Julie is currently getting her last neb treatment inpatient. We are finally getting out of here. It seems as though ever since they pulled the chest tubes, her progress has been a full sprint. Success doesn't come without pain however. Last night I ended up coming up here around 3:00 am because Julie was in such excruciating pain that the combination of Lortab, Hydrocodone, and iv morphine couldn't even touch. After about an hour she had the thought that it might be pressure from her bowels. Within a few minutes of taking a couple of laxitives things started moving down there and she was able to get comfortable. It's a sober reminder of how much healing still needs to occur.
Julie's CF pulmonologist Dr. Liou was ironically Julies doctor today and as such was the one to discharge her. It is sort of symbolic, its a goodbye to CF centralized care and the opening of a new chapter in post transplant care. The doctor who has seen her since her for the last decade and has helped prolong her life was the one to let her leave the hospital tonight. Julie just said "Maybe James had something to do with that too." The clinicians and physicians who take extra care have so much reward when they see a success. There are so many "debbie downer" situations at the hospital, and as we made rounds to have Julie's lung pillow signed, we saw how much joy it brought people to see her in a relatively healthy state. We are eternally grateful to every doctor, respiratory therapist, physical therapist, nurse, hca, clinicians and hospital staff who have cared for Julie. It is bitter sweet to leave this place. Most would think we would say 'good riddens' but for us its hopefully, see you around, at maybe a restaurant, but not here.
Dr. Liou was very conciencious of people coming to see julie as is her new pulmonologist Dr. Barb Cahil. I am going to make this as clear as Ted Liou did: A nuisance of a bug to you could be fatal to Julie. Please don't come around or pressure Julie to see you if you have been sick, around someone who's sick, or there is any thought that you might carry something. WE HAVE ONLY ONE SHOT THIS TIME. We are so excited about the support and love we have felt through prayers, fasting, phone calls, messages, and emails and hope you will use your best judgement so I don't have to. I am in protection mode as a spouse. Eventually we will have a relatively normal social life but for now, we are hermits.