Kiera Boldly Goes Where No Baby Has Gone Before...(as far as we know)

Kiera seems to be having a better week. Although still on some IV sedatives, she is essentially awake and trying to regain her muscle control. She loves to pull her balloon down to her hands. She plays with her toys and smiles and laughs all the time. She thinks so many things are funny, particularly the phrase "junk in her trunk." (long story) She has the new 54mm trach tube in which is not quite right yet, and she will have a newer 60mm trach put in Thursday. This may or may not help...we'll see. Kiera is getting two IV antibiotics for her serratia and MRSA which seems to have made the difference with her this week. We have many good things to hold on to.

Kiera has definitely challenged the doctors to change the way they approach chronic patient care, and we have seen everyone bend over backward to try to help her. She now has a primary care intensivist to try to illiminate some of the inconsistencies in her care, and this model will be used with future chronic patients. Kiera is the first. We had a care conference today to assess where we are and where we are going. Kiera is a triple whammy: has terrible pulmonary hypertension (which is under control with her sildeniphyl and bosentin), terrible tracheal malacia (which has a 50% mortality rate by itself), and terrible chronic lung disease. Dr. Glasser says he's never seen all three in any of his patients. The overwhelming theme of the conference was the real possibility that there may be very little left we can do for Kiera and that she may be getting progressively worse rather than better.

She needs to grow new lung tissue, which will take a VERY LONG time. In the meantime, there is a question that MAYBE she has grown too big for the current lung tissue she has and that that may be why she seems progressively worse than she was back in June. Maybe her lung growth has not been proportionate to her body growth. We still have hope that her current course will buy her time for new lung tissue to grow. There was also mention of researching lung transplant options as a last resort.

Jerry and I were pretty thrown by the direction of the conference today. We were feeling pretty positive about how she was doing this week...before this meeting. We came up with a few more ideas during the conference, but not much. For now, we pray they are wrong about her getting worse, that the new trach may help her improve and provide a temporary solution for her tracheal malacia, that the antibiotics will control the infections without causing problems, and that we can grow her lungs so she can continue to be the bright spot in our day that she is. We hope she is happy and enjoys her life despite her struggles. We hope she is a model of success for all of her health care professionals and everyone else she has touched. She definitely inspires us every day.

Love,
Therese