I thought Don was doing so well ... and today, a reality check. We're waiting to get him into the Long Term Care facility ...and one doctor is holding it up. We're not sure why. We find out today, it's because he doesn't come over there daily ... the specialists just come over there occassionally ... once or twice a week.
Don has to be stable enough to not need HIS care daily. Oh. So, Don has to become stable enough to move him to this long term care facility for Critically Ill patients .... oh.
Reality check time. He's better, he's significantly better. He's but he's still very sick.
The doctors are a little frustrated with him wanting one thing one day and then not agreeing to it when they go to do it. Either they're not listening, or they're not understanding that they haven't made themselves clear to us. They haven't explained to us how the Bipap machine works ..and why he can't be on oxygen for 4 hours and then on the Bipap for 2 hours, off for 4 hours .. and only today was I told, it can't be done that way ... I still don't know why ...just that it can't. They are seeing him as non compliant, and we are not understanding and asking for explination. The really frustrating thing ...this is my most beloved doctor in the whole world ... I love this man dearly and when Don was so sick and his partner was seeing Don (his partner is on vactation, so he is seeing him now) Dr. G saw me, gave me a hug and I just kind of fell and melted and started to cry, he let me cry and just held me.
We have a 10 year relationship ... and I knew his Mamma for 5 years before that. His mom had myasthenia and had it from the time he was a teenager. It's not like he doesn't get serious illness ... he gets it all too well ... and from the family side of it ...
Somewhere there is a glitch and I'm not sure where ... we do know he's doing medically right by Don, we're just confused. The poor hospitalist thinks that there is a conflict between us ...and doens't realize that we simply asked him the questions because we were unsure of what was going on ... No, we will always love Dr. G ... but we also trust him enough to ask him questions, either directly, or ask the person who's going to talk to him next ...to tell him ..these are our concerns.
But somehow, it's making Don look like he's not being cooperative ... I think the breakdown is happening at the Respiratory Therapist level ... instead of taking the time to listen to Don and answer his questions and find out for him what the doctor means ... they just say "well, you can refuse treatment if you want" and then hook him back up to oxygen and don't mess with it, or leave him hooked up to the bipap for extra time ...
This should change in the long term care ...
Dr. Suess
"And will you succeed? Yes indeed! Yes indeed! Ninety Eight and Three Quarters guarenteed!"
((hugs)) You know you can call me . . .
ReplyDeleteI hope you get this in time to get some questions answered! Ask for a conference with repiratory therapy (supervisor if needed), physician and nursing -- emphasize it's because you don't understand what is going on, what is needed, and what the goals of therapy are. State SPECIFICALLY "I have a lot of questions because I don't understand this therapy. Could we have a meeting to go over this?" Keep in mind that the respiratory therapist is a technician, and there to administer treatments -- when the therapist is questioned, he or she often doesn't know the specific answer (and has learned over time to offer the patient the ability to refuse the treatment as an option). Write your questions on a list, and hand the list to every physician, nurse and therapist who walks into the room until someone takes the time to answer the questions. Emphasize to everyone that you're not trying to interfere with treatment or refuse anything, but trying to understand so that Don can be the best patient he can be and you can continue to offer the best support you can.
ReplyDeletebest,
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I am a respiratory therapist and while I can't answer all of your questions because I don't know anything about your case or that hospital, I can tell you that the reason we RT's at my hospital want the patient to stay on the BiPap except to be taken off to eat and sometimes even then the BiPap therapy is more important than eating, is that the BiPap is a non-invasive (meaning no endotracheal tube) form of ventilation. It comprises of 2 levels of pressure, one to open the lungs, creating more surface area for oxygen to cross the membrane into the blood stream, and a top level of pressure that eases the patient's work of breathing, which also eases the stress and work on botht he lungs and heart. In a nutshell, the reason we don't want a patient to go on/off like what you're talking about is because as soon as the patient goes off the BiPap we lose that lung opening effect they're on it for in the first place, and we lose the breathing support so it negates the therapy of using the BiPap. The sicker the person's lung the more they need to stay on the BiPap as continuously as possible. There is a point where we wean people off but it's more of a more time on with breaks off kind of thing rather than shorts spurts of BiPap time.
ReplyDeleteHope that helps a little.
I'm so glad things are improving and I hope they continue to improve all the more.
ReplyDeleteI like what artemis said
ReplyDelete