Little Carly celebrated her 3rd birthday just before commercially flying out from Milwaukee to NYC for a major surgery for her abdominal cancer neuroblastoma. When it was discovered just one year ago, it was initially considered to be inoperable. With many prayers and chemotherapy/radiation, the large tumor had shrunk to at least give her a chance at surgery to take away the awful cancer inside her. Few surgeons in the world would even attempt it, so they were referred to Sloan Kettering Cancer Center.
After hours in surgery, Carly’s parents got news they weren’t looking for, her cancer was wrapped around both kidneys and they could only take out part of the tumor.
After surgery, Carly was in kidney failure with two chest tubes and on a ventilator. Her poor little body couldn’t take much more. Her parents took turns staying in New York while also trying to care of their four year old daughter back in Wisconsin. Long hours by her bed seemed longer because of the way the hospital overcrowding had three sick kids to a room. They had to deal with screaming newborns to injured teenagers that wouldn’t get off their cell phones.
Carly was improving to the point of breathing on her own, but wasn’t able to truly rest with all the commotion. When the parents where told that all they could do was watch and wait to see if Carly’s kidneys would start functioning again (now on dialysis) and see if there was any more chemotherapy her little body could take, they knew they had to find a way to get her home. The social worker had remembered how well Grace on Wings took care of another sick child they had and gave us a call. I was concerned that Carly’s lungs with the chest tubes and being on dialysis would make her just too sick to transport.
I spoke with the staff and relayed the information to our medical director and prayed to see if this would even be possible.
My heart went out to her mom Heidi-how terrible would it be to spend possibly Carly’s last days so far away from home and family.
It was determined Carly was stable to transport and I was able to get my peds transport critical care nurse to go.
We arrived bedside surprised to see so many sick kids in one room. Carly’s nurse was wonderful and helped us to get her ready to go. Her mom Heidi looked so relieved to see us. Carly was rightfully grumpy but after we changed over her monitor leads (a lot of sticker pulling and placing) she said, “yes!” when asked if she wanted to go home. I gave her a Nellie cartoon shirt and told her all about the wonderful airplane that she was going to get to ride home in.
When we arrived plane side, her mom said, “look Carly, Nellie is your favorite color blue!”
We tucked her in and she was good as long as mom was by her side along with her favorite stuffed elephant “Binky”. She had some difficulty breathing at altitude but stabilized with oxygen. God protected her during the flight.
I always love seeing the family of our patients fall asleep on Nellie. After seeing how we rely on God for everything and do all we can to serve Him and our patients, the comfort of the Holy Spirit comes over them and they are able to rest. It is one of the best confirmations of what we do.
Carly arrived to her own room back at Children’s hospital of Wisconsin and I finally got to see her in her mom’s arms. She couldn’t quite give us a smile but her mom’s made up for it.
Thanks so much to my great crew of nurse Stephanie and also Alan, Hal and Mike!
This ministry definitely made a huge difference in this little one’s life and I pray she will continue to learn how much Jesus loves her.
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