Sorry... it has been several days since I posted. We are just completely drained and exhausted around here. Don has been dropping me off at the hospital early in the morning and I have been there helping take care of Vernell. You have no idea how many times they can mess up her special diet. Almost every tray I saw delivered has a mechanical soft diet which is a dangerous step beyond the pureed diet that we KNOW works for her. Vernell has been very confused lately and if they give her the wrong foods, she doesn't remember that she should not eat them. Getting any pieces of food into her stomach that are not in pureed form will cause her an episode of vomiting, which leads to dehydration, etc...
The doctor discharged her from the hospital today. All of her acute illnesses have been dealt with and all that can be done now is to continue to manage all of her chronic conditions. Her list of maladies was pretty extensive before this hospital admission and now we have more for the list. I am trying to get a copy of her medical records so I can see for myself the details that the doctor left out. I don't know what any of her new official diagnoses are at this point. I do know that her low blood pressure is now a chronic condition that can not be cured, but managed with medications. The neurologist that consulted mentioned autonomic dysfunction. When I researched it to give us greater understanding, I told Don that I was certain that Vernell's symptoms fall into the Multiple Systems Atrophy diagnosis. When talking with her attending doctor the other day, she used the term Multiple System Atrophy. Now I see why our primary care dr keeps telling Don and I that we should have a career in medicine.
We do not have a clear understanding of what comes next in this process. Vernell was discharged to Mesa Christian for physical rehab. This is the same place she has had rehab after each hospital stay. The Director of Nursing, Kathy Wheeler, knows us well and understands Vernell and how to work with her personality. Vernell arrived there this evening, so Kathy did not get to see her. However, Kathy did get to peek at the admissions paperwork. The nurse said that Kathy's comment was that Vernell is really sick this time.... so we are anxious to talk with Kathy on Monday and see what information she can give us. I know that she will be honest about Vernell's condition and prognosis. In previous visits, Vernell was transferred to rehab to rebuild her strength and regain mobility. This time she was transferred still with the need for oxygen and still with her catheter. She does not even have core strength to hold her body in a sitting position and struggles with being able to feed herself. I pray that rehab with change this for her... but we somehow have a feeling that she will not be springing back anywhere close to where she was three weeks ago. Our emotions are on a constant roller coaster. Some moments she seems clear minded and appears to have the oomph to take on this task of rehabilitating her body. Other moments she is so far from what even resembles the Vernell that we know and she seems to have lost the twinkle of hope.
For now, we wait for Kathy to get her eyes on Vernell and give us her take on the differences in Vernell since the last time she saw her back in May.
I will let you know what we find out on Monday - it feels like an eternity away.
It is so very late as I am posting all of this.... I hope it makes sense.
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