We wanted to give you an update on Dr. M's health very briefly as this will be a long story when I am able to fill in the blanks and improve knowledge of what can be expected in times like these.
Conrad developed a kidney stone when he was home in January, due to dehydration as he became unable to swallow well enough to keep him-self healthy. He lost weight, unable to swallow he could not keep up with the demands of good hydration and adequate food. He had not had an IV since before our Christmas break. He went into the hospital for a simple stent placement over the kidney stone. A few days became five weeks of little food and bedridden.
Something happened during the surgery, perhaps no one noticed his weight, we are not sure but he had trouble reviving from the anesthesia and his throat was damaged from the thing they do - can't think of what you call the thing that is put in someone's throat. He became unable not only to swallow at all but also to control his muscles to speak clearly.
Not being aware of nasal gastric tubes I did not know about that option until one of our patients who is a speech therapist came to visit him and said "Where is his NG tube?", I asked what that was. Not a good moment in my life as this was fully two weeks after the surgery and not one hospital person had offered an NG tube but only the surgically placed tube directly into the intestines. I guess they just thought we should suffer if not accepting their solution. I still have not recovered from the shock of that but when I asked they provided it. After a little bit of "food" that first evening he managed to pull it out partially and they decided not to replace it which I found out later happens frequently and the other hospitals our speech therapist works with just simply replace them. This team of hospitalists said no.
The last 8-9 days we had a very different doctor who ordered it replaced and also allowed the magnesium I had to fight for every day to be given two times per day along with other requests like giving Conrad Effective Microbes I brought from home.
Conrad had been home improving every day and gaining the ability to swallow better and other problems were improving when he pulled the NG tube again. This time we went to another hospital and finally had it replaced and he is back home and again improving every day.
He is tough and although they consider him critical he has very good vital signs and is happy to be back home.
If you are hospitalized you may or may not be able to exercise your wishes in treatment. I was flabbergasted at how hard it was to be able to have simple things.
We are now faced with finding private nursing as two companies will not let us provide hydration IVs nor have speech therapy to help him regain his ability to swallow and to stand under hospice. I know people who recover in hospice and thought a patient had rights to some care. We are asking for IV hydration as he cannot swallow at this point and needs it. We have found an organic meal replacement which we use along with other nutrients.
We can tell you first hand how illogical and problematic home care, palliative care, and hospice care are to arrange if you do not fit the usual profile and guidelines.
I want Conrad to improve and get better and feel he certainly can but the great "gods" of the medical establishment insist I must face the facts. I have other facts. People recover.
This has been the most challenging, painful time of my existence as we face Conrad's health problems and also face up to the harmful and inflexible broken medical system.
We have found kind and supportive doctors at this point, three in fact that we hold dear, who made and are making life better for us. There have been a few nurses that have meant the world to us in the understanding and true comfort they offer us. But our message is these circumstances that life has been made so much worse by the system of hospital care and home care dictated by the government and not by patients or the caregivers.
We have the help of family and friends and the prayers of many, all of which we cannot do without and we will find a way to get Dr. M the help he needs from the professional and kind caregivers. I want him to have the care and love he gave to others all these years.
Just so you know we are also heartbroken in having to leave our wonder patients so abruptly and miss them deeply.
More later, Coleen