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.
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.
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.
Yesterday was a milestone day in Madeline’s recovery. She has been completely off the ventilator since Sunday, so the vent was officially taken out of her room in the morning. Another piece of equipment is gone, as the final drainage tube was removed from her chest. Madeline’s trach tube was also replaced with a smaller trach tube. This smaller tube is now attached to a speaking valve that allows her to talk! While her voice is still a little weak, she sounds very much like her old self. Madeline also received the wonderful news that her biopsy report came back favorable with no signs of rejection!
While those advancements alone are amazing, there are more exciting next steps on the horizon. On Monday, Madeline will be moved from her current room in the main building of the UPMC campus to a rehabilitation unit in another connected building. When Madeline moves, she will be leaving the hospital gowns behind and trading them in for her own comfortable clothes. She expects to be in the rehab unit for about the next two weeks. During that time, Madeline will be spending 4 to 5 hours per day out of her room for rehab. She hopes to have the feeding tube and the trach tube removed within the next week.
Madeline and her new lungs may be in Pittsburgh, but her heart is still in New England. She cheered the Pats on to their fifth Super Bowl title from her room in the CTICU.
Today she celebrated her “release” from intensive care. Since the last post, Madeline was off the vent from Thursday morning until Saturday morning. Friday’s big accomplishment was that Madeline walked vent free from her room to the nurses’ station (about 40 feet away). She was accompanied by a nurse on either side of her and one following behind pushing her chair and all of her various IV lines, chest and stomach tubes. When she got to the nurses’ station, Madeline rested for a bit and then made the return journey. After all that exercise, Madeline went back on the ventilator Saturday morning, but has now been vent-free since Sunday morning.
Madeline has added a few new exercises to her repertoire. The speech pathologist has given her some swallowing exercises to tighten muscles in her larynx and esophagus. Eventually, Madeline will be given a narrower tube in her trach to give her larynx more space to work. Jim reports that now when Madeline talks, she is producing small sounds -- air, no voice yet! -- which is making her more intelligible.
Tomorrow the medical team will biopsy Madeline’s new lungs to test for any signs of rejection. There is a possibility that she may also have the two remaining chest tubes removed. It’s hard to believe how much improvement she has made in just two weeks!
Yesterday morning Madeline went into surgery to get a feeding tube inserted directly through her abdomen to her stomach. With this surgery, Mad is now free of tubes on her face and she is much more comfortable. Once the anesthesia wore off, Madeline spent the day sitting up in her chair while still on the vent.
Madeline experienced some pain today in her side due to her new stomach tube, so she had another day without walking. But as Jim reports, she was a “happy girl” to have her hair washed today! Madeline’s ventilator was turned off at 6:30 this morning. When the vent is off, she receives a small amount of oxygen through her trach. If Madeline is able to stay off of the ventilator through the night, she may get to graduate from the CTICU before the end of the day!
Tomorrow, Madeline’s medical team will perform a lung biopsy through her trach to check for any signs of rejection. We’re hoping and praying to have good news to share!
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!