I came home from a trip to South Beach yesterday. The trip was a big success in that I did not sit and worry about my brother too much, which is a big move forward for me. In the past, I would have been calling every day and obsessing about his health, especially since he just got out of the hospital. But I was able to let it go, which I consider essential for my own health these days, and the mental health of the rest of my family, as well.
My daughter, who is home from her first year from college, came as well. The weather was really strange, half the sky was pitch black and it was downpouring, the other half, the weather coming in was sunny. It made the lighting beautiful, but there were no rainbows to be found.
My brother was in the bathroon when we showed up. He was by himself, and actually, I was gratified to find out he could go on his own. But he was having some trouble keeping his pants up,and he had to go get a CNT to help him with his diaper and I think she might have helped him put on a belt too.
As soon as we got to the big sitting room, he started telling me about his health, that he was most ok, but still suffering from some kind of intestinal issues. I will have to call the nurse practitioner tomorrow to see what that's all about. It would make sense, in that the hospital doctors thought he had a viral gastrointestinal infection, and those can take a long time before they go away. However, anything with my brother that doesn't go away usually can get blown up into a big deal, so I want to stay on top of it.
Thursday, May 30, 2013
Monday, May 20, 2013
discharged!
I was very surprised to find out that my brother is getting discharged tonight. It turns out now his doctors think that he's not septic. All the heart issues, shortness of breath and fever they think was due to dehydration because he threw up so much and so violently.
I have had a fairly good experience with the doctors, who seem to have the time to talk to you. Some of the nurses are another story however. Even tonight, when they called me, a woman who hardly spoke English started talking about voiding (he needed to pee before they would let him go) and I had to ask her to repeat herself three times before I could understand what she was saying.
I did have to ask them to test his blood pressure upon standing up because it drops a lot and then he faints. His blood pressure did drop, from 139 to 104, but they seemed to think it was ok. I took his blood pressure very regularly when he was living in assisted living, and most of the time he was in the nineties, so I think he will be ok.
I have a hard time understanding why I have to point out that they need to do such tests before release.
The only good thing to come out of this is because he has lost a lot of strength by being immobilized, that he now has gotten physical therapy ordered for him. This is a person who should have daily physical therapy for the rest of his life. I wish the nursing home had a program where they forced people to do real exercise.
I had canceled out condo reservation for our Miami trip because I assumed that we wouldn't be able to go. Now I am trying to resurrect it, knowing that at any moment there could be a serious relapse, but we figure that we just can't live life like that.
I have had a fairly good experience with the doctors, who seem to have the time to talk to you. Some of the nurses are another story however. Even tonight, when they called me, a woman who hardly spoke English started talking about voiding (he needed to pee before they would let him go) and I had to ask her to repeat herself three times before I could understand what she was saying.
I did have to ask them to test his blood pressure upon standing up because it drops a lot and then he faints. His blood pressure did drop, from 139 to 104, but they seemed to think it was ok. I took his blood pressure very regularly when he was living in assisted living, and most of the time he was in the nineties, so I think he will be ok.
I have a hard time understanding why I have to point out that they need to do such tests before release.
The only good thing to come out of this is because he has lost a lot of strength by being immobilized, that he now has gotten physical therapy ordered for him. This is a person who should have daily physical therapy for the rest of his life. I wish the nursing home had a program where they forced people to do real exercise.
I had canceled out condo reservation for our Miami trip because I assumed that we wouldn't be able to go. Now I am trying to resurrect it, knowing that at any moment there could be a serious relapse, but we figure that we just can't live life like that.
Sunday, May 19, 2013
back to the hospital
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.
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.
Tuesday, May 14, 2013
a nice spring dinner and then some
Today is Tuesday. It was beautiful out today, in the eighties. I took my brother out for dinner to a shopping center where I knew we could sit outside. I ordered an egg salad sandwich and because they ran out of egg salad, they gave me a bunch of upgrades, including two little cakes, one for me and one for my brother. I also was able to get him a smoothie and he drank the whole thing. It was a very nice evening and we were pretty relaxed.
But I think he ate too much. All of a sudden he says, I have to go to the bathroom, and then boom, he poops in his diaper. He was pretty upset, and then, of course we had to leave. I apologized for not getting him to the bathroom in time (frankly, I don't know how I was going to get the diaper off, and I didn't have another one, anyway) and he was very embarrassed. He also smelled up my car pretty badly on the way home. I am still airing it out.
I am thinking hard about how I am going to be able to manage him at my son's wedding next summer. I do not want to have to spend a lot of time taking care of him at the wedding. I am thinking about hiring someone to be with him all day, and it's going to be hard to find someone who knows how to take care of him. Well, one day at a time.
But I think he ate too much. All of a sudden he says, I have to go to the bathroom, and then boom, he poops in his diaper. He was pretty upset, and then, of course we had to leave. I apologized for not getting him to the bathroom in time (frankly, I don't know how I was going to get the diaper off, and I didn't have another one, anyway) and he was very embarrassed. He also smelled up my car pretty badly on the way home. I am still airing it out.
I am thinking hard about how I am going to be able to manage him at my son's wedding next summer. I do not want to have to spend a lot of time taking care of him at the wedding. I am thinking about hiring someone to be with him all day, and it's going to be hard to find someone who knows how to take care of him. Well, one day at a time.
Saturday, May 11, 2013
chairs, part 2
Well, I got up enough nerve to call the nursing home about the chairs. I pretty much got blown off, they said they knew that it was bad that they weren't yet out, but until they finish off the construction on the new patio, that it wasn't safe to put any out.
Nursing home 1, me and my brother, zero
Nursing home 1, me and my brother, zero
Monday, May 6, 2013
chairs
I'm feeling a bit guilty. They took away the ability to sit comfortably outside at my brothers nursing home. It started last fall, when they tore up the front entrance, which used to have a lot of benches and chairs. The patients would sit outside and watch the cars come and go, dropping off and picking up people. It wasn't exactly beautiful, but there was a sense of activity.
Apparently some people fell because the concrete was on a slant. There was also a problem with people "wandering" off the property. So they dug it up, and supposedly they are building a side courtyard which looks like it might be pleasant, but it's walled in with a locked gate. Meanwhile, it's not done and the weather if finally getting warm.
My brother is a bit stir crazy after being shut in for long periods of time during the winter, so he has been sitting out in front, using his walker as a chair. Several people have been doing it, and another patient recently fell. It could be argued easily that providing chairs is safer than having people sit in their walkers, which are not designed for long term sitting, and after all, have wheels on them. The new "garden" is supposed to open May 20, not soon enough.
My brother is not new to falling. Several years ago, I came to the conclusion that is was better for him to take risks and be willing to fall, and possibly severely hurt himself (he has broken bones, and believe me, it is no joke to break a bone when you have cerebral palsy and don't heal well or quickly) than to stuck in a wheel chair or inside. He totally agrees with me.
Meanwhile, the reason I feel guilty is that I am supposed to call the person in charge and complain, and try to persuade her to put few chairs out in front. I keep on forgetting to do it, I get busy at work and I don't do it. I need to remember to do it tomorrow.
Apparently some people fell because the concrete was on a slant. There was also a problem with people "wandering" off the property. So they dug it up, and supposedly they are building a side courtyard which looks like it might be pleasant, but it's walled in with a locked gate. Meanwhile, it's not done and the weather if finally getting warm.
My brother is a bit stir crazy after being shut in for long periods of time during the winter, so he has been sitting out in front, using his walker as a chair. Several people have been doing it, and another patient recently fell. It could be argued easily that providing chairs is safer than having people sit in their walkers, which are not designed for long term sitting, and after all, have wheels on them. The new "garden" is supposed to open May 20, not soon enough.
My brother is not new to falling. Several years ago, I came to the conclusion that is was better for him to take risks and be willing to fall, and possibly severely hurt himself (he has broken bones, and believe me, it is no joke to break a bone when you have cerebral palsy and don't heal well or quickly) than to stuck in a wheel chair or inside. He totally agrees with me.
Meanwhile, the reason I feel guilty is that I am supposed to call the person in charge and complain, and try to persuade her to put few chairs out in front. I keep on forgetting to do it, I get busy at work and I don't do it. I need to remember to do it tomorrow.
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