I wanted to share this story with you about the lengths required to keep a child who is vent dependent at home.
In 2008, a nurse I worked with in the PACU, D, had a 4th of July party at her home in PA. Her then 5 year old son, M, was driving around on one of those motorized kid jeeps in their driveway. Under the watchful eyes of his mom and others, He drove his little jeep under a raised pick up truck. Mom became concerned when her son did not reverse and come back out. She went over to her son to get him out of being stuck and realized he was blue and not breathing. She yelled for help and got her son on the ground and began CPR. He was flown to AI duPont Children's Hospital and subsequent studies showed he had fractured his C2 vertebra. He was a quadriplegic and vent dependent at 5 years old.
We raised money within our hospital to help with the expenses for bringing M home. They had to enlarge a room, create bigger doorways to accommodate a motorized wheelchair, a ramp to their front door, buy a van with a wheelchair lift etc. M required 24/7 nursing care. He could shrug slightly and required a head attachment pointer to a computer so he could communicate. He could be off the vent for less than a minute and sometimes his mom could plug his trach to let him get a short sentence out.
The state of Pennsylvania has assisted in his medical care expenses as the costs are astronomical. Accommodations were made at his elementary school and a nurse has to go to school with him and sit through class. He is unable to actively participate in class, but it has been important to D that he try to be as mentally stimulated as possible. M has an older brother who has kind of gotten lost in all of this. D and her husband try to do things with him individually, but all semblance of a previously normal family life has been forever changed. D has taken M to Children's Hospital of Philadelphia for numerous second opinions which have only concurred with AI's. D quit her job so she could take care of M, when not in school. Her life is now filled with the sound of a vent and alarms going off. Shortly before she quit, she broke down and said she wished sometimes that M could have gone to heaven and not survived. She said her life was so hard now, worried about finances, her other son, M and her marriage. The strain of M's accident and subsequent condition has affected them all, not in a positive way.
I have no idea how M is doing now. Jahi's case has reminded me somewhat of M and D. I don't think NW has any idea of the longer range ramifications of the decisions she is making now. Neither did D at the time, and D had the benefit of medical knowledge and comprehension of what physicians were telling her. If NW is successful in taking Jahi home, it is my hope that there will be a huge support system for that family, especially the other children, and as time goes on they will still be present. Presently, Jahi is being cared for by experienced and skilled nurses in a setting that has all the equipment needed within an arm's length. Should Jahi go home, I hope the family is prepared for come what may. JMO.
Thanks for letting me share this lengthy story.
