Today was another good, but challenging day. Overnight Madeline was weaned off nitrous oxide which was being used to expand the vessels to her lungs and allow the oxygen to flow. The medical team also started to wean her off of the sedatives so she was a little more “with it” this morning when Jim, Colleen, and Mike arrived. Her eyes were still glossy and unfocused, but she was responsive as they read comments left on Facebook and the Mad For Life blog overnight. (Keep the positive thoughts coming!)
Around mid-morning, a physical therapy team transferred Madeline from her hospital bed to an armchair - today’s major accomplishment. While the nurses said she was strong and did well, it didn't necessarily look that way to the untrained eye. After being transferred, she was visibly in pain so they increased her IV meds to make her more comfortable. However, it made her drowsy again.
The big challenge is to find the fine line between giving her enough pain medication to make sure she’s comfortable, while lowering the amount of medication she receives to ensure that that she starts to regain control of her body. She’ll continue to have some level of pain for the foreseeable future since she currently has six tubes (three in each side) protruding into her chest cavity. But the goal for tomorrow is to find the right amount of medication in order to start weaning her off the ventilator. If Madeline can regain enough control of her body tomorrow, they’ll try turning off the ventilator to see if she can breathe on her own. They’ll do this a few times, lengthening the duration she breathes independently each instance. If Madeline proves that she can breathe on her own, they could remove the breathing tube tomorrow.
Removing the breathing tube would be a tremendous step forward for many reasons. One major reason is because it would allow Madeline to start communicating again and give her the ability to tell her nurses and the medical team why and when she’s uncomfortable. But it’ll also give her the ability to speak to her family, which Colleen and Mike are hoping will happen before they head back to Rhode Island on Friday or Saturday.
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!