Happily Dreaming

Chelsey is a little 7 year old girl with a chromosome abnormality. No one has seen this type before, it's new and unknown, and as such hard to treat. She experiences periods of apnea (where she stops breathing) for no known reason. For these spells she requires a tracheostomy so that when she has these periods they can easily hook up the breathing machine for her. I'm vastly simplifying her condition, but given all her other complexities and her quality of life, which is poor, her parents have decided to sign a DNR or do not resuscitate order for Chelsey. While she hasn't had another apnic spell yet, the next spell will likely be her last.

I met her at a very special respite house, which my city has been blessed with. Many states are without anything like this for children and many of those that do are put to shame by this "house" which I found myself at. Imagine going to live in a small cottage filled with people and things that were there to make your last days, happy days, that's what this respite house is to the children. To the parents of these chronically ill children, this is a break, an oasis in the middle of a life spent up caring for their unfortunate loves. If a child qualifies, the child can stay there a total of 30 days, used any time during the childs life. If the child is placed on hospice with a DNR, they are allowed an unlimited stay.

I was to meet a nurse there for home visits today, but because she didn't have any, I got to participate in Chelsey's Wish. While at the house the children get to ask one wish that they would like granted, some ask for movie stars to visit, others ask for smaller simpler things, but this house and it's staff go out of it's way to make it happen. Chelsey's wish was to be a nurse when she grows up at this specific respite house.

Today when she awoke, she was given badges and scrubs to wear. She checked in at the clock and she had her first day ever as a nurse. I can't describe how amazingly happy she was as we traveled around to patient rooms interviewing patients with her notepad and listening to them through the stethoscope. When she'd had her fill, we took her to the family room which had been redone as a triage center. Gurneys and wheel chairs filled with large stuffed animals were found scattered through the room. In the corner a large camping tent had been made out as her nurse/doctors office and we'd set Carl the Gorrilla at a desk outside as her nursing manager. Inside the tent, a makeshift cot for a patient was made up. One side was stacked with nursing supplies from thermometers to IV kits. Something like this may sound so mundane to anyone else, but to her she stepped out of her illness for a day and was a kid in a kid's dream. One by one, I brought her the patients who were lined up outside to see her. We treated everything that morning from an abscessed tooth to splinting a Alligators broken tail. Although her condition leaves her chronically fatigued she "worked" tirelessly until all of our patients had been seen...I even asked her once if she needed a break, to which she replied, "More patients!" Every patient she sent away healthy, with a hug and a sticker...some with splints, some with bandages, all with imaginary smiles. We ended it all watching her favorite movie "The Lion King" surrounded by all the patients that she had helped, during the movie I heard her quietly state to herself, "This is the best day ever." I left her with a big smile and a bigger hug. I was told later that night, she quietly passed away. I'll never forget how happy she was, it was a great privilege to have been present for that. I like to think that she died just as she lived, happily dreaming.