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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.
 

vmd

Senior member
Joined
Apr 27, 2007
Messages
581
Reason
Other
Country
US
State
idaho
City
N/A
I can't offer much advice, but I can offer my prayers.
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
I am so sorry about what is happening to your mom and yourself! Have you read all my posts with katekan in the careivers forum "Home Care for Trach - Info?" There might be something there that may help.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
What a tragic situation. In the US, patients cannot be kept in a hospital against their will, but I have no idea how the laws read elsewhere. But it does sound as if the hospital is where she needs to be right now.

I think it is impossible even for the most brilliant doctors to predict what will happen with stroke, if that's what happened ... but they are the only ones we have to rely on. I think you will need to let them guide you. I'm praying for you both, and hoping the doctors will lead you to the best outcome for your mom.
 

katekath

Distinguished member
Joined
Oct 2, 2008
Messages
148
Reason
CALS
Country
SGP
State
SG
City
SG
chubbyRN, I am so sorry to hear about your mum. My mum is on a trach and I had previously asked for advice for trach home care.

You can refer to this thread: https://www.alsforums.com/forum/showthread.php?t=6488 for Home care for Trach as Joel mentioned.

My mum got a trach after suffering from respiratory failure at home. It was also very sudden for us. One day she was okay and doing everything by herself and the next day, she needs help for almost everything. Getting the trach helped my mum a lot. She is now able to breath, though her O2 level can still fall below 90% when she sleeps. She used to be on a bipap and oxygen, but was weaned off both as of today. I am skeptical about it, even though her blood tests were okay. She still has the oximeter attached, so I am watching her to make sure she is breathing fine. She told me the bipap made breathing uncomfortable for her due to the pressure applied and does not want to be placed back onto it, but chances are, she will need it eventually.

I don't know the exact medical care system over on your side, but is it possible to ask to pay the bills by installments? Do you have a social worker advising you?

As for info on stroke, I am sorry I cannot help much. Does your mum has a specific doctor looking after her or a team of doctors are doing so? From my experience, having a team of doctors can be rather confusing. I can get different info and plans for my mum's care from different doctors and it gets really frustrating.

Please know that your mum and you are in my prayers and thoughts.

Wan
 
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