Sad Outcome

Well, the day has come and gone - it was long, tiring and extremely frustrating. Ammon's surgery was scheduled for 1:00 p.m. We were supposed to be there by noon. We got there a little early when they told us the surgery had been moved back to 2:00. A short time later they told us it wouldn't be until 3:00 p.m. Here is a picture of Ammon waiting in the surgical waiting area before he got the Versed, which makes him pretty loopy. He really didn't need the medication because he was very, very calm and not the least bit nervous. Ammon was very certain that he was going to get the trach tube removed today. We weren't so sure and tried to tell him a couple of nights before that it might not happen. His response was, "Well, I'll just have to have my brothers come and give my head a blessing!" David did come up last night and assist in giving Ammon the blessing. Jim gave the blessing and didn't bless him that the vocal cords would be fine and that the tube would come out. He blessed Ammon to have peace no matter what the outcome would be.
The tube did not come out. The ENT didn't even do what he told Jim a month earlier what he was going to do. He had initially said he would remove a small piece of scar tissue at the bottom of the vocal cord. For some reason, he didn't do that. It wasn't clear in our discussion whether this piece of tissue had become hardened and so would be a permanent thing or if he just didn't see what he thought he saw earlier. He did remove some scar tissue that had formed underneath the opening of the tracheostomy and took a long look at the cord. He said Ammon has an airway opening of about a two year old toward the bottom of the area but because Ammon doesn't breathe very deeply, he was able to get away with breathing without much trouble. He did say that it would be possible to function without the trach as far as the vocal cord, but he talked to the pulmonologist and Dr. Valdez and they all agreed that it would be very dangerous for Ammon to sleep at night without the aid of the ventilator. We are pretty upset about this because the blood gas build-up is soley the basis for this decision. He had very high blood gases and protein in the blood while he was so sick from September to December. Of course they were high - he couldn't breathe due to the blocked airways! They didn't give us an option, just as we thought might happen. Because we didn't have the legal papers in our hands (Dr. Valdez has them for some reason), we came home with the trach tube still there.
We have no intention of attending the clinics they keep calling us about. We have little intention of dealing with the pulmonologists at all unless it is on our terms. One of those terms is that one night in the hospital they will cap the trach tube and check the blood gases now that he can breathe - and this will be without the ventilator. If we are proved wrong, then it will be a different situation. If we prove them wrong, then we have grounds to remove the tube.
I asked Dr. Smith (ENT) during our consult after the surgery, if he considered the ventilator to be life support. He thought for a long time and very carefully tried to say something - all he could say was, "Well, the bi-pap machine could be called life support, too." I said, "No, that is small and can be taken with us. With a bi-pap machine, he can get in the wind, the dust, the water, and doesn't have to have a nurse in his face 24 hours a day. There is a HUGE difference in the quality of his life now versus what it used to be."
The anesthesiologist walked me back to the room where Ammon was recovering and tried to say nice things like, "Well, lots of kids have these and they eventually get off of them or learn to live with them; it isn't so bad." I snapped back, "Do you have a child on a ventilator or trach?" He said he didn't. And so I said, "Don't try to tell me you understand what it's like because you don't. You have no idea what he goes through."
We were not the popular kids on the block today. We will get the papers and sign them and if/when the time comes for Ammon to say, "Enough," then he can say that and it's done and it will be legal.
Once we got home and Ammon was awake enough to realize what really happened, he cried and cried. He said, "My life's a wreck. I hate it." I rocked him on my lap sitting in his chair and talked about all the cool things in his life like his 10 brothers and sisters that love him. We talked about his computer and his friends. He began to settle down and understood what I was saying. He is calm now and can smile.
After the blessing that Jim gave him last night, I began to cry just a little. Ammon turned around and saw me. He came over and gave me a big hug. He then said, "You're sniffling, Mom." I told him I was. He said, "What's wrong?" I said, "I just love you." And then he took his thumb and gently wiped my tears away. He looked long and deeply into my eyes without saying anything but his look was one of a grown man comforting his mother. It was such a strange event but so profound.
If anyone has any idea that we want to turn the machines off so he will leave us, put that thought to rest because that is not what our issue is about. I cannot imagine my life without him and the joy he brings to so many people. His life "is what it is" and we will have to make the most out of the time he has. I believe we also have a responsiblity to help him have quality to his life - we are still sorting all this out and it's a very emotional issue. Hopefully we'll have open enough hearts to know what the Lord would want for Ammon.