Well, I drove 5 hours yesterday for an appointment that lasted 3 hours long. X rays were taken, blood was drawn, finger was pricked, a respiratory therapist was consulted, hand outs were given, equipment was demonstrated, paperwork signed and yet, I left without HOPE.
Yesterday I took Miles to the long awaited appointment to see a Pulminologist (lung doctor) and nothing amazing happened.
The doctor was impressed with how terrible Miles sounded on a "good" day. He didn't have any new ideas. He told me I was doing everything great and that I was doing a whole lot for him. He told me that Miles sounds terrible. He told me that Miles has had some damage to his lungs this year from all the sickness. He told me that he's not sure that constant antibiotics and steroids are really going to do much good for Miles. He told me (not the first time I've heard this) that eventually this is what will kill Miles.
He wanted to know or for us to figure out how far we are prepared to go to make sure Miles can breathe. He said that making Miles live a long long time is possible, but how much do we want to ask Miles to "endure" so he can be alive?
Although he did say all these things, he said it in a very upbeat way. He was very encouraging. He called Miles charming. He acknowledged that Miles knows his family and that he's happy and healthy looking.
He talked to us about how these constant pneumonia's will either eventually make the lungs weak and he will die or Miles will have a really bad shock to the lungs and he will die. He didn't think this would be any time soon. (I guess that's just something lovely we can lay in bed and think about at night.)
Oh, and I forgot to mention that he talked to us about why we don't want a tracheotomy because there would be constant goo coming from his tubing and no one would want to hug him and then he could die if left alone.
There was no advice on how to make things better.
No hope medically to make his lungs better.
Only impending doom.
My heart is heavy today.