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Old 10-06-2008, 12:30 PM
hailey_faith hailey_faith is offline
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Default trach evaluation for removal/also need advice

hi i am new to this board i have a question about a trach removal evaluation for my grandmother .first of all there wasnt anything wrong with her prior to this until she got real sick throwing up and bloody stool.she was taken to the hospital and admitted. the physician thought she had a stomach virus.and they ran a bunch of test but couldnt find anything she laid in the hospital bed for 2 weeks without anything being done for her until these test were ran in the 3rd week.by the first of the fourth week she had developed a bad blood clot in her leg.they was treating her for that she started swelling up like a balloon they said it was conjestive heart failure and started giving her lasix for that .by saturday she didnt even look like my grandmother she was so badly swollen she said she couldnt hardly breath sunday the family was called in by the hospital. the doctor wanted to talk to us about her situation.we all went over there and she was almost unrecognisible she was so swollen her mouth was drawed her voice sounded like she was drunk.the nurse said the doctor had slipped out right before we came.so she would tell us the situation she said fluid was backing up into her lungs and she was dying they gave her lots of morphine to make her confortable.we asked can they do some type of surgery to find out whats going on .she said she asked the doctor the same thing and he had said that wasnt an option.she was to far gone and wouldnt make it off the operating table.we all said our goodbys to our grandmother before we left that sunday night .thinking she wouldnt make it throught the night.the doctor was off the next day(thank goodness) so another doctor came in examined her called a family member and said we have 2 options make her confortable or we can do an explorertory surgery to find out whats going on .if we dont do anything she will definately be dead in a day or two.but her chances was about 10% makeing it throught the surgery.we thought a 10% chance was better than no chance .so we said go ahead.come to find out she had a hole in her colon that was causeing everything to back up inside her.she made it through the surgery but she wouldnt wake up .(be alert to get weaned from the vent)they took all of her pain medication away thinking this was what was makeing her that way.all she would do was make painful facial expressions when you touched any part of her body.they run some more test and come to find out they said she had suffered a stroke.thats the reason she isnt wakeing up .they tried every morning to take the vent off her but couldnt get her to respond enough.this went on for about a week or two.then they said once again we can make her confortable and just turn the vent off or we can put a trach in and she can breath like this.and if she can get off the vent the trach can be removed in the future.so we went with the trach because she had fought so hard to live.(she went through alot)they put the trach in and in 2 days took her out of icu and put her back on the 5th floor.where she had gotten a urinary track infection.within 3 days after being put back up there.the nurses was letting the fluid run back up into the cathter.she still was swollen probably more than ever. weeping edema this went on like this for 2 or 3 more weeks.non responsive couldnt get off the vent they had her up to 30 minutes breathing on her own that was it.she was referred to another hospital select specialities they specialize in vent weaning.within 2 days after she got there she was a different woman.fluid started leaving swelling was going down.and she was getting more responsive .i asked what they was doing different because for the last couple of months my grandmother was doing anything.she had 30 days over there to be weaned .thats how long they allowed her .they said they had a 90% sucess rate.anyhow she was completely off the life support in 25 days breathing on her own with oxygen.the next test was a swollow berium test she failed her first time.(aspirated)a lady was suppose to work with her.but the nursing home called with an opening about 2 miles from my grandmothers home.she said they had people that works with trach patients.so she was transferred up there.to start physical theropy.and work with her on her trach.the woman was a speech therapist.she has my grandmother up to eating regular foods and drinking anything she wants just like anyone else .she was working with her on the passy muir but she couldnt tolerate it much.she said she was smothering take it out .so she would but she had her up to an hour and a half .then she got an infection with the trach.they gave her antibotics to clear it up.but for the last month she cannot tolerate it period.about 10-25 seconds and says take it out im smothering.i ask whats the problem she said she can breath in but not out.i talked to the speech therapist about whats causeing this she said she dont know well finally about 3 weeks of raiseing cane the doctor finally sent her out to have the trach looked at .(via ambulance)i didnt get to go with her that day. that evening i went to the nurseing home asked the nurses what they had done to her at the hospital.they said all she came back with was papers saying for them to make an appointment for evaluation for trach removal.they did oct 17 2008 i called back up there the next day and asked the speech therapist what they had done at the hospiatal.blockage changed trachs e.t.c or what. she said she didnt know .nothing as far as she could tell.just for the nursing home make an appointment to have her lungs looked at . i ask her did you try the passy muir she said no and she wasnt going to either.she said something was wrong with the trach and the lung doctor could look at it on her appointment day.this woman has stopped working with her.my question is shouldnt she be working with her more than ever with the passy muir getting her throat mussles buit up before the appointment.so she wont fail the test.because if she fails she will live like this with the trach for the rest of her life.or does anyone know what they do or look for in the evaluation im just asking because i dont have a clue what to expect .or get on to the nurseing home to get them to work with her more aggressively until the evaluation.i know this is a long thread im sorry for takeing up anybodys time but im lost dont know what to do.and my grandmother has fought so hard and come so far the last 6 or 7 months thank you hailey_faith
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  #2  
Old 10-07-2008, 12:02 PM
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JWorthington JWorthington is offline
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Hello and welcome. I am sorry your grandmother has suffered so much Firstly, the passy muir valve allows air into the trach, but not out again. the object is to force the air up and over the vocal cords to enable speech. some people cannot tolerate a pmv. It took my son an awfully long time to be able to tolerate it, now he wears it all day. She should have had an evaluation for the pmv as I said, some people cannot tolerate them, especially if there is any blockage or swelling in the upper airway. someone once described it to me as feeling like one of those cartoon characters whose head swells up and explodes. Some people can learn to vocalize by just covering the trach with a finger, or putting their chin down over it. If the are going to evaluate your grandmother for trach removal the ent will probably want to do a bronchoscopy first to make sure that the airway is ok for her to breathe without it. all ent doctors work differently, some will just remove the trach and monitor the patient, others cap the trach for 24hours before removal. You will need to discuss this with your grandmother's physician. all the very best to you and your family, I will be happy to help if you have any more questions. Hope your grandmother is soon trach free!

Julie
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Sam Feb 11 2003 Opitz G/BBB syndrome, mickey, nissen, autistic,supraventricular tachycardia, bronchiolitis obliterans. decanned May 30 2009. 2 brothers Jonathan (23) James (14).
I am first and foremost a child
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Old 10-08-2008, 11:49 PM
hailey_faith hailey_faith is offline
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Thumbs up trach evaluation

hi thanks so much for the info it has helped me alot on the evaluation test oct 17 .i have another question you might be able to help me with.as was part of the post you posted i was wondering about capping you said the ents do it in different ways .some capping for 24 hrs. if she cant tollerate the passi-muir wouldnt it be about the same thing as capping .or is it different i know air flows through the passy-muir and out the mouth.but if she was capped wouldnt that be harder to breath.like i said im just learning about it .all the info would really be helpful and i want to thank you for reading this post and helping me out. hailey_faith
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Old 10-10-2008, 09:23 PM
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KJKK8437 KJKK8437 is offline
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Some people can't tolerate capping, but others cannot tolerate the PMV. The PMV requires you to breathe in through one airway and out through another airway. I've never experienced it myself, but I know from watching my son that it takes some adjustment to breathe that way - it takes some concentration on his part to get used to it.

I hope this helps.
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Alex born 6/19/2007, PRS, Trached and GTube at 3 weeks, palate repaired 12/20/2007, failed decannulation 5/7/08 due to undiagnosed suprastomal collapse, jaw distraction 9/9/08 (insertion) to 10/30/08 (removal). Single Stage LTP 2/17/09 and now member of the Naked Neck Club. Need a laugh? Check out http://itsallgoodtoday.blogspot.com/

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  #5  
Old 10-11-2008, 12:47 PM
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JWorthington JWorthington is offline
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As Karin said, capping is different to the pmv. The cap closes the trach entirely so the patient breathes in and out through nose and mouth, as normal, whereas the pmv only allows breathing out through the nose and mouth. Having never tried capping I'm not sure how it would work. hope you can talk to your grandmother's ent, but keep asking us any questions and we will try our best to help. But remember, most of us here are not professionals and any advice you receive on here should not replace any medical advice you are given (though we do live this day in, day out and know our children better than the professionals do!). Hope she is ok

Julie x
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Sam Feb 11 2003 Opitz G/BBB syndrome, mickey, nissen, autistic,supraventricular tachycardia, bronchiolitis obliterans. decanned May 30 2009. 2 brothers Jonathan (23) James (14).
I am first and foremost a child
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  #6  
Old 10-16-2008, 11:00 AM
Christamae Christamae is offline
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I would have the doctor do an upper airway bronchoscopy. It is possible that she has scar tissue, nodules, or something else partially blocking her airway making it hard to exhale...I hope things get better for your persevering Grandma!
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Old 10-20-2008, 02:29 PM
hailey_faith hailey_faith is offline
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she had a appointment last week but was rescheduled today 10-20-08 the doctor has scheduled for a bronchoscopy 11-3-08 so i guess well just take it from there.but in instances where everything looks alright do they take it out then or do they wait then do the capping trials pmv e.t.c
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  #8  
Old 10-22-2008, 08:56 AM
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JWorthington JWorthington is offline
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You will have to ask the doctor which way he decannulates. I know many of our kids have to tolerate capping for 24 hours before the trach is removed, but also some doctors just take the trach out in the or. I am sure they will evaluate to see which is the best method for your grandmother.

Good luck
Julie
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Sam Feb 11 2003 Opitz G/BBB syndrome, mickey, nissen, autistic,supraventricular tachycardia, bronchiolitis obliterans. decanned May 30 2009. 2 brothers Jonathan (23) James (14).
I am first and foremost a child
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  #9  
Old 11-03-2008, 07:28 PM
hailey_faith hailey_faith is offline
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Thumbs up 11-3-08 update

hello everyone just to let everybody know we went for the bronchoscopy and when the doctor came out he she said everything went well so they went ahead and took it out on the spot.so far she is breathing on her own wonderfully.just as before she got sick.so we are takeing it one day at a time i just wanted to thank everyone that has given me a better idea about trachs.and for the replies .once again thanks hailey_faith
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Old 11-04-2008, 07:20 AM
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KJKK8437 KJKK8437 is offline
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I am so happy for you and your grandmother. Please keep us posted.
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Alex born 6/19/2007, PRS, Trached and GTube at 3 weeks, palate repaired 12/20/2007, failed decannulation 5/7/08 due to undiagnosed suprastomal collapse, jaw distraction 9/9/08 (insertion) to 10/30/08 (removal). Single Stage LTP 2/17/09 and now member of the Naked Neck Club. Need a laugh? Check out http://itsallgoodtoday.blogspot.com/

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