Madeline has made this whole experience look easy - a piece of cake - but we all know that none of it was as easy as she made it appear. It’s fitting that Mad’s first food in 67 days was a piece of cake.
Monday morning the pig tail tube which had been draining the pneumothorax was removed. Later in the day, Madeline underwent a barium swallow test which she passed with flying colors.
As Jim and Mad were waiting for the discharge late Tuesday morning, Madeline's feeding tube became clogged. So before being discharged, she had to have the feeding tube replaced once again. Madeline has officially graduated to a “soft diet” but her meds are still being administered through the tube.
Shortly after arriving at their home away from home, Madeline thoroughly enjoyed a piece of cake and some pudding.
Today was the first day in more than three and a half years that Madeline was able to walk around the house without any tubes -- no oxygen, no feeding bags. Her day was blessedly normal -- pastry and coffee for breakfast, mac and cheese for lunch and beef stew for dinner. She was even excited to report that she switched the laundry from the washer to the dryer -- something she hasn't done since arriving in Pittsburgh in July.
She topped the day off with a long-awaited, celebratory glass of Chardonnay.
The last few weeks have been fairly uneventful without much to report. With the exception of doctors appointments and a few drives around the area, Madeline has been mostly homebound. However, the recent routine was a bit different this week. During a weekly blood test, it was determined that Madeline’s liver enzymes were slightly elevated. On Wednesday, Madeline met with a hepatologist who concluded that her liver does not appear to be compromised and that Madeline’s medications may have caused the higher liver enzymes. Her medical team will be monitoring this situation closely.
Thursday was an appointment with the transplant pulmonologist which included additional blood work, a pulmonary function test (PFT) and a chest x-ray. The x-ray showed a pneumothorax (air pocket) above the right lung. If left untreated, a pneumothroax could cause the lung to collapse. The timing was fortuitous as Madeline had a lung biopsy scheduled for Friday, which could have exacerbated the pneumothorax had it remained undetected. Madeline was immediately sent for a CT scan which was then reviewed with her transplant surgeon. Madeline was then readmitted to UPMC.
On Friday, Madeline underwent a procedure to insert a "pig tail tube" into her upper chest to drain the air. Later in the day she was brought to another OR to have a pulmonoscopy and lung biopsy to check for signs of rejection.
Another chest x-ray was performed on Saturday morning. The good news is that the pneumothorax is diminishing. The even better news is that the biopsy continues to show no signs of rejection. Hopefully tomorrow will be a busy day -- remove the “pig tail”, have a barium swallow test and be discharged once again. If the barium swallow is successful, Madeline’s medical team will allow her to begin eating and drinking soft foods -- the first step toward the removal of her feeding tube. Madeline’s last meal of veal parm on January 19th is a distant memory, but she is dreaming of ice cream and an eventual chardonnay, which are not far away!
Jim and Mad are still hoping to be home in Rhode Island in May and can’t wait to see the family and friends who continue to support them each day.
The rigors of a ten days in rehab prepared Madeline for life with her new lungs. Some therapy activities towards the end of Madeline’s stay included dancing to “Run Around Sue”, practicing getting in and out of cars, as well as performing household tasks such as filling pitchers and carrying them across a room and making toast. Unfortunately, Mad won’t be using the latter skills any time soon as she is still receiving nutrition solely through her feeding tube.
On Monday, February 27th, after 38 days at the University of Pittsburgh Medical Center, Madeline was finally discharged. Early that morning, she sent the picture above of her countdown board to Jim, Colleen, and Mike. Michael noted that Madeline’s reflection on the board made it look like she was holding her hands up in victory.
Madeline’s “brother like no other” and “SIL”, Walter and Janet, arrived Tuesday for a week-long visit. As always, Jim and Mad are thrilled to have familiar faces with them in their home away from home.
Around 3 am Wednesday morning, Jim and Mad were awoken by the beeping of Madeline’s feeding tube alerting them that the tube was clogged. Despite efforts by the visiting nurse, Madeline ended up at the UPMC ER Wednesday afternoon. The ER staff was also unsuccessful in opening the line, so Mad was admitted there at about 7 that night. The following morning her transplant surgeon replaced the line and took out a few of the staples that remain from her surgery. Walter and Janet visited Thursday just before Madeline’s second discharge and were able to meet some of the transplant team.
Friday was another cause for celebration - Jim’s 69th birthday. This year, he could even have candles on his cake! Colleen happened to call just as the party was getting started and was able to join in via Mad’s cell phone.
Another cause for celebration on Friday was when the medical supply company collected the 3 10 liter oxygen concentrators that Madeline used in the house as well as the 33 oxygen tanks that Madeline used when she left the house. Prior to her transplant, the company made twice weekly visits to swap out empty tanks for full ones.
Sunday was Madeline’s first official public outing. Jim, Mad, Walter, and Janet ventured out to the Heinz History Center. Madeline has a mask that she uses while out in public, but luckily the crowds were minimal, and Mad was able to take off her mask for a few photo opportunities in the museum.
The week ahead is a busy one with appointments everyday - including the visiting nurse for her feeding tube, the transplant pulmonologist, and the transplant surgeon. While Madeline still tires easily, she is able to do many things that she hasn’t been able to do in a very long time!
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!