Madeline and her new lungs may be in Pittsburgh, but her heart is still in New England. She cheered the Pats on to their fifth Super Bowl title from her room in the CTICU.
Today she celebrated her “release” from intensive care. Since the last post, Madeline was off the vent from Thursday morning until Saturday morning. Friday’s big accomplishment was that Madeline walked vent free from her room to the nurses’ station (about 40 feet away). She was accompanied by a nurse on either side of her and one following behind pushing her chair and all of her various IV lines, chest and stomach tubes. When she got to the nurses’ station, Madeline rested for a bit and then made the return journey. After all that exercise, Madeline went back on the ventilator Saturday morning, but has now been vent-free since Sunday morning.
Madeline has added a few new exercises to her repertoire. The speech pathologist has given her some swallowing exercises to tighten muscles in her larynx and esophagus. Eventually, Madeline will be given a narrower tube in her trach to give her larynx more space to work. Jim reports that now when Madeline talks, she is producing small sounds -- air, no voice yet! -- which is making her more intelligible.
Tomorrow the medical team will biopsy Madeline’s new lungs to test for any signs of rejection. There is a possibility that she may also have the two remaining chest tubes removed. It’s hard to believe how much improvement she has made in just two weeks!
As often as possible, we'll try to update this page to let you know how Madeline is doing and where she is in her fight for new lungs. Visit often!