Saturday, March 5, 2022

Saturday, March 5, 2022

Tonight's picture was taken in March of 2007. We took Mattie to Key West for spring break and one of the stores we stopped at had lots of trinkets and this big fellow made out of sea sponges. Mattie thought this was beyond neat. When I look at this moment in time, Mattie looked happy and the picture of health. It would never have crossed my mind that a year later he would be diagnosed with cancer. 

Quote of the day: Listening is being able to be changed by the other person. ~ Alan Alda

I got to the hospital at 9am this morning. Not sure how I did that since I am exhausted. When I got to my dad's room he was very disoriented and in addition to that received NO breakfast. Fortunately I brought him breakfast from home. When I told the nurse he received no food, she really had no idea why. She then gave me a menu and I called dining services. You will love this, there was NO RECORD of him being a patient in the hospital and therefore they did not know to bring my dad food. Honestly it was like one more layer to the dysfunctional cake. I wish that was where the nightmare ended. It was only the beginning. I should mention that when I actually got to the hospital and entered my dad's room I wasn't only dealing with his disorientation and no food issue, but a representative from the pacemaker company was there and testing his unit. So I had to deal with him and help my dad understand just what on earth this guy was talking about, as I have to admit it is hard to understand that the pacemaker is like a computer that records data and then sends it wirelessly to a home base that will be kept by his night stand. 

My dad was very confused, he thought I spent the night in the room with him and then told me he was going home today! He said that they were talking about discharging him. I said NO WAY, and that I had to address this issue. Then in walked the hospitalist. This woman and I are like oil and water. She told my my dad's vitals looked good and he was cleared to go home. I then said that there is NO WAY he could go home. That he can hardly move from back pain as a result of the procedure yesterday and also because he can't use his left arm until the pacemaker's wires fully attach to the heart, which I am told takes a month. Without use of both arms and hands, my dad can't use his walker, he can't hold onto stair railings, and as I witnessed today, he can't even get himself out of bed or go from a standing to sitting position. A BIG BIG problem. 

The hospitalist isn't used to be openly challenged. Before continuing she said that she was surprised my dad got the pacemaker inserted yesterday. She wanted me to know that if it wasn't for my advocating, it wouldn't have happened. I noted the compliment but was too focused on her poor decision to discharge my dad. In any case, I told her I knew how to work the system to get my dad a pacemaker, and likewise she needs to work the system to figure out a way to prevent him from getting discharged. So to do this, she recommended a physical and occupational therapy consult. I agreed, but she still told me he would be discharged on Sunday. At which point I told her that she and I would be having this same battle again on Sunday morning. 

In any case, the physical therapist came to consult on my dad's case. It took her about two minutes to realize that he is in NO shape to go home. She feels it isn't safe. She told me she recommended acute rehab care for two weeks to a month, before transitioning him home. That sounded plausible and I was happy with the notion of that plan because given my dad's needs I am not sure I can physically manage him right now. In any case the therapist got him up from the bed and into a chair for about two hours.

Later in the afternoon, I was introduced to a machine called the Sara Stedy. A Sara Stedy is a mobile active lift with a safe working load of 400 lbs. The occupational therapy consult came in and used this machine to help move my dad from the chair back to bed. Funny comment... my dad said to me.... we need one of these!

In the midst of all of this I wrote a long email to the care manager for my dad's hospital unit. I felt he needed to be aware of all the problems we were facing. Later this evening, he came to find me and brought me back to his office to chat. He listened and apologized, though I am not quite sure change will actually happen to make care better. But here is the kicker. He showed me the clinical notes on my dad and the recommendation is that he get rehab in a skilled nursing facility, in other words a nursing home. Apparently the clinical staff at the hospital do not feel like he will qualify for acute care. I view acute care as a more hopeful, aggressive form of therapy that will help transition a patient home. My feelings about skilled nursing facilities are not positive. I have an appointment tomorrow with the acute care folks from the hospital and I want to learn why they feel like they can't accommodate my dad. Needless to say this news really set me off and I have debated since I heard it what I should do with my dad. 

Of course what also bothers me to NO end is why didn't the doctors prepare me for any of this? They made it sound like my dad would be in and out of the hospital and would return home with no problem. However, all they had to do was just look at my dad to know that he needs a walker to move safely about. So how on earth can he use a walker and move about if he can't put any weight on one arm for a month? This piece of information would have been important to know up front. I don't like surprises, especially when good communication and understanding the WHOLE patient could have avoided this shock. The problem is doctors for the most part don't worry about patients holistically or the consequences of medical treatment on their patients' quality of life. You can't treat a patient in a silo and unfortunately that is exactly what happened in this case.