I arrived at the hospital for what I thought was early, 8:45 am but by then Alicia had already seen pulmonary doctors, and a Physical Therapist and was getting ready to be lifted into a chair! She was very busy today and awake for almost all of it. Her communication ability is better now (or maybe I am just getting use to what she wants). Anyway, she was able to write a very messy message to the doctor when she had questions. The doctor mentioned he should be able to read it since it looked like his writing. It was progress today she could even hold the pen to the board because she could not do that prior to today. She also had questions why she has a trach. I explained it is so her body can adjust to the new lungs without a great shock to her system. Since she has struggled to breathe for so much of her life she still feels short of breath like many CF patients who get a transplant. It’s a learning process for CF patients to get use to breathing and may take some time to make this adjustment. The doctor told her the trach can come out in 2 -4 weeks depending on her progress. Today she also wanted a lot of water on a sponge. She cannot swallow liquids or eat anything until she passes a swallow test. If food or drink would go down wrong they could damage the lungs so it’s important she pass this crucial test. It has to be given when she’s fully aware and awake so this may take a lot longer. She is still on the pain pump and able to ask for extra pain medicine on request. The chest tubes are still in but should start to come out one by one starting tomorrow (one is removed per day). Once they are gone her pain should be less. By 8:30 pm she was sleeping so I left for the evening. I am sure it will be another full day tomorrow.
Mary Kay (mom)