Madeline was hoping to trade her nasal feeding tube for a stomach feeding tube today. Not because of the surgery it would entail, but because she was really looking forward to getting the tube out of her nose. Unfortunately, the surgery was postponed until tomorrow and she gained an additional tube in her other nostril until that surgery takes place. Her stomach has been distended for the past few days and her medical team has been draining her stomach to remedy that situation.
However, there were many positive developments today. Madeline’s motor skills improved dramatically overnight. Her writing on the Magna Doodle is now very legible and she was able to independently use some technology. In fact, she did not need to have your comments read to her because she had logged into the blog and Facebook and had read them herself! In addition, during her morning physical therapy session, Madeline walked from her chair to the door (about a 5 foot distance) and back twice, which is incredible considering just a few days ago she was still bedridden and almost completely sedated. Later, when she left the room for a CT scan, she walked from her chair out to the stretcher in the hallway. But the best news of all is that they tried another breathing trial this morning. Madeline’s new lungs kept her off the ventilator for about eight and a half hours today! This is an amazing improvement over her prior trials which lasted no longer than ten minutes.
Hopefully tomorrow she will be rid of both nasal tubes and will be MUCH more comfortable!
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!