I am not sure exactly why the vent needed is not approved for home use. I did not even know that the FDA had to approve vents for home use. But, there is not a company that will supply one that we need for home use. The machine that they use here at the hospital is first of all not insurance covered, not approved for home use and a cadillac model of vents....several thousand dollars. So it is not like I could buy one privately and figure it out myself :). There are CPAP machines for home use, but just not ones that go with a cuffed trach. They can not take the trach out or go with an uncuffed trach nor can they use a mask type CPAP because the air would just blow out the trach and never reach the lungs.
Tracy has said that he will not go to a long term care facility...that he is finished if that is what the rest of his life looks like. I do not blame him, I would not want a future of hospital living for the rest of my life either - it would be like prison.
adam said this morning he was seeing what else he can do or other options that might be available. He was even somber this morning as we got this far and now very slim chance of ever coming home or having a quality life. For reasons that neither Adam or I understand it is possible the type of trach that Tracy needs now will disqualify for him lung transplant even though having a new lung would make it so that he does not need this type of trach. He probably will always need a trach due to the radiation therapy damage to his neck area. But he could then have an uncuffed trach and not a cuffed trach which apparently makes a huge difference to lung transplant people.
