100 days. It seems like every time you turn on the TV lately, you hear, “100 Days.”
It’s been 100 Days since Madeline went into the OR for her transplant. 99 days since she left that OR.
It’s been 1 week since she left Pittsburgh.
One week since she’s been home.
It’s been 100 days, but it's been the little things. As Madeline said this week, “When you return to the place where you lived for so long, you realize how sick you were.” Madeline no longer needs to have a chair waiting half way between her favorite chair and the bathroom and the bed and the bathroom so she can stop, sit, and catch her breath (keep in mind, the total distance from the bed or chair to the bathroom was about 20 feet -- and that was with oxygen!) For the first time in over 3 years, she’s been able to walk to the mailbox. As her friends come to visit and welcome her home, they remark about how she greets them at the door, rather than just telling them to come in as she sits in her chair.
She has walked through Stop & Shop, she has walked down the hall to the doctor’s office, she’s enjoyed lunches with good friends, and she has had her 3 year old grandson, Matty, ask her to play hide and seek -- all things which most people would have normally taken for granted, but we now fully appreciate.
Yesterday Jim and Mad were able to go to their grandson Danny’s lacrosse game. Today they returned to their Sunday routine -- 11:00 Mass followed by their “Lunch Bunch” at Twin Willows. Their friends were overjoyed to see them and were ready to welcome them home.
Mad and Jim are home!!!
Last week, Madeline had an appointment with her transplant pulmonologist who felt confident that Madeline's stomach tube could be removed. She advised that the transplant surgeon would have to give his approval as well, but that once the tube was gone, Jim and Mad would be free to return home to Rhode Island. They will have frequent -- but MUCH shorter -- return trips to Pittsburgh as she will continue to be followed by her UPMC transplant team for the rest of her life.
Mad and Jim anxiously awaited for the call from the surgeon which finally came Wednesday. On Friday morning -- exactly 3 months post-transplant -- Madeline returned to UPMC to have her stomach tube removed. Everyone there continues to be amazed by her progress.
Friday night, Jim and Mad enjoyed a celebratory dinner with the Peterson family. Barb & Terry Peterson were kind enough to open their home and their incredibly generous hearts to Jim and Mad over these past ten months. Barb's well-honed nursing skills were also put to good use as she took wonderful care of her "roommate." Once probably best described as distant relatives, the Petersons are now dear friends. Their support during this time was truly immeasurable.
Saturday morning Madeline enjoyed a little more cake for breakfast before she and Jim said their goodbyes and hit the road.
After driving about 6 hours, Mad and Jim stopped for the night in New York. They had dinner at a little Italian restaurant and were surprised to notice the sign above their table.
Madeline and Jim we're excited on Sunday morning to finally drive the last few hours toward Rhode Island. They spent a wonderfully happy afternoon with their family and are overjoyed to finally be home!!!
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!