Hospice! & Seizure
My daughter was discharged from UCSF on August 24th. We were given hospice care for my daughter once we got home. There were three ladies waiting for us. They say hi with hugs and kisses... kind of like family. I did not like the fact that my daughter was being in the care of hospice. To make this short, I was flustered that I had told them that I did not want to have so many people here at home, I did not want my home to be a hospital. Needless to say that the competence level was questionable, they told me it was because she was a young person and they were not used to it. Besides, she had TPN and they don't usually provide that to patients. It was a whole ordeal for them to put this together.
My daughter was not feeling any better, she started to get swollen from her stomach and she was not able to go to the bathroom. They kept saying they did not hear any bowel sounds. One of the nurses said that she was close to passing away because there were no sounds on her intestines. I got upset, I felt useless, felt angry and I did not want to hear it. Seeing tat she was not having any bowel movement they offer us to take her to the hospice facility where they said they had the medications to help her empty out. I had to try to help her, my daughter seemed worried and in pain. It was a HELL of an experience. Remembering makes me so upset... but important tings to say is that whatever she was eating it would not go through because cancer had spread in her intestine... going up her esophagus. Hospice decided to give her steroids to "shrink the tumors" so she could pass down the food. But what really happened is that it made her sooooooooooo hungry that she ate and puke, ate and puke, ate and puke... rested for a little bit, slept a little and was starving all the time. I was miserable seeing my little girl go through this mess. Te service was deplorable, on a weekend they only had one nurse to see all the patients they had. I asked for my daughter to be dismissed and they threatened to file charges against me!! What!!? I told them that I would take responsibility for everything as long as my daughter was discharged from their facility. Went home and wished I had not put my daughter in that hell.
Quoting my daughter:
"I'm doing what Tupule ad Goldsby said... No matter how much I puke it out ... keep putting the food in.
She was home Saturday night the 30th, my sisters had come from Washington, my daughter seemed sad and overwhelmed. She knew something was up! Seeing her sister back from her mission and now all of my sisters' families were here... she knew that it meant something...
My heart wanted to stop at the look she gave me when we encountered our eyes... she was saying to me ..."This is it mom, I don't want this mom... I am not happy mom... " her pain was expressed completely in her eyes.
My sisters and their families left on Monday the 31st. My daughter rested for a long time after they left. She was exhausted. She was eating everything she could... and everything kept coming out. It was midnight when I told her to stop eating, that I needed for her to rest... she said she would... then... all of the sudden she seemed to go blank in her eyes... she kept moving her head to the left slowly like if she was dazed, I asked her what was wrong, she did not respond, her sister was right next to her and she ask what is wrong and she said... 'pretty lights" as she kept moving her head all the way to the left... then she started jerking and her hands twisted and I flew across rooms to ask my husband to come and he did ... he held her carefully but tightly in order to let her know we had her. I called 911 the ambulance came within five minutes... and they took her to the hospital. This was one of the scariest things I've seen in my life ... again feeling without power.
The hospital said they had controlled her having seizures and that she was to go back to hospice... NO WAY!! My only way out was to take her back to UCSF. After I had a not so friendly conversation with a woman Doctor, she said she would get an ambulance to pick my daughter up to take her to UCSF!
My daughter was not feeling any better, she started to get swollen from her stomach and she was not able to go to the bathroom. They kept saying they did not hear any bowel sounds. One of the nurses said that she was close to passing away because there were no sounds on her intestines. I got upset, I felt useless, felt angry and I did not want to hear it. Seeing tat she was not having any bowel movement they offer us to take her to the hospice facility where they said they had the medications to help her empty out. I had to try to help her, my daughter seemed worried and in pain. It was a HELL of an experience. Remembering makes me so upset... but important tings to say is that whatever she was eating it would not go through because cancer had spread in her intestine... going up her esophagus. Hospice decided to give her steroids to "shrink the tumors" so she could pass down the food. But what really happened is that it made her sooooooooooo hungry that she ate and puke, ate and puke, ate and puke... rested for a little bit, slept a little and was starving all the time. I was miserable seeing my little girl go through this mess. Te service was deplorable, on a weekend they only had one nurse to see all the patients they had. I asked for my daughter to be dismissed and they threatened to file charges against me!! What!!? I told them that I would take responsibility for everything as long as my daughter was discharged from their facility. Went home and wished I had not put my daughter in that hell.
Quoting my daughter:
"I'm doing what Tupule ad Goldsby said... No matter how much I puke it out ... keep putting the food in.
She was home Saturday night the 30th, my sisters had come from Washington, my daughter seemed sad and overwhelmed. She knew something was up! Seeing her sister back from her mission and now all of my sisters' families were here... she knew that it meant something...
My heart wanted to stop at the look she gave me when we encountered our eyes... she was saying to me ..."This is it mom, I don't want this mom... I am not happy mom... " her pain was expressed completely in her eyes.
My sisters and their families left on Monday the 31st. My daughter rested for a long time after they left. She was exhausted. She was eating everything she could... and everything kept coming out. It was midnight when I told her to stop eating, that I needed for her to rest... she said she would... then... all of the sudden she seemed to go blank in her eyes... she kept moving her head to the left slowly like if she was dazed, I asked her what was wrong, she did not respond, her sister was right next to her and she ask what is wrong and she said... 'pretty lights" as she kept moving her head all the way to the left... then she started jerking and her hands twisted and I flew across rooms to ask my husband to come and he did ... he held her carefully but tightly in order to let her know we had her. I called 911 the ambulance came within five minutes... and they took her to the hospital. This was one of the scariest things I've seen in my life ... again feeling without power.
The hospital said they had controlled her having seizures and that she was to go back to hospice... NO WAY!! My only way out was to take her back to UCSF. After I had a not so friendly conversation with a woman Doctor, she said she would get an ambulance to pick my daughter up to take her to UCSF!
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