Breaking Records, Making Plans

Everyone on Madeline’s medical team continues to comment on how impressed they are with her progress, positive attitude and determination. Earlier this week, we received confirmation that Mad was, in fact, the oldest scleroderma patient that has ever been transplanted at UPMC. Knowing how concerned transplant centers are with their ratings (which are based on patient survival rates over time), this speaks volumes as to the transplant team’s confidence in Madeline as a strong recipient candidate as well as her enthusiasm and strength.

On Monday, it was determined that Madeline’s trach wound was completely healed. She was happy to be rid of the gauze and tape that had been pulling at her throat. Madeline also “graduated” from speech therapy and was permitted to add swabs of apple juice to her repertoire of dumdum lollipops and swabs of ice water.

In Jim’s father’s later years, each time he was hospitalized he was always eager to know “the plan.” Every Tuesday morning, the inpatient rehab team meets to plan for the discharge of all of their patients. We were all eagerly awaiting “the plan” and had been cautiously optimistic that Madeline would be released on Friday. However, due to the fact that she will be coming home with a PEG tube, the team decided to wait to discharge her until Monday so that visiting nurses will be better able to coordinate her care.

In the meantime, Madeline has been keeping very busy with her therapy sessions. Without supplemental oxygen, she has been moving farther and faster than she has in years even with oxygen. Her therapists have taken advantage of the unusual temperatures which have been in the mid- to high- sixties this week. Madeline had a chance to go outside again Tuesday during physical therapy. She walked from the main entrance of the building (near the overhang in the bottom left corner of the picture) to the flagpole area and then across the driveway and slightly uphill to the other sitting area on the far side.

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After all of that exercise, Madeline earned her “green card”. This indicates that she is now able to freely move around her room unsupervised. The videos below document her first unassisted trip to the restroom on Tuesday afternoon. Each time her medical team observes her, they note that she receives “bonus points” for her attention to the small details as she moves about her room.

Madeline’s transplant team continues to mention how “beautiful” and “young” her lungs are. At this time, we are unable to know anything about her donor, but are so grateful to the donor and the donor's family for the incredible gift Madeline has been given. If you haven't already, please consider becoming a donor and giving the gift of life.