Uninterested in opening presents, his response to his parents’ encouragement was to shake his fist and point to the breathing tube inserted down his throat.
“He was mad about the breathing tube, mad about feeling bad and just crabby in general given the specifics of having new organs put in and new lines in places,” his mother, Julie, wrote in a Jan. 1 blog entry on the Weston K Children’s Organ Transplant Association webpage — her first entry since Weston received his new heart and lungs during a Dec. 12 surgery.
On New Year’s Day, Weston was a different kid. His breathing tube was removed. And for the first time since the surgery, he walked. He smiled and laughed and spent a large part of the day playing video games with his big brother, Easton.
On Thursday, Weston was back to work, “doing school” via laptop in his room at the Children’s Hospital in Philadelphia, where he has spent the past 2½ years awaiting the transplants.
His mother reported Friday that his teacher had come to his room to check on him and asked if he would like her to read to him. Nope. Weston wanted to read to her and to do a little work with her on money and time. “He’s learned to tell time so that when his nurses tell him they’ll be back in five minutes he can call them on it,” she said.
Weston also did quite a lot of walking in his room Thursday and was set to walk farther Friday evening. His BiPAP, a device that forces oxygen into his nose and mouth to help his new lungs heal, was replaced Friday morning with a smaller CPAP machine that will allow him to venture out of his room and walk the hallways. From the CPAP, he will gradually advance to a simple oxygen tube and finally to room oxygen with nothing to obscure his face and smile.
All in all, his doctors and his family are very pleased.
“He’s getting a little bit stronger every day,” Julie Keeton said Friday. “They say walking is a big turning point in healing lungs that have been transplanted and he’s walking a lot. We’ve been really happy.”
In her Jan. 1 blog post, Keeton also revealed Weston has shown some signs of rejection. On Friday, she described it as an “antibody-mediated” rejection that almost everyone experiences after a transplant. Weston’s is at very small levels. His doctors anticipated it and are treating it with medicine and with a plasma-exchange procedure he will undergo daily for a while.
Her blog entry also referenced the “happier place” to which the transplants have delivered her and Weston’s father, Adam Keeton.
“He was so sick this summer. ... We were talking (do not resuscitate orders) every week. He was the sickest he could have gotten. We’re a million miles from that now and we’re just so thankful,” she said Friday.
Julie Keeton, who is keeping Weston’s siblings with her at an apartment in Philadelphia while her husband works to maintain their health insurance back home in Tennessee, talks about life at the children’s hospital as the featured mother in this month’s Metro Kids, a Philadelphia-area parenting magazine.
“I hope that I give my fellow hospital mamas some strength, hope, encouragement and ideas about how to use hospital resources,” she wrote in the Jan. 1 blog entry. “Our family has been abundantly blessed.”
Her story can be read online at http://bit.ly/1gygA1v.
To help the Keetons with expenses related to Weston’s transplants, donations may be made to COTA and earmarked for “Weston K” by mail to the Children’s Organ Transplant Association, 2501 W. COTA Drive, Bloomington, IN 47403.