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katekath

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Carolan:

I don't have a good impression of medical care in SG as my friend used to be a RN and knows all the inside-outs. So far this is what I can conclude about medical care in SG for subsidized patients:

  1. They don't get to choose doctors so they can't fire your doctor no matter how bad he/she is.
  2. They wait terribly long to see docs and can only "cut the queue" when something bad is happening
  3. They get attend to by only housemen or medical officers when warded and never get to see the senior consultant unless the patient went through a near death experience caused by the junior docs/nurses
  4. Docs will allow researchers to "interview" patient without consulting family/patient consent.
  5. Complain letters to the hospital management don't work. Sending them makes things worse.

Certain local hospitals staff "jump to the rescue" when a complain letter is sent to the management (most don't care). There are good doctors in private practice and if you are lucky, that good doc happened to be your family doc. If not, be prepared to spend a LOT of money to get quality care.

I was even told the first hospital my mum was warded in was nicknamed the "patients-don't-go-home hospital" by local medical staff. I don't mean to speak so bad of the medical care, but this is exactly what I experienced.

Anyway, regarding the medication for secretions, I cannot rem those my mum takes, but I know she takes 2 types of pills for that. I will be sure to ask about Robinul and Scopolamine transderm patch the next time I see the doc.

Also, the nurses at the rehab hospital found that excessive suctioning does promote more secretions for my mum, so they only do it when she can no longer tolerate the secretions and when the gurgling sounds from the trache are getting too loud.

Connie:

Thanks, but as Joel pointed out, I'm from SG. So what you mentioned don't apply for me.

Joel:

I am glad your cold is gone! And thanks for the cleaning procedures. Does having the silicone based trache make you more comfortable regardless of the more frequent change? I don't see any brushes that comes with the trache, but the nurses use sterile Q-tips.
 

joelc

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I had to go to the silicon tubes because the usual ones they like to use were the wrong shape for my trachea. Yes, these are very much better.
 

katekath

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Wrong shape? I never really thought about that. How did you know that? Via the ENT specialist or was it due to any discomfort you felt?

Wan
 

joelc

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It was discomfort on my part. The tube was rubbing on the wall of my trachea and it was starting to get very sensitive so every movement caused me to cough. Since using this new tube I have not had any problems - it has been great! I talked to my RT about the problems and she recommended this new tube.
 

katekath

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Oh dear, I am glad you got it changed. So far I have not observed that for my mum, so I think it should be fine for her.

Her appt with her neuro got postponed again. I hope she will finally get to see him on Fri.

I should have more questions then. :)
 

katekath

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Update from Neuro

So my mum got to see her neuro last Friday, just before everywhere shut downs for the Chinese New Year.

I talked to him about my concerns regarding resp. problems and he told me my mum is at the early stages of ALS and because she is sleeping well, we need not worry too much about it. I asked about whether any tests need to be done and he said no. He also mentioned the ENT specialist will be in charge for anything regarding her trache and her secretions are a good sign so that her trachea will not be dry. He insisted that her resp. failure is not due to weaken resp. muscles but choking from her phlegm.

I can only say I came out of the office feeling less assured. The neuro seemed to be so positive about my mum's condition. I wondered if he truly understand what is happening.

Has anyone met a neuro, who is so positive that he appeared unconcerned? I wonder how I should deal with him during the next appt.
 

katekath

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Oh yes I forgot. The neuro told me there is no need to put my mum back on bipap since she is sleeping well and only wakes up when she needs to use the bathroom, not due to discomfort.

My question is what symptoms must I then watch out for during home care to ensure that she gets the bipap when she needs it?
 

joelc

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If your mom wakes up often and wakes up with a headache then it will be time. Headaches are caused by too much CO2 remaining in her system caused by not being able to breathe deep enough.
 

CindyM

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Look also for periods of short, shallow breathing. This is a sign the body is trying to correct her CO2 levels. For me, it happens most often at night while I am lying down, as the force of gravity takes a toll on my chest muscles.

And she might feel light-headed or dizzy from time to time. Also she might feel like a small child is sitting on her chest. I often feel nausea, a sensation I hate!

Any of these indicators is a sign that she might want to use the Pi-Pap at night. My Doc told me if I feel any of these indicators during the day, go ahead and to use the Bi-Pap for an hour or so while sitting or resting quietly.

I am not even a PAL and have a hugely improved quality of life since I started using the bi-pap every night and sometimes during the day. It is a non-invasive and non-medicinal way to correct troubled breathing, so for the life of me I cannot understand why docs don't recommend it more often!
 

katekath

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Thanks for the reply.

Another thing, I realised that after suction, my mum's secretions comes back rather quickly - usually abt 30 mins after suction. Is that normal?

Will it harm to keep switching the inner cannula of her trach too? E.g. Put in the talking inner cannula most of the days and only switch to the regular one for suctioning.
 

joelc

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Everyone is so different when it comes to suctioning it is hard to answer your question. It does not affect me that way. And it will not hurt anything to keep changing the inner canula, but why not leave it out when suctioning? To suction it is okay to not have the inner canula in.
 

katekath

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Oh okay. I didn't know I can do without it during suctioning. The nurses in the first hospital told me I will hurt my mum's trachea if I do suctioning without the inner cannula.
 

katekath

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Update

My mum saw her ENT specialist yesterday. Her usual doc wasn't around and another doctor attended to her.

He was rather insistent on not changing the trach (wanted to do a scope that's why), but caved in after I said "okay, just make sure you don't have to burn her skin if you change it next month". LOL. He said usually patients with Shiley trach don't have to change it every month but get it done every 2 months. There were no granulation observed, so he will only see her 2 months later in April for the next change.

He suspected my mum's neck muscles has weaken as he observed that she needed more effort to speak compared to a regular patient with a trach and her speech wasn't so clear. :( So far he is the only doc (besides the neuro), who knows what ALS is and understand its consequences. Thank God for that! It was easier to ask and obtain answers from him than the neuro surprisingly.

Anyway due to ongoing construction at my place, I asked about trach filters to keep dust out, but he said he doesn't know of any. Does anyone know of any?
 

katekath

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In case anyone is interested in trach cover info...

I now use a tie-on mask to cover my mum's trach. Works fine in terms of blocking dust/smoke, but she's rather uncomfortable from the mask top end rubbing against her chin as she breathes.

So I had been thinking about a fabric neck scarf. Was thinking abt silk since it is soft and is likely to cause less irritation to her chin, but read that it will block the trach when my mum breathes in, so am looking at a cotton one and will update again.

Took her inner cannula to wash yesterday night after nebu and suction, forgot my mask and this pungent smell hit me so bad I immediately backed away. Never smelled it at the hospital, but mum told me it has been there. Ask my ex-RN friend and she said MRSA (she has localized colonization at her stoma) has a distinct pungent smell, so it might just be that.

Spotting of blood found in her inner cannula this morning. Secretions are still whitish, but thick ever since she comes home. No fever. Hopefully she will be fine after a few days.
 

joelc

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Good to hear from you! I have been thinking of you the last few days.
Are you saying she is off the vent for periods of time and you are looking for a filter when she is breathing on her own? If this is the case, from what I know of your situation, I would recommend leaving an HME (humidity moisture exchanger) connected to her tube.
If this sounds like it might work and you are not familiar with them please let me know and I will explain better.
Take care!
 
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