We know that each day of this journey is going to have its ups and downs. Today was no different.
Late last night, Madeline was moved from her bed in one wing of the CTICU to a more private room on the other CTICU wing. This wing is for patients who are slightly less critical, which is a good sign. Unfortunately, her new room didn’t help her get much rest overnight, so she was a bit sleepy when Jim, Colleen and Mike arrived. She spent much of the morning sitting up in her chair (sitting in the chair allows her lungs to expand more than lying in the bed) with the lights off and easy listening music on while getting some short bouts of sleep.
In addition to being tired, Madeline was feeling nauseated on and off throughout the day. She also desperately wanted to have some water to drink, but had to settle for a few small swabs of her mouth.
On the positive side, she was better able to communicate without the breathing tube in her mouth. Now her family just needs to get better at lip reading and charades! Some messages were easier to understand than others. Mike headed home to RI midday with strict orders to “Give my boys great big hugs!”
Another positive is that Madeline is demonstrating more and more spontaneous movements. Throughout the day she would raise her arms towards her head and stretch her fingers just because she could. She was also moving her legs -- at one point crossing them while lying in bed.
The best news of the day, however, came from a breathing trial. This breathing trial was the most successful one yet. Madeline was able to breathe on her own for 10 minutes without the vent! Towards the end of the ten minutes, Madeline was getting tired, so they put her back on the vent.
There had been discussion of trying to get Madeline to take some steps today, but that didn’t come to fruition. Maybe that will be a highlight for tomorrow.
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!