We had a very good meeting with a new pulmonologist on Thursday. He was very thorough, informative, and has put together a plan of action. His recommendation is to stop giving James one of the meds he is taking to help manage his secretions and instead use this special patch. It’s a small patch that is placed behind the ear, and is sometimes used to prevent motion sickness, or to treat nausea and vomiting after surgery. It is also sometimes used before surgery to decrease saliva. This is what he hopes it will do for James. By decreasing his saliva output, his secretions will be much more manageable. If this patch works, there is an added bonus for Stacy: she will no longer have to get up at 1:30 am to give James the medication he had been taking for secretions.
In addition to the patch, the doctor has also prescribed a new nebulizer treatment, and has ordered James a percussion vest. Once we get it, James can use it while on his arch to help break up any mucus or gunk buildup. James will need to have his head at a downward angle so anything that the vest breaks up will follow gravity out of his mouth instead of possibly going the other way into his lungs, which will cause other problems like pneumonia. It will be similar to the picture below that I shared in my post last week where James is on his arch, and Stacy is using a handheld massager to try to break up the gunk. The percussion vest will have a bit more oomph, though.
I think this is the percussion vest we’re getting. If not this exact one, it should be something similar:
https://www.respirtech.com/therapies/incourage.html
James’ Runner
Stacy came across an organization called “I Run 4” where they pair up runners with people with special needs. Stacy signed James up to see if anyone would be interested in running for him and on Monday she was notified that James was matched with a girl that will be running for him. From now on, whenever this girl runs, it will be for James. How cool is this? And it sounds like she is a pretty hardcore runner. This is a comment she left on James’ Facebook page when we announced James has a runner:
“I am so happy that I was paired up with James. My son, Jonathan James, was also a two-vessel cord baby. The stars lined up perfectly and I will run hard for James. My next big run is a 24 hour run at Hinson Lake, NC at the end of this month. Two years ago I participated in this same event and made it 76 miles in 20 1/2 hours. I know that I can go farther with James as my inspiration.”
Seventy-six miles?! Over 20 hours?! That’s crazy! I’d be lucky if I could make it two miles. I have included links to “I Run 4’s” Facebook page and website below if you would like to find out more information.
https://www.facebook.com/IRunFor
