Cyndie spent the night. We awoke to texts of another hard night, but not quite as bad as the previous night. Sue was angry and agitated for most of the night, and did not sleep much. She was mildly violent (as violent as she could be in her state), and was forced to wear the mitten almost all night.
Chad, Kim, and Wade all headed in and arrived around 8:30AM. Cyndie gave us the rundown of the night, but summarize it to say that it was not pleasant. a lot of commotion, in and out of doctors as they tried to calm Sue as well as do their tests and updates, etc.
She seemed extremely tired and slept through most of our talks – and then just continued to sleep. Cyndie and Wade went back home, and Sue still slept. The speech therapist came in and let her sleep. Doctors, nurses, shakey-shakey guy – they all came in and she pretty much slept through it all. She woke up (barely) for a status test and then was right back out.
~12:30PM – They removed her NG tube (the food tube in her nose), but left the nasal trumpet in to help with her breathing as she slept. She continued to sleep.
~3:35PM – Sue is still sleeping, but she had the biggest sneeze ever a minute ago and scared the bejeezus out of Kim and me. She still didn’t even wake up. It sounds terrible, but now we can’t stop laughing. Man, that was a big sneeze. It even stopped her snoring, so it must have felt good somewhere in her dreams.
~5:45PM – Sue is still sleeping! She must have really needed this. However, it poses and interesting problem for us. One, she has clearly flip-flopped her schedule and will be up all night. With her “sundowning” episodes, does it make sense for anyone to stay here with her (knowing that they will just be up all night fighting with her), or do we all go home, leave her with the doctors and nurses, and arrive fresh and ready tomorrow for her review and all of the PT that she has been missing? Logic says we go home, but the heart says we stay her with her. The question looms largest on Kim. I feel bad for her having to make the decision…
~6:30PM – We have left for the night. Possibly. Probably. We’ll see. Sue is still sleeping soundly, so we decided to head home, pick up the dog from the kennel, have dinner with the family, do some laundry, and go to bed at a reasonable hour. We need to start reassembling our life into a pattern. This is a marathon, not a sprint, so now that Sue is stable we need to start following a schedule so that we all succeed – her and all of us. No good can come from all of us burning out. It still feels weird to not be there though…
~8:30PM – We made it almost two hours before a guilt-ridden phone call was required. The desk nurse let us know that Sue was fully awake and active (of course), but that the room nurse, Nurse B, was busy until 9:00PM, so we would have to call back.
~9:15PM – Kim called back in and everything was fine. Sue was awake, but they were going to give her sleeping meds, so she would not be awake for much longer. We made the right call, and are headed to bed shortly.
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