Tonight's picture was taken in May of 2002. Mattie was a month old. Ironically Mattie was napping here. Which was something he rarely did. Or let's put it this way, as a newborn, he may have napped, but that ended very quickly. I remember new parents telling me about how much they got done during two hour naps. I always was in amazement, because it could take me two hours to try to calm Mattie down enough to nap. Then if he napped it was like 20 minutes at a time. Mattie somehow knew that his time with us would be fleeting, so therefore he wasn't going to spend it napping.
Quote of the day: Today's coronavirus update from Johns Hopkins.
- number of people diagnosed with the virus: 1,831,730
- number of people who died from the virus: 106,180
Today was a day for the books. I felt like I was on the phone most of the day. Talking to doctors and nurses in California, who are overseeing my dad's care. It is very hard managing someone's medical treatment from afar, and even worse during a Pandemic. My mom is not allowed to visit my dad in the hospital, and therefore there is no family member with eyes on my dad. One thing I know, is every patient needs a family advocate. Without it, lots of things slip through the cracks in a hospital system.
So far, every nurse my dad was assigned has been absolutely delightful! Professional, efficient, and also caring. They are spending a lot of time talking to me on the phone and don't mind multiple calls and questions throughout the day. Peter and I know that having a good nurse can make all the difference in the world, as it is these professionals who provide on the ground care. If you want to know how a patient is, all you have to do is ask a bedside nurse. They are much more clued in than the doctors.
I found out that my dad was scheduled to be discharged this afternoon. So I called to talk with his nurse to find out how he was doing. The nurse told us that my dad was put on oxygen today because his oxygenation level fell. They did an x-ray of my dad's lungs and they are fine. So the thinking is they have over hydrated him with IV fluid and this could explain the swollen hands, wrists, and fingers. Not to mention the drop in oxygenation. So my dad was dealing with that, then they removed his catheter and were waiting to see if he could urinate on his own. Then the nurse told us that my dad is very weak. Weak for many reasons.... his age, having a UTI for most likely a few weeks, and then having to have emergency kidney stone removal. Needless to say, my dad is too weak to truly walk and function independently.
Naturally the question begs itself... how could they want to discharge my dad in this state!!!??? Make a long story short, by the time I called several people and lit up the hospital, my dad was not discharged today. In fact, the chief of rehab is coming to assess my dad tomorrow to determine the discharge plan. My hope is that he will transfer my dad to the rehab floor of the hospital, to help my dad regain his strength and ability to do activities, so that he can return home safely.
I am saddened that my dad's hospital doesn't have a patient advocacy division. Patient advocates are lifesavers and serve as liaisons between patients/families and health care providers. All I know is whenever we had a problem at Mattie's hospital, I called our patient advocate. When she walked onto our pediatric floor, hospital staff would be jumping. Unfortunately there are no advocates to turn to at this California hospital. However, I landed up talking to the charge nurse of my dad's hospital unit. She was wonderful, and reminded me of Mattie's sedation nurse! Even sounded like her. She actually read me doctor, nurse, and physical therapist notes placed in my dad's file today. She was unbelievably helpful and hearing this information allowed me to determine who I need to speak to tomorrow regarding getting a rehab plan for my dad.
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