I attended one of your conferences in April. I typically work with preschoolers with speech motor issues. But my question is actually about a teenage boy on a ventilator. Because it is not something that I typically do I didn't think of this sooner, but what I am wondering is if you have done any kind of vent weaning with your horn kits. I know you talked about how they help with strengthening muscles for breathing and grading of airflow.
I'm asking because one of my friend's son was in a swimming accident 1 year ago. He has a spinal cord injury and has been on a vent for a year. He had surgery done in July to graft intercostal nerves to the phrenic nerve and from the vagus nerve to the phrenic nerve. The idea was to see if new connections into the phrenic nerve would make it possible for him to be weaned from the vent. Apparently the surgery was successful and the connections have formed and are good. However, weaning someone who has been on a vent for a year is a big challenge. Again not something I have much experience with but wondered if you have done any work or studies specifically regarding this issue.
I would love to try to help this boy and the family. He was 18 at the time of the accident. He had just graduated from high school and 2 months had the accident. The injury was actually a C6-C7. He was not initially on a ventilator and could move his arms. But due to a number of issues, the surgery to stabilize his spine wasn't done until 3 days after the accident. This caused further damage up to C2. Now he is paralyzed from the neck down and on a vent. We are trying to get him to buy in to trying to wean which of course will be incredibly hard work on his part. I am just looking for anything to guide or help in any way possible.
I appreciate any information you may have that could help me, even if it is to pass along information to the family.
I have worked with kids and adults who were initially on a vent and then weaned but I cannot say if the horns did it or it was just spontaneous recovery. My gut feeling is that the horn and bubble blowing helped but again cannot say that for sure. Here is what I would do. First get approval from the doctor to use the two techniques. If the boy does not have a valve to block the air then that will be your first hurdle. Once a blockage is achieved (there are many options) have him blow the horn or the bubble 1 time, open the valve and let him breath. Transition between these tasks working only while he is relaxed and comfortable with what you are doing. As skills are mastered increase in the number of blows following the instructions that come with the horn kit. The horns will help him to see progress in duration so may be a big motivator and assurance that he is making progress towards the goal of weaning him from the vent.
I hope this helps.