sat march 7........ update

A little update. The week since discharged has odd, both a blur and a grind. A little excitement as Emily so well described in her shower puking incident. There was a bit more of that but is settling now, and some appetite is now returning. The transition from  IV to oral pain meds has some difficult moments. Sorting out dosages, and the oral meds seem to cause a little more GI blues.  Monday was a day full of appointments at UWMC. This is now the weekly routine for next month or more. Starting  early monday Emily visited the pulmonary labs to test the capacity of those new lungs, excellent results, although for quite a while her effort is limited by the tightness and pain from the side to side incision. This is healing well. Blood is taken for labs and they always take lot. A nutritionists and a scheduler. Then a few new, to us, folks from the post transplant team. All of the nurses, techs, docs, social workers, etc., spend lots of time with you. They are very thorough and familiar with Emily's history. She will be working with these folks for the rest of her life. These are serious sessions as they are monitoring the healing from the transplant and looking for any problems with infection or rejection. There is a constant flow of people in and out and the head doc came and went a couple of times. On friday it was back to the hospital. Emily had a broncoscopy scheduled, this will be a fairly regular event to check out how the new lungs are doing on the inside. We saw some photos, amazing, the union between the old and the new lungs is healing very nicely. The difficult thing about this procedure was having to fast before the procedure, and wait to eat for a few hours afterwards. Thursday evening Emily finally had an appetite for the first time since the major vomiting incident, and she went out to eat, Indian food, with her friend Ashley. The good food and conversation made for a nice night out. By the time the bronc was done Em was so hungary I thought she was going to eat some of the instruments. The attention that is paid to the post transplant patients is impressive. After the bronc there was a fairly long sit and recovery period. During this time Peg asked the nurse, great as always, about a couple of places that had appeared on Emily's incision. (About a week ago two blisters formed right on the incision line. Just good old fashioned blisters. They look like something you would get after a long hike with ill fitting boots. Seeing as as there are no bandages on the incision anymore to be rubbing, and Emily has been wearing only loose fitting t-shirts, we are all puzzled as to what could have caused a couple of big blisters.) The nurse was puzzled, so she went and got the pulmonolgist, who was puzzled, she got the attending pulmonologist who was puzzled, so he called  and asked a question of the dermotologist who appeared in less than five minutes and was puzzled. Being the puzzled parent I stepped out into the hall and called the nurse at the Transplant Team and with in five more minutes the PA from the chief surgeon appeared. He was puzzled, and they will all check it out again on monday. Puzzled, not as yet worried. Try and get that much attention on your next office visit. Em will now be seen at the Dermatology Clinic on monday as well as her now normal round of appointments at the Transplant Clinic and she will be having her first appointment with the surgeon since discharge There are a few clinics that we have not visited but we still have time. It will be a very long Monday but at least Emily will be able to eat which will make things safer for all of us. A poorly fed Emily is not the best companion.

Friday evening was very sweet. Elizabeth, Em's friend and former housemate, arrived from Eugene with very special cargo. On thursday Em placed a special order for her favorite pizza from Pizza Research Institute, Elizabeth picked it up thursday evening, and then placed it in  a  cooler and delivered it to Seattle. It was superb ! We liked seeing Elizabeth a lot too. They did some good walking and have another outing today. 

........sorry not to have posted more, the week just slipped away.