Tonight Jim and I (Mom) met with Dr. Valdez to discuss Ammon's future and how we can best help him continue to be healthy. At the root of the discussion is the upcoming surgery to remove a tiny piece of scar tissue at the bottom of one of us vocal cords. That surgery is scheduled for this coming Friday, April 10, 2009. The original plan was to do that surgery, do a micro-layer endoscopy to check the underside of the vocal cords and then, if all looked good, remove the trach tube. We have been trying to stay calm and not get our hopes up, but it's difficult to do. Ammon told all his friends at school today that he was going to get the tube taken out. We can't promise that will happen.
One of the difficulties to all this is that the pulmonologists at PCMC have become involved and are saying that we cannot remove the tube due to several issues Ammon has. He has restrictive lung disease, a central brain issue causing him to have sleep apena, and something else that I can't remember. What they don't realize is that Ammon has lived with all this his entire life without a ventilator and has done remarkably well. They conducted a sleep study (actually two of them) when Ammon was the sickest he's ever been during all the mess with the closed airways. We don't feel that the tests were conclusive or really show the truth of what Ammon's sleeping patterns are. They may want to re-take the sleep study but if they do, they will have to pay for it because it won't be covered through insurance or Medicaid. The tests cost about $2500.00.
We met with Dr. Valdez to see what legal issues this could present and to see if we, as parents, had any say about whether we would keep him on the ventilator or not. I was hoping to never get to this point in any child's life, but we are there. Having Ammon on a ventilator truly does diminish the quality of his life - the trach diminishes it even more because there's so much he can't do without "paying" for it later. We don't want Ammon to be tied to his bedroom or live in fear that he could die. We want him to live (!) for however long he has to live and be happy in the process. Dr. Valdez is going to call the pulmonologists tomorrow and talk about Ammon as a person, not just a patient they are intent on keeping alive at any cost. While we appreciate their concerns and efforts on Ammon's behalf, we feel that the pulmonologists have become intrusive in our lives. We want to be free to make the decisions that would be best for Ammon all the way around.
If the vocal cords aren't completely safe and healthy, then there is no question that the tube stays in, but if the problem for which the tube was placed has been resolved, then we have no intention of keeping it in.
This has been an emotional time for us, as parents. We don't want to have to make final decisions and we won't. However, we reserve the right to make those decisions in behalf of Ammon until he is old enough to have full understanding so he can make his own decisions. We will have to have papers signed to show what our desires are accepting full responsibility for whatever happens in the future.
I would suggest that all of you think about getting a living will in place specifying your desires for life support right now, no matter how old or young you are. Your wishes need to be met and it would be cruel to leave those decisions up to a spouse or child simply because you didn't legally make the decisions for yourself.
We hope the next blog will be one of excitement and joy coming from Ammon. We're hoping, crossing our fingers and praying like crazy for a good, peaceful outcome to all of this.