如果有一種方法
可以讓我們的孩子不用再痛苦抽痰
我想我們這些作家長的無論如何都願意嘗試
從國外病友討論區得知了CoughAssist之後
我們這些長期需要呼吸治療的孩子們
似乎出現了新的希望
以下是討論區相關內容的摘要翻譯:(我不是專業,翻譯僅供參考,有誤解歡迎告知)
1.Minimum age to use: i think opinion varies from doctor to doctor but our Sam has been using it daily (4-12x a day) since he was 3 months. he never had an issue with it and it has definitely saved his life on more than one occasion.
(最低使用年齡: 我想不同的醫生有不同的見解,但我們家山姆從三個月大開始每天使用,一天用個4到12次,使用上從來有什麼問題.這個機器肯定已經救了山姆很多次)
2.Adam started using the Cough Assist machine as young as age 2. He uses it daily for maximal insufflation/exsufflation of his lungs. It's like chest ROM to maintain flexibitly in the chest. It works by pushing air into a mouthpiece, face mask or trach adaptor into the lungs. It then sucks air out of the lungs. Simone hit the nail on the head that it is for people who have a weak cough. It works great to clear the lobes of the lungs that are missed during most suctioning.
(亞當從兩歲開始用咳嗽機,他每天使用來幫助肺得到最大的灌氣與抽氣.這就像是透過復健時肺部的擴張與回縮來維護胸腔彈性,它首先將空氣透過吹口/面罩/氣切接口推進肺部,然後再將空氣吸出來.席夢說得對,這是針對無力咳嗽的人所設計的.對於大部分抽痰無法處理的肺部深處,他的效果極佳.)
3.it is more effective at clearing mucous secretions in kids with neuromuscular disease than albuterol and chest percussions. The reason for this is that those techniques help with secretions in the very lower branches of the lungs - where our kids don't have problems (their mucociliary elevators are intact). When you get to the 12 or so upper branches is where our kiddos have the trouble - they simply cannot cough the stuff up. Because most invasive suctioning only suctions one lobe of the lungs, the cough assist is GREAT to use with kids who are trached so that you can get complete airway clearance.
(對於神經肌肉病童的痰液等分泌物清潔問題,這機器比起氣管擴張劑還有拍痰還要來得有效.原因是傳統的拍痰技巧主要是對於較深的氣管分支,但我們的孩子的黏液纖毛運動是正常的,問題不在那邊,在肺部呼吸道第12層之上更淺的分支才是他們的問題所在,因為他們無法把那邊的痰咳出來.大部分侵入式的抽痰只能抽一邊的肺,而咳嗽機對於幫助氣切的孩子保持呼吸道清潔,有非常好的效果.)
*關於是否真的深層氣管完全沒問題，呂立醫師持保留態度，他認為有些人在反覆感染或肺部塌陷的情況下，深層氣管還是有影響。
4.For many, many patients using the cough assist machine allows for sufficient airway clearance and is not associated with the RISKS that come when our kids are given oxygen. (Dr. Bach feels that giving oxygen to our kids can be very DANGEROUS and cautions against it heavily - see his explanation at his website at www.doctorbach.com)
(對於許許多多使用咳嗽機來保持呼吸道清潔的病人而言,他們可以不需要面對因為氧氣不當供應所產生的風險.巴哈博士對此有非常強烈的警告,詳情參見www.doctorbach.com)
5.Using the cough assist machine and pulse ox at home we have been able to successfully manage Adam without hospitalization during acute respiratory illness. I have seen him with low sats (in the high 80's) and after a lot of work with the cough assist machine accompanied with a belly/diaphragmatic thrust (to maximize expiratory pressure) he has cleared several mucous plugs safely and effectively at home.
(透過咳嗽機與血氧監測機,我們在急性呼吸疾病時可以自己照顧亞當,而不需要住院.我們曾在他血氧濃度最高只到80時,努力不懈地透過咳嗽機與一種推腹部/橫隔膜的技巧,在家裡安全有效地把許多痰塊清出來.)
6.a common error that most people do with the Cough Assist machine is set the pressure too LOW. The pressure must be set at least at 40 to get effective movement.
(關於咳嗽機使用的常見錯誤,就是把壓力設得太低.壓力至少要設到40才夠)
7.When Adam is VERY sick with sats in the 80's I still will do chest percussions and nebulizers. Research shows that albuterol increases cilliary movement in the lungs and it can help open airways that are irritated by mucous and infection. Dr. Bach really feels that meds and chest PT are not that necessary and that they are a waste of time, unless the child has low sats that can not be brought up by mechanical ventilation alone. The most important thing with the Cough Assist machine is to set the setting high enough to actually create enough pressure to be effective at clearing the lungs. When we first started, we were using 20/20 presure (inspiration/expiration) and it was basically useless. At a follow up appointment a YEAR later Dr. Bach told us to go to 40/40.
(當亞當病得很重,血氧只到80時,我還是會拍痰,還是會用噴霧器.研究顯示氣管擴張劑可以促進纖毛運動,也可以幫助打開被黏液(分泌物、痰)與感染刺激(而收縮)的呼吸道.巴哈醫師認為這些藥跟拍痰都不是必要的,除非孩子血氧實在太低而單靠呼吸器的幫助仍然不足,否則都只是浪費時間..關於咳嗽機,最重要的還是要將壓力設得夠高,才足夠有效清潔肺部.一開始時我們設定吸入/吐出的壓力在20/20,基本上那沒什麼用.一年後與巴哈博士的回診,他要我們調到40/40)
*這一點呂立醫師不是很同意，他還是認為拍痰與吸藥，還是有其重要性與作用。
8.We just got are cough assist machine 2 weeks ago. My son Justin was in the hospital with a mild case of Pneumonia that started with a throat infection. We all were amazed including the Respiratory therapists at the hospital when we saw how much stuff we were able to get out of Justin his first time using it. We had been doing Nebs, CPT and Suctioning but this worked so well, it reduced the amount of suctioning we had to do and he was out of the hospital 2 days earlier than his usual 7 day stays in the past.
(我們兩週前剛拿到咳嗽機,我兒子賈斯汀當時正因喉嚨感染引發的輕度肺炎而住院.當我們在醫院第一次使用咳嗽機時,對於他可以抽出那麼多的東西,我們與呼吸治療師都感到非常驚訝.我們一直都有在用噴霧氣,拍痰,抽痰,但是咳嗽機實在好用.他減少了抽痰的次數,而且以前他通常要住院7天才能出院,這次少了2天)
9.It seems that, based on the postings, a lot of you use the Vest and/or the Cough Assist, and with good results. What I am also gathering from your feedback, is that most of your kids HATE these treatments, and they seem very harsh (even though they get the job done). I also noticed that we are the only ones who have stated that we use the IPV to aggressively to clear mucous/secretions.
(從前面的文章看起來,似乎你們很多都使用Vest(震動背心)跟咳嗽機,而且效果不錯.不過我也看到你們很多人都說,你們的孩子討厭死這些東西了,這些東西好像很暴力(雖然使命必達).我也注意到了只用我們在使用IPV來積極清理痰液)
是否CoughAssist真的那麼有效?
為何台灣代理多年卻無法推廣?
這個月的試驗希望可以帶來一些答案
晴晴今天以15/15的壓力牛刀小試
還真的把一些痰引了出來
不過她真的很不喜歡 (我想她不喜歡任何在臉上的東西)
但比起抽痰 這實在好太多了
我知道有不少家屬很感興趣
因為這可能會改善不少神經肌肉病友的生活品質
所以這個月我會幫晴晴作完整的紀錄
大家可以看看效果如何
有興趣再來一起與廠商談談
另外
因為許多國外病友也很感興趣
繼上次MTM電話會議之後
近期內也打算要辦CoughAssist的電話會議
屆時我會再公佈內容與翻譯
可以讓我們的孩子不用再痛苦抽痰
我想我們這些作家長的無論如何都願意嘗試
從國外病友討論區得知了CoughAssist之後
我們這些長期需要呼吸治療的孩子們
似乎出現了新的希望
以下是討論區相關內容的摘要翻譯:(我不是專業,翻譯僅供參考,有誤解歡迎告知)
1.Minimum age to use: i think opinion varies from doctor to doctor but our Sam has been using it daily (4-12x a day) since he was 3 months. he never had an issue with it and it has definitely saved his life on more than one occasion.
(最低使用年齡: 我想不同的醫生有不同的見解,但我們家山姆從三個月大開始每天使用,一天用個4到12次,使用上從來有什麼問題.這個機器肯定已經救了山姆很多次)
2.Adam started using the Cough Assist machine as young as age 2. He uses it daily for maximal insufflation/exsufflation of his lungs. It's like chest ROM to maintain flexibitly in the chest. It works by pushing air into a mouthpiece, face mask or trach adaptor into the lungs. It then sucks air out of the lungs. Simone hit the nail on the head that it is for people who have a weak cough. It works great to clear the lobes of the lungs that are missed during most suctioning.
(亞當從兩歲開始用咳嗽機,他每天使用來幫助肺得到最大的灌氣與抽氣.這就像是透過復健時肺部的擴張與回縮來維護胸腔彈性,它首先將空氣透過吹口/面罩/氣切接口推進肺部,然後再將空氣吸出來.席夢說得對,這是針對無力咳嗽的人所設計的.對於大部分抽痰無法處理的肺部深處,他的效果極佳.)
3.it is more effective at clearing mucous secretions in kids with neuromuscular disease than albuterol and chest percussions. The reason for this is that those techniques help with secretions in the very lower branches of the lungs - where our kids don't have problems (their mucociliary elevators are intact). When you get to the 12 or so upper branches is where our kiddos have the trouble - they simply cannot cough the stuff up. Because most invasive suctioning only suctions one lobe of the lungs, the cough assist is GREAT to use with kids who are trached so that you can get complete airway clearance.
(對於神經肌肉病童的痰液等分泌物清潔問題,這機器比起氣管擴張劑還有拍痰還要來得有效.原因是傳統的拍痰技巧主要是對於較深的氣管分支,但我們的孩子的黏液纖毛運動是正常的,問題不在那邊,在肺部呼吸道第12層之上更淺的分支才是他們的問題所在,因為他們無法把那邊的痰咳出來.大部分侵入式的抽痰只能抽一邊的肺,而咳嗽機對於幫助氣切的孩子保持呼吸道清潔,有非常好的效果.)
*關於是否真的深層氣管完全沒問題，呂立醫師持保留態度，他認為有些人在反覆感染或肺部塌陷的情況下，深層氣管還是有影響。
4.For many, many patients using the cough assist machine allows for sufficient airway clearance and is not associated with the RISKS that come when our kids are given oxygen. (Dr. Bach feels that giving oxygen to our kids can be very DANGEROUS and cautions against it heavily - see his explanation at his website at www.doctorbach.com)
(對於許許多多使用咳嗽機來保持呼吸道清潔的病人而言,他們可以不需要面對因為氧氣不當供應所產生的風險.巴哈博士對此有非常強烈的警告,詳情參見www.doctorbach.com)
5.Using the cough assist machine and pulse ox at home we have been able to successfully manage Adam without hospitalization during acute respiratory illness. I have seen him with low sats (in the high 80's) and after a lot of work with the cough assist machine accompanied with a belly/diaphragmatic thrust (to maximize expiratory pressure) he has cleared several mucous plugs safely and effectively at home.
(透過咳嗽機與血氧監測機,我們在急性呼吸疾病時可以自己照顧亞當,而不需要住院.我們曾在他血氧濃度最高只到80時,努力不懈地透過咳嗽機與一種推腹部/橫隔膜的技巧,在家裡安全有效地把許多痰塊清出來.)
6.a common error that most people do with the Cough Assist machine is set the pressure too LOW. The pressure must be set at least at 40 to get effective movement.
(關於咳嗽機使用的常見錯誤,就是把壓力設得太低.壓力至少要設到40才夠)
7.When Adam is VERY sick with sats in the 80's I still will do chest percussions and nebulizers. Research shows that albuterol increases cilliary movement in the lungs and it can help open airways that are irritated by mucous and infection. Dr. Bach really feels that meds and chest PT are not that necessary and that they are a waste of time, unless the child has low sats that can not be brought up by mechanical ventilation alone. The most important thing with the Cough Assist machine is to set the setting high enough to actually create enough pressure to be effective at clearing the lungs. When we first started, we were using 20/20 presure (inspiration/expiration) and it was basically useless. At a follow up appointment a YEAR later Dr. Bach told us to go to 40/40.
(當亞當病得很重,血氧只到80時,我還是會拍痰,還是會用噴霧器.研究顯示氣管擴張劑可以促進纖毛運動,也可以幫助打開被黏液(分泌物、痰)與感染刺激(而收縮)的呼吸道.巴哈醫師認為這些藥跟拍痰都不是必要的,除非孩子血氧實在太低而單靠呼吸器的幫助仍然不足,否則都只是浪費時間..關於咳嗽機,最重要的還是要將壓力設得夠高,才足夠有效清潔肺部.一開始時我們設定吸入/吐出的壓力在20/20,基本上那沒什麼用.一年後與巴哈博士的回診,他要我們調到40/40)
*這一點呂立醫師不是很同意，他還是認為拍痰與吸藥，還是有其重要性與作用。
8.We just got are cough assist machine 2 weeks ago. My son Justin was in the hospital with a mild case of Pneumonia that started with a throat infection. We all were amazed including the Respiratory therapists at the hospital when we saw how much stuff we were able to get out of Justin his first time using it. We had been doing Nebs, CPT and Suctioning but this worked so well, it reduced the amount of suctioning we had to do and he was out of the hospital 2 days earlier than his usual 7 day stays in the past.
(我們兩週前剛拿到咳嗽機,我兒子賈斯汀當時正因喉嚨感染引發的輕度肺炎而住院.當我們在醫院第一次使用咳嗽機時,對於他可以抽出那麼多的東西,我們與呼吸治療師都感到非常驚訝.我們一直都有在用噴霧氣,拍痰,抽痰,但是咳嗽機實在好用.他減少了抽痰的次數,而且以前他通常要住院7天才能出院,這次少了2天)
9.It seems that, based on the postings, a lot of you use the Vest and/or the Cough Assist, and with good results. What I am also gathering from your feedback, is that most of your kids HATE these treatments, and they seem very harsh (even though they get the job done). I also noticed that we are the only ones who have stated that we use the IPV to aggressively to clear mucous/secretions.
(從前面的文章看起來,似乎你們很多都使用Vest(震動背心)跟咳嗽機,而且效果不錯.不過我也看到你們很多人都說,你們的孩子討厭死這些東西了,這些東西好像很暴力(雖然使命必達).我也注意到了只用我們在使用IPV來積極清理痰液)
是否CoughAssist真的那麼有效?
為何台灣代理多年卻無法推廣?
這個月的試驗希望可以帶來一些答案
晴晴今天以15/15的壓力牛刀小試
還真的把一些痰引了出來
不過她真的很不喜歡 (我想她不喜歡任何在臉上的東西)
但比起抽痰 這實在好太多了
我知道有不少家屬很感興趣
因為這可能會改善不少神經肌肉病友的生活品質
所以這個月我會幫晴晴作完整的紀錄
大家可以看看效果如何
有興趣再來一起與廠商談談
另外
因為許多國外病友也很感興趣
繼上次MTM電話會議之後
近期內也打算要辦CoughAssist的電話會議
屆時我會再公佈內容與翻譯
