So much has happened since the last blog.
Madeline had a smooth recuperation from her hip replacement this summer. She was committed to her physical therapy and quickly graduated from a walker to a cane to walking short distances on her own. While she didn’t spend the summer jumping waves with her grandsons, she watched from above while holding her brand new granddaughter.
On August 19th, Jim and Mad celebrated their 45th wedding anniversary. The celebration continued the following week when their entire family joined them on Block Island - one of Madeline’s favorite places and somewhere they both missed during their time in Pittsburgh.
Jim and Mad had a short, scheduled visit to Pittsburgh during the first week of August for routine follow-up appointments. A bronchoscopy showed that there was mycobacterium in Madeline’s lungs. The doctors were waiting for further testing to determine the exact strain of bacteria so they would know how to treat it. In the meantime, Madeline started to feel a bit weak, had lost her appetite, and was experiencing some gastrointestinal issues.
On Monday, September 18th, Madeline went for her weekly blood tests. Two hours later, she received a call from UPMC. The bloodwork indicated that Madeline’s potassium levels were elevated so the team in Pittsburgh asked Madeline to go directly to the local ER. Madeline was admitted that day at South County Hospital and the doctors there were in constant communication with the team at UPMC. It was quickly decided that it was best if Madeline were in Pittsburgh, so in the middle of the night on Tuesday into Wednesday, Jim and Mad were flown via medevac to Pittsburgh.
Once in Pittsburgh, Madeline was diagnosed with three large ulcers which were causing her GI problems. The medical team believed that they were caused by some of Mad’s medications, so those were swapped for other medications. She also began treatment for the bacteria in her lungs. Because the treatment will last for months and is administered intravenously, Madeline received a picc line in her upper arm.
Madeline made good, but slow, progress. She underwent another bronchoscopy last week that showed no rejection in her lungs. Once those results were back, Mad, Jim, and the medical team began planning for Madeline’s discharge on Saturday morning with a flight home to New England early that afternoon. Jim and Mad could not wait to get home to their family!
Madeline awoke on Saturday, October 14th with slight stomach pains and swollen feet. Because of this, UPMC did some X-rays and additional blood tests prior to releasing her just to make sure everything was OK. By the time Mad and Jim landed in Boston, her feet and legs had swollen considerably and she was feeling sick to her stomach. She thought that maybe she hadn't had enough to eat for breakfast with her meds.
Once she returned home, her pain had increased considerably and the swelling hadn't gone down at all. Madeline was brought back to South County Hospital. The team there was once again in contact with her team at UPMC, gave her pain meds and administered the same blood tests and x-rays that had been done in the morning for a comparison. She was admitted later that night.
However, around midnight, Jim received a phone call that her condition had deteriorated and that Mad was being transported to Rhode Island Hospital.. Once there, additional tests indicated that Madeline’s intestine was perforated. The transplant team at UPMC was consulted. While RIH could have done the necessary surgery, they didn't have the support of a pulmonary transplant team, so both hospitals felt it was best if Madeline were at a transplant center in Boston.
At about 7 am Mad & Jim arrived at Brigham & Women's - the 4th hospital in less than 24 hours - that has to be a record! She underwent surgery to repair the perforation enough to stabilize her. The surgery went well, but because of the sedation she was under, Madeline was put on a ventilator and a breathing tube. Her stomach was left open, and on Tuesday the surgical team was able to completely repair her intestine. Once that surgery was completed, Madeline was weaned off the vent and her breathing tube was removed. She is currently being fed through a nasal tube which hopefully will be removed tomorrow.
Madeline is being closely monitored by members of the pulmonary, surgical, and infectious disease teams at Brigham & Womens. All of those teams are working closely together and in conjunction with the teams at UPMC.
All along, Madeline has continually said, "I should've started a book a long time ago!" She certainly has a few new chapters of material!
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!