It's been a busy last few days. Thursday night I went with my husband to Washington, DC for a family bar mitzvah. We were having a really nice day at the Smithsonian Art Museum when we sat down for lunch and I noticed that I had several voice mails.
It turns out they were from my brother's nurse practitioner. Mybrother had been violently throwing up, his eyes were going to the back of his head and he said he thought he was dying. So they sent him to the ER. Unfortunately, they sent him to the ER for the community hospital that is right next door to the nursing home. Many times, I had mentioned to the staff, and had put into his chart, to not send him there because I knew how lousy the care was.
It took me maybe five attempts to talk to a doctor from the ER. Meanwhile, we took a 45 minute cab drive back to the hotel. I travel somewhat frequently to DC for my job and know what a nightmare it is to get a flight out of the city on a Friday night, so I figured we needed to rebook right away. The airline was really nice about it and didn't charge us extra. I finally reached the doctor and he told me it was just some kind of stomach infection, and that my brother would be discharged later in the day, that I didn't need to come home.
We went out and got some wine to celebrate, and then took a nap at the hotel. I was woken up by another call from the doctor that said since my brother was in afib and his heart rate was 120, that he was going to keep him in overnight. I started to get worried, because I know what happens when they start to monkey with the afib medication, my brother's blood pressure drops and then he gets into big trouble. I was worried, but I couldn't get a flight that late anyway.
I called in the morning. I was told to call an hour later because of the shift change. Again, several phone calls later, I finally talked to the doctor. She told me that his blood pressure was in the low eighties, but other than that he was "doing fine". I decided to go to the bar mitzvah in the morning and come home in the afternoon.
Which is what we did. Within 10 minutes of getting into my brother's room, he starts complaining of getting hot, gets extremely short of breath, and starts to twitch. I go running out of the room and the nurse puts him on oxygen, takes his temperature, and notes that he has a fever. After another episode about 10 minutes later, I ask for a doctor. He is coughing constantly. Eventually a nurse practitioner comes in and tells me there is no doctor on call. I suggest that he may have pneumonia as a secondary infection and ask that he get an xray. Then we go home, with me fully expecting to get a call in the middle of the night that they have put him into intensive are. I kept my cell phone next to my pillow.
Did I mention that it was also my birthday?!!!
Today we went to visit him. After three requests to see a doctor, she finally arrives. It turns out that they don't know what's wrong with him at all, except that he is septic, which is life threatening. They put him on antibiotics last night and he seems to be responding, but he's not yet out of the woods. I can't believe they didn't call me to tell me.
I was pretty angry. I told the doctor that it was not my job to figure out he was septic or to notice that he was feverish and out of breath. I told her that the nurses didn't even seem to know what they were treating (the nurse this morning told us he was in the hospital for a bladder infection). It's not my job to put him on oxygen when he needs it. I told her the nurse practitioner was ok and seemed to know what she was doing, but that the nurses seemed like nice people but were totally out to lunch. She said she would speak to them and ask them to keep a better eye on him since he couldn't advocate for himself.
We talked about physical therapy but they don't offer it at the hospital on the weekend unless you are in the ICU!! She said she would ask the nurse to get him in a chair. I hope they will order physical therapy for him at the nursing home, because whenever he gets bedridden, he deteriorates rapidly. Then I asked if he was getting respiratory therapy (he has a bad cough with some fluid in the lungs). She pointed to the device that you breathe into once an hour. I told her he was not going to do that unless someone stood over him. The doctor nodded her head. She said she didn't think he needed a nebulizer, but that she would order chest compressions.
I am having a difficult time understanding why I am having to advocate so much, this was all run of the mill treatment at the hospital that he should have gone to.
I plan to call the nursing home practitioner on Monday and let her know what has happened and why it is so important for him to be sent to the other hospital. If necessary, I will have to move him there, which is going to cost an arm and a leg, and is very disruptive to his care. I will have to weigh the disruption into my decision.
Meanwhile, this has all been rather disruptive in my and my family's life. I am supposed to go with my family for a week long trip to Miamion Thursday. It's the first time I didn't buy trip insurance in a long time because he has managed to stay out of the hospital for two years. His timing in impeccable, in the last 7-8 years, he has wrecked at least 4-5 vacations. This will be two within a week! It's not his fault, but it sure is a drag. The worst part is even if I go on vacation, then I have to worry that something is going to happen when I'm gone. And this experience has proved that if I'm not there to advocate for him, he can literally die. I kind of dropped that anxiety in the last 6 months and now it's back.
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