Another milestone was met on Monday when Madeline’s trach was removed. That area of her throat is now covered by some gauze while the incision heals. For the time being, she has been instructed to apply pressure to the area with her fingers while speaking. This prevents air from leaking out and speeds up the healing process. It is expected that the incision should be fully closed within the next few days.
Madeline had hoped to be moved to the inpatient rehab program at UPMC on Monday. Unfortunately, due to a lack of beds on that wing, her move didn’t occur until Thursday. Since then she has been very busy with various therapies. A normal day consists of a physical therapy session, two occupational therapy sessions and a speech therapy session. Speech therapy generally lasts about 15 minutes, but each of the other 3 sessions last about an hour each.
When Madeline first met with the therapists in the rehab unit, they asked what she wanted to be able to do. Madeline, unsurprisingly, said she wants to be able to walk on the beach. To help her meet that goal, Madeline walks on foam boards which replicate the uneven surfaces of a sandy beach. This is included with a number of other exercises to strengthen her body. She has taken multiple “six minute walks” over the past few days. Madeline says they are slow walks, but this is a huge accomplishment especially considering she has not been able to sustain a six minute walk WITH the use of oxygen for over a year. During her afternoon OT session today, the therapists took advantage of the beautiful, unseasonably warm weather and took Madeline outside. She was thrilled to get some fresh air for the first time in over four weeks.
Madeline’s favorite therapy is her speech therapy sessions. During that time she is working on swallowing so that she can eventually have her PEG tube removed and begin eating and drinking real food. For the time being, the lollipops that she receives during speech are one of the highlights of her day.
Madeline has also been delighted to have multiple visitors this week. Jim’s brother, Tim, was in Pittsburgh on Tuesday for work and stopped by UPMC. Colleen arrived yesterday for the week, and the Petersons have also been in to visit and spread some cheer.
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!