in our own bed, make our own food, take real showers, sit with our boys reading books on our own couch, and put our sweet girl to bed in her own room. And sleep and sleep and sleep... and sleep.