Tonight's picture was taken on August 5, 2009. Mattie was participating in his outpatient physical therapy session. Earlier that day, he underwent a sonogram, only because I demanded testing of Mattie given the fact that he wasn't eating or drinking anything. I believed something was very wrong with him. The doctors didn't seem concerned because Mattie was only off of chemotherapy for six weeks. Any case, right before this session I got a call from one of Mattie's physicians letting me know that more extensive testing was needed as they found something on the sonogram. When I came back into this session, it took every ounce of energy I had to remain calm and present for Mattie. I learned the art form of bottling emotions and reactions back then, in order to effectively serve my role as Mattie's mom and fiercest advocate.
Quote of the day: I wish I were a little girl again because skinned knees are easier to fix than a broken heart. ~ Julia Roberts
Another letter red day in my world. My phone rang at 9am and it was my dad's rehab doctor. Apparently he went in to assess my dad, in order to see if my dad would qualify to be transferred to the inpatient acute care center. The doctor said that my dad wouldn't qualify, but instead recommended that he go to a nursing home to get rehabilitation before returning home. I argued with the doctor on the phone, after all this doctor has a two year history with both of my parents. He sees them every six months. When I asked the doctor whether he got my dad up, out of bed, and if he saw him walk, you know the answer was NO! How do you assess a patient for rehabilitation care if they are lying in bed???? I have concluded that there has to be a Medicare reason why they are not accepting my dad. Meaning, Medicare must have some sort of criteria they need to see before they will pay for acute rehab care. The doctor and the staff today said my dad is being denied this rehab care because they don't feel he could tolerate three hours of therapy a day. Which is what happens in acute rehab. It is a very intense five day a week program with PT, OT, and speech therapy.
I know about acute care quite well because in 2022, after my dad's pacemaker placement, he spent a week in acute rehab recovering and regaining strength. My dad was far more depleted in energy in 2022, and yet they accepted him to the acute rehab program back then. So this energy level line I have been given, I AM NOT buying it for a second. There must be medical data points that are used to qualify him, and perhaps his vitals and other data points are more stable than they were in 2022. But here is the thing.... patients are MUCH MORE than their data. My dad may look good on paper, but that doesn't tell you how he functions. All you have to do is get him out to bed to see that he needs support.
The next problem is that in two weeks my dad will be undergoing lithotripsy to blast out kidney stones. One kidney is done at a time, so we are talking over a month of running back and forth to the hospital. My dad's physical therapists have told me that after a lithotripsy procedure he will not be allowed to do physical therapy. So we are talking over a month of not a lot of movement. This is another big concern, which is why the next two weeks are crucial to help my dad regain strength. I tried to explain this, I tried advocating my head off with everyone and anyone. I talked to patient advocacy, the case manager, the doctors, nurses, and even the assistant chief of nursing officer of the hospital. Honestly I am very frustrated and one thing is clear, not only does our healthcare system not care to treat the whole patient, they have little to no regard for the family caregiver. We are expendable to them.
My mom and I got to the hospital around 11:30am. Of course I found my dad in bed and sleeping. I woke him up, pressed his call button, and in popped in Ida. A wonderful and compassionate nurse. I am sure it doesn't surprise you that I have a reputation on the floor already!
Any case I pleaded my case with Ida. Even though my dad is listed in his chart as a "fall risk," and therefore needs to remain in bed unless physical therapists are present, I wanted him up, out of bed, and in a chair. I also wanted to see him use a commode. Ida made that happen. My dad sat upright for six hours today and was awake. We were at the hospital for over 8 hours and I am exhausted. Yet I have to mentally prepare that at noon tomorrow my dad will be discharged from the hospital. I refuse to send my dad to a nursing home, so he is being discharged and I am NOT following medical advice. A nursing home, for a person like my dad, would be a quick beginning to his end. So my plan is to take him home. The case manager told me if it truly is too much at home for me, then I can call her in a week, and she will help get my dad placed. Nice offer, but we shall see. May God give me strength.
When I arrived home tonight at 7:30pm, I was met with thorough chaos in my street. Utility trucks were everywhere! My neighbor is doing an extensive renovation of her house, with no end in sight. We are going on over a year already of this nightmare! Several of my neighbors saw me arrive home, so they messaged me about the fact that gas and water lined were cut today. Beautiful.... chaos in every aspect of my life.
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