It has become one of those family stories that will never die. Ten years ago -- just before Mike and Megan's wedding -- when Madeline’s scleroderma started to impact her life, her rheumatologist asked her what she wanted to be able to do. Madeline’s response? “I want to dance on tables.” While (as far as we know), dancing on tables was not part of her regular repertoire, it was an answer that gave a glimpse at her personality. She doesn’t take herself too seriously and wants to enjoy life to it’s fullest. Over Thanksgiving weekend, Madeline, Jim and Colleen saw this sign and knew they couldn’t leave it in the shop. While more of a Chardonnay girl than a Champagne girl, this fit Madeline to a T. It’s been sitting in her closet until yesterday when Jim brought it to decorate her hospital room. The sign has proven to be a fun-loving way to show Madeline’s caregivers her personality, even if she can’t technically speak for herself.
This morning was fairly quiet. Madeline had been in bed since about 5:00 or so yesterday afternoon. She was uncomfortable and eager to switch positions and was finally moved her out of bed and into a chair at about 1:00 this afternoon. It didn’t take long for Madeline to spring to life. Jim and Colleen started to show her webcams of Aruba -- one of the things that she has enjoyed while tied to a chair over the last couple of years. Next they knew, she was asking for her cell phone and calling her “Brother Like No Other” in Aruba. While Walter and Janet were on the phone, with Colleen lip reading Madeline’s side of the conversation, Jim’s cell phone rang. It was his brother Tom checking in from Florida. In a moment that would have made Madeline’s father’s head spin, Walter, Janet, Tom, Jim, Mad and Colleen were all on speakerphone talking to each other from Aruba, Florida and Pittsburgh!
Since it was the weekend, the hospital was fairly quiet and there weren’t as many teams coming in and out of Madeline’s room, she created her own therapies. She used a Magna Doodle a few times (Thank you, Barb!) to communicate. Since her motor skills aren’t quite what they were a week ago, it is still hard to read her writing, but by watching her form the letters, it was easy to understand her message.
Madeline continued to experience a dry mouth, but her nurse was more liberal today with allowing her to use swabs to wet her mouth. They are very adamant that she not swallow yet, as they do not want her to aspirate into her new lungs. A highpoint of Madeline's day came when the nurse brought her a mixture of ginger ale and cranberry juice into which she could dip her swab rather than just ice water. To look at Madeline, you would have thought she was enjoying one of her much-loved Cosmos!
When her nurse mentioned the prospect of starting to walk, Madeline nearly jumped at the idea. Because the proper teams to support this new endeavour were not in place over the weekend, instead Madeline marched in place for a short time while moving from her bed to chair and chair to bed. So, while she’s not quite ready to dance on tables, she’s almost ready to march on them!
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!