chubbyRN
New member
- Joined
- Nov 4, 2008
- Messages
- 1
- Reason
- CALS
- Diagnosis
- 10/2004
- Country
- PHI
- State
- Philippines
- City
- QC
Hi to everyone,
I have been reading this forum since my mother was diagnosed 4 years ago. Hers started in her right toe, then progressed upwardly always starting at the right part. Through this site I was enlightened with what is happening, will be happening to her. This site gave us more details than what the doctors can provide or willing to share to us. ALS is not well known much in my country so there's not much help to get.
I had all my mother's wishes regarding her health care when she was still able to speak, but it changed as she progressed.
For instance, she does not want a peg before, but when it was becoming really difficult for her to eat, she decided to get it. This year is her 4th year. We had her peg placed last MAY 2008. she was not in any apparatus before that. then after a week of placement of peg, she had difficulty of breathing. she's not blowing off her CO2. she went unconscious, sleeping. i asked the doctor if it was triggered by the procedure because they had a microscopic video tube put in her mouth when the peg was being done. they said it's not the procedure, it' just a coincidence that her deterioration happened at the same time. i just can't believe it.
then they suggested that they put endotracheostomy because her bp is falling, i was hesitant bec by then my mom is already conscious. they tried other means, they put her in bipap machine and that solved her problem. we stayed at the hospital for a month. then we went home, she's on bipap 24x7.
but then this september she had epsodes of breathing problem, she was intubated right at home and rushed to the hospital. she's conscious but intubated for 3 weeks and the doctor told us that she has to be put on tracheostomy bec she cant be intubated for a long time. she had nosocomial pneumonia 3 days after confinement. she was placed on tracheostomy, my mom approved it. then we can't get out of the hospital because our bills was very high, the hospital won't let us out until we pay them. so while seeking financial help here and there my mother stays in the ICU connected to a vent and fees are doubling each day.
sad story, we are still in the hospital, she had another pneumonia, nosocomial again, resistant to antibiotic. she fell unconscious last sunday afternoon. doctors told us her sodium is too high, they are correcting it with iv fluids, and antibiotic for pneumonia. they said that if the sodium is corrected and she's still not awake, it could have been stroke because of emboli. bec she isn't moving. she's taking enoxaparin, plavix, betablocker. if it's not emboli, they said it could be sepsis. and she only respond to pain now. not to voices anymore. it was just sudden, we were still communicating with her last saturday.
if it's stroke, or sepsis, will she still wake up? what do we do? i don't want to pull any plug just so she could go. i've seen people pulled out and it was devastating. hope you can share some inputs, any question is also accepted. thanks to everyone.
I have been reading this forum since my mother was diagnosed 4 years ago. Hers started in her right toe, then progressed upwardly always starting at the right part. Through this site I was enlightened with what is happening, will be happening to her. This site gave us more details than what the doctors can provide or willing to share to us. ALS is not well known much in my country so there's not much help to get.
I had all my mother's wishes regarding her health care when she was still able to speak, but it changed as she progressed.
For instance, she does not want a peg before, but when it was becoming really difficult for her to eat, she decided to get it. This year is her 4th year. We had her peg placed last MAY 2008. she was not in any apparatus before that. then after a week of placement of peg, she had difficulty of breathing. she's not blowing off her CO2. she went unconscious, sleeping. i asked the doctor if it was triggered by the procedure because they had a microscopic video tube put in her mouth when the peg was being done. they said it's not the procedure, it' just a coincidence that her deterioration happened at the same time. i just can't believe it.
then they suggested that they put endotracheostomy because her bp is falling, i was hesitant bec by then my mom is already conscious. they tried other means, they put her in bipap machine and that solved her problem. we stayed at the hospital for a month. then we went home, she's on bipap 24x7.
but then this september she had epsodes of breathing problem, she was intubated right at home and rushed to the hospital. she's conscious but intubated for 3 weeks and the doctor told us that she has to be put on tracheostomy bec she cant be intubated for a long time. she had nosocomial pneumonia 3 days after confinement. she was placed on tracheostomy, my mom approved it. then we can't get out of the hospital because our bills was very high, the hospital won't let us out until we pay them. so while seeking financial help here and there my mother stays in the ICU connected to a vent and fees are doubling each day.
sad story, we are still in the hospital, she had another pneumonia, nosocomial again, resistant to antibiotic. she fell unconscious last sunday afternoon. doctors told us her sodium is too high, they are correcting it with iv fluids, and antibiotic for pneumonia. they said that if the sodium is corrected and she's still not awake, it could have been stroke because of emboli. bec she isn't moving. she's taking enoxaparin, plavix, betablocker. if it's not emboli, they said it could be sepsis. and she only respond to pain now. not to voices anymore. it was just sudden, we were still communicating with her last saturday.
if it's stroke, or sepsis, will she still wake up? what do we do? i don't want to pull any plug just so she could go. i've seen people pulled out and it was devastating. hope you can share some inputs, any question is also accepted. thanks to everyone.