Old 12-25-2008, 10:07 PM #31 (permalink)
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Thank you for the info Carolan.

Just an update on my mum. Her neurologist doesn't want to see her till she sees the ENT specialist. The doc at the hospital told me they want to change the trach to smaller size.

I had been telling every doc I meet that O2 is not the issue and CO2 is the impt issue we should look at, but no one seemed to understand what I am talking about and I am getting very frustrated, up to the point of giving up. Even the physiotherapist working with my mum doesn't seemed to understand what ALS is. I have had people telling my mum she is going to recover and go back to her regular life. Argh. Sorry, I am feeling terrible about the medical system in SG now.

She now has MRSA infection at her stoma and I'm terribly worried. Please keep her in your prayers. My abusive father went crazy on her at the hospital. He is uncontrollable and it is highly frustrating trying to get him to calm down, while I am trying very hard not to argue with him.

It had been a chaotic Christmas and I hope things will get better.
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Old 12-26-2008, 09:41 AM #32 (permalink)
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I hope things get better too, KateKath. This is a rough way to start the New Year but keep advocating for your Mom. Don't let them get away with anything! Cindy
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Old 12-27-2008, 12:03 PM #33 (permalink)
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I just wanted to let you know that I am praying for you and your mom. You have been through quite an ordeal. I will keep you both in my prayers.
In friendship
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Old 12-29-2008, 08:49 PM #34 (permalink)
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Thank you Cindy and Jeannie.

It's so difficult to keep going for her, but I know I have to. I realised my mum is forgetting many things easily these days. For instance, I had spoken to her about how my father had forbid my aunts (her sisters) to visit her and threaten to harm them if they do. Then the next day, she asked why her sisters are not here. I got confused and repeated what I mentioned before. But the same situation is repeating. I hope I can get a doc to speak to regarding this.

I managed to speak to a senior staff nurse yesterday and she told me my mum has MRSA colonization and not infection. Therefore she is not on antibiotics and they are taking swaps for 3 weeks for testing before deciding what to do.

Her appt with the ENT specialist had also been brought forward to 7th Jan from 22nd Jan. I don't know how the MRSA colonization will affect the changing of trach, but I'm going to ask.

Does anyone has any experience with MRSA colonization/infection?
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Old 01-05-2009, 04:00 PM #35 (permalink)
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MRSA colonization is typical from what I understand. Mom has it, so every time she gets a culture, it comes back positive for MRSA. It doesn't usually go away, so it will probably always be there. Just try to use as sterile of a technique as possible when changing the trach dressing, and get onto the nurses/respiratory therapists if they are careless with the dressing changes. And be sure to wash your own hands after coming into contact with the sputum, if that ever happens. The main thing is that you don't want the MRSA to get into her lungs or bronchial tubes, or anywhere else "internal" (including any possible open wounds elsewhere on her body).

One doctor suggested that we add cinnamon and turmeric to Mom's puréed food in order to get rid of the MRSA. She still tests positive for MRSA, but I think she has had fewer infections. Usually we are dealing with the pseudomonas, though, and her pulmonologist says that will probably always be colonized as well. Mainly we judge by smell, as your topic title indicates.

I hope things get better for you, but just remember that you are not alone. We're all going through this stuff together, all in our own special ways...
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Old 01-05-2009, 10:41 PM #36 (permalink)
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Thanks for the tip on cinnamon and turmeric! I will go look for them at the supermarket after work. Hopefully my mum will be receptive to that. I did read that decolonization is not effective. I'm just worried that changing her trach must affect her lungs with MRSA colonization at the stoma. My friend who used to be a RN, had told me about MRSA when she detected the smell from my mum's trach. It is only now at another hospital did a culture got done and tested positive for it.

Her physio told her it is good to get some sun (nurses and docs don't let her go anywhere else except the toilet and ward) recently and my father took it as the "cure" for MRSA and made her stand in the sun for 15 minutes with her legs all wobbly! I nearly went crazy when I reached the hospital. He doesn't want to help her when she stands or sits because of MRSA. My sister is there when she can, but I worry when school starts for her.

Hopefully I can convince my father to pick a domestic helper. He has rejected 20 so far and we are running out of agencies to get recommendations. *crosses fingers*

Last edited by katekath : 01-05-2009 at 10:46 PM Reason: added more text
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Old 01-06-2009, 09:39 AM #37 (permalink)
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This cannot be easy for you and your family, Kate. We all know a PAL has a hard time of it but the family is suffering, too. My thoughts are with you today! Cindy
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Old 01-07-2009, 08:10 PM #38 (permalink)
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Default Change of Trach

So my mum's appt was brought forward to 7 Jan and she got to see the ENT specialist yest. When I saw her after the change of trach, I was so heartbroken.

They had to literally burn off some skin/flesh because the tissues had stuck on her trach. She was in pain during the changing of trach, but was feeling fine after the change. In fact, there wasn't as much phlegm as there was initially after the change (Yay!) and I am praying hard it will stay that way or decrease even more. Now they told me the trach has to be changed monthly. I hope it will be painless for my mum during the next appt. She has enough to deal with already.

Then bad news hit us when an agency told us the helper we had chosen a day before refused to work for us. Sigh. I can understand. No one wants to care for my mum because of her trach. My sister and I had a talk and agreed that if no one can be hired, then she will have to care for mum, while I worked. Yet, she still has at least 6 more months of school before she graduates and I really don't want her to give up her studies.

My father went crazy at the hospital again and told my mum to kill herself, threw things around and left. It's amazing how he refused to stop all these even after seeing how my mum is now. Sorry for ranting. I need to get it out of my system. :P
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Old 01-07-2009, 08:39 PM #39 (permalink)
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You feel free to rant anytime you want! You have good reasons to be upset! My heart goes out to you and so do my prayers. This has been a difficult journey for you.

My wife changes my tube and I don't feel a thing. We now are changing it once or twice a week because secretions have been bad and I do a lot of coughing. We then sterilize and reuse. We do change the inner canula twice per day, it only takes 5 seconds and again this causes no discomfort.

Changing the tube should not be more than 5 weeks, and that is only if everything is going fine. I don't understand how skin could attach to it the way you describe?
When secretions are to high to suction we remove the tube and suction, then thing are great! Remember that I have a cuffless tube and can still talk. With a cuffed tube it a bit different but not much.
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Old 01-08-2009, 10:04 PM #40 (permalink)
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The trach was in there was too long. That was why we had to bring the appt with the ENT forward. I thank God this was possible, if not it could have been worse. My mum is a subsidized patient, so there is always a long wait to see doctors. The hospital don't care how urgent your case is and we have to push for what my mum needs every single time. Many times they have to wait till something happens before they are willing to listen to us. They are rather insistent on us not changing my mum's trach ourselves, but I'm going to ask again during the next appt with the ENT.

Another thing was my mum has a lot of secretions and was coughing a lot too. There was this week when she need suctioning up to 12 times a day. We have no idea why and the doc wasn't able to tell us more, but they couldn't find any signs of infections (no fever, X-ray came back normal etc.). We even have times when secretions came right out of her trach as she coughs.

My mum has a cuffless trach too. In the first hospital, her speaking inner cannula is changed to the regular one when she needs suctioning and then replaced back after it is cleaned and suction is done. In this second hospital, they only changed to the speaking inner cannula when she sleeps and keeps the regular in there during her waking times.

Do you have a trach with disposable inner cannula, Joel? Or do you mean washing the inner cannula for reuse when you mentioned changing the inner canula twice per day?

How do you sterilize your trach tube for reuse btw?

My mum will be discharged on 11 Feb (provided no changes occur and we can get a domestic helper). I know my sister and I (including the helper if there is one) will be trained two weeks before her discharge.

Besides questions relating to trach care and stoma cleaning/dressing, what other questions should I ask? In case I miss anything.

She will see her neuro on 19th Jan. Hopefully I can get some answers regarding the CO2 issue. Her weakness has progressed from her right to left hand and she is rather unstable in standing, though walking seems fine while someone holds her. She can still feed herself, but I see her hands shaking more recently.

My sister told me the nurse and neuro was rushing both my mum and her to leave when he was done with his observations during the last appt, so I am going to write down all the questions on paper and make sure he answers them.

Okay, this is such a long post. Yes, I can get really longwinded.
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Old 01-08-2009, 11:07 PM #41 (permalink)
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Your mom is going to be so much better off at home and so are you when that happens.

Don't be afraid of her being home, it will be so relaxing after what you have been through!

There is no rhyme or reason to the amount of secretions I have day to day. Some days, like 3 days ago, I had to be suctioned about 20 times and today it was once, so don't be concerned about it as every day is different.

Cleaning goes like this: we replace the inner canula and put the dirty one in a shallow dish with hydrogen peroxide and let it soak for 15 minutes, then we clean it using the small brush that comes with the tubes, then it gets rinsed under the tap with ordinary water. We then store it in a plastic container until we need to use it. We have about 8 inner canulas that we keep recycling. There are 2 with every new trache tube.
We also are starting to do the same with the trache tube itself since we are changing it so often due to secretions.

Don't hesitate to ask questions, we are all willing and ready to help where we can.

God Bless!
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Old 01-11-2009, 05:41 PM #42 (permalink)
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Just to clarify, Joel, do you mean the vent circuit tubing that connects to the trach? My understanding is that the part of the trach that is inside the trachea should not be changed that often. The inner cannula should be changed every day or two (obviously more if necessary), but not the actual trach device. By the way, what medications are you taking for secretion management? My mother takes Robinul and also has a Scopolamine transderm patch. Her doctor added the Robinul when we were having problems with excessive secretions. Since then, it's rarely a problem for her. Also, excessive suctioning can stimulate secretions. It's a fine balance for us--I know that sometimes we suction a little more than we are supposed to, but I try to use my best judgment (for whatever it's worth) to prevent mucus plugs without causing additional secretions.

Katekath, your saga never ceases to amaze me. You are such a good person!
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Old 01-11-2009, 07:48 PM #43 (permalink)
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I don't take any medication at all. I was talking about the actual trache tube and we have not had to change it yet this week, but we were changing it several times a week when my secretions were bad. We change the inner canula once or twice a day. Yeterday I went 24 hours without needing to be suctioned and today I have been suctioned once. I am convinced the excess secretions I was having were a result of the cold I had and am finally over. My usual is 2 or 3 suctionings a day and changing the trache tube every 3 to 4 weeks. I am using a new type of tube that is silicone based and takes on the shape of your trachea with body heat. I found it has to be changed more often than every 5 weeks. I have not found that more frequent suctioning causes additional secretions.
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Old 01-11-2009, 09:41 PM #44 (permalink)
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Default File a formal complaint with the State in which you live!

Hi Katekath,

The care of your Mother is not quality care, as you well know, and is unacceptable in any hospital facility- acute or long term care. There are regulations which address the quality of care issues you are incurring and require hospitals to follow certain rules and regulations. They are not being met as suggested by your Mother's poor, uncceptable care.

All facilities are required to post both the phone numbers of the Ombudsman and the State licensing agency in a prominent location). Call them with any concerns you have. Please look for those numbers and call them and file a complaint and the complaint will be investigated with outcome as appropriate to the findings, sometimes a citation with a monetary fee attached.

The best to you and yours........

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Old 01-11-2009, 11:11 PM #45 (permalink)
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She is from Singapore so I don't think that applies.
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