Just a quick update on how Scott is doing, which is very well considering the weak condition of his body.
We are still in the weaning process to get him free of the ventilator. It is going to be a much longer process than I ever imagined. It is really a process of trial and error. We have to watch how his body is reacting to determine what to do next.
I now understand that the longer a person stays on a ventilator, the weaker the lungs become because the patient will not try to breathe on their own, but allow the vent to do all the work for them. This causes the lungs to become weak and building up the strength of the lungs is more of a process than I ever thought.
I have found that each decrease in breath rate might take several months for the lungs to build up enough to handle that rate. It does not seem to us that decreasing the ventilator by one breath should be any great deal but it certainly is to the patient.
An analogy might be akin to having the Flu. Your body just will not run right and you labor to do anything. But as your immune system begins to fight off the Flu you begin to get your strength back and soon you are back like before. This is far worse than the Flu and you don’t get your strength back nearly as quickly.
I have been asked to do “a day in the life of a caregiver”. I will do that on a separate page. Possibly it might help someone who is taking a bedridden loved one home and plans to care for them in their home. Hopefully this will give them an idea of things they will have to do and they can be better prepared. You cannot do it alone.
I have a nurse from midnight until 8am so I can sleep. My son Kirk helps tremendously and his mother comes on her days off work to help. We have someone through the Home Bound Program that comes to bathe Scott and clean his room 4 days a week and a Home Health Aide comes 1 other day to bathe him.
Get all the help you can get. There is help from some government agencies. Check them all out to see what you loved one qualifies for. A good starting place is at the hospital before going home.