Today Madeline had multiple attempts at breathing trials which didn’t go as well as we would have liked, so she is still on the ventilator and using a breathing tube. There are a few different things that could happen on the road to weaning her off the ventilator. One option is to wait and see if her breathing without the ventilator improves. Another option would be to go back into surgery and perform a tracheotomy. Basically, the trach would also be hooked up to the ventilator and would perform the same function as her current breathing tube. The downside is the surgery that a trach would entail, but the postive side would be greater comfort for Madeline and an increased ability to use her mouth. We have been told that most lung transplant patients require a trach so it’s not the worse thing in the world, but obviously we would prefer that she need to undergo as few procedures as possible.
There were many positive steps as well. Madeline is off the continuous IV drip of pain medication that was sedating her and is now receiving her pain meds intermittently. Because of this Madeline was more alert today than she has been all week. She also had four chest tubes removed, so hopefully she is more comfortable with only two drainage tubes -- one on each side of her chest. Most of the day was spent sitting up in a reclining chair with her legs elevated with Madeline still sleeping most of the day. But when she was awake, she got a workout!
In addition to the 4 breathing trials, Madeline also had sessions with the physical therapist and the occupational therapist. The PT had her bending her legs and even standing up for a minute or so! With the help of the occupational therapist, Madeline worked to put on a hospital gown. We were all impressed with Madeline’s core strength and her ability to sit up straight during this activity after lying down for almost a week.
We continue to share all of your messages with Madeline each day, so keep them coming!
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!