PDA

View Full Version : Ainsley's Crying Problem - Any ideas?


Ainsley's Mom
04-28-2009, 08:27 PM
I hope this doesn't get confusing but I'm going to post this as a separate topic even though the question was raised in the other thread I posted today. I've actually asked about this on the forum several times trying to figure out what is happening to Ainsley's airway when she cries and if it's typical or not. It's as if she can't get the air out when she cries. Recently the nurse practitioner at our ENT office said she thinks the trachea naturally clamps down during crying and in Ainsley's case she can't get the air out because she has the cannula in her airway. The ENT, when I asked, kind of said yeah this could be normal for PMV or cap use. I'd asked on the forum if other kids are able to cry wearing their PMV and it seems to vary. So I'll ask again, but with video this time so you can really see. Please let me know your thoughts about what you see and what the cause could be. The harder she cries the bigger the problem getting the air out and it happens much quicker with the cap than the PMV. If I hear her start to cry I often have to remove the PMV and always the cap.

http://www.youtube.com/watch?v=J-1tAdMrOHQ She's fussing because she wants to be outside too, then you can hear her start to laugh, and there are a few times when she is quiet and you can hear she is quietly breathing. This is her voice. It is hoarse due to scar tissue and this is about the best it ever sounds.

http://www.youtube.com/watch?v=gaQlx0l38wEIn this video she had been fine wearing the cap but then starts crying because I put the pulse ox on her foot and you can see the crying problem is even worse with the cap and it has to be removed within about 30 seconds. (See the third video on the capping thread if you want to see her doing better with the cap.)

Mom2TwinsPlus1
04-28-2009, 08:49 PM
I don't have any answers, as we don't cap or wear a pmv but I did want to send you hugs:hug: Poor Ainsley, that has to be so hard on her, you can tell she is struggling. Poor Mommy too. I hope you get some answers soon, after seeing the videos I can understand your concern

scm
04-28-2009, 09:02 PM
With both the PMV and the cap, she would have to be able to fully exhale thru her upper airway for it to be comfortable and safe. If her false chords are still swollen, maybe they are obstructing her airway when she is straining to cry? I know from Max using his false chords to phonate that it is the force of air that brings them together - and if hers are swollen to start with they could be completely blocking her from exhaling.

It was a little hard to tell what was happening with the PMV, she didn't look too upset. In the second video I thought she was gasping because of not being able to exhale - but you can hear her continue to inhale. I don't think you would see her sats drop from stacking her breaths like that because she is only able to get air in, but not out.

Does she otherwise tolerate the cap and PMV when she is not upset?

Gretchen(Celia's mom)
04-28-2009, 09:03 PM
Same with Celia,,she can draw the air in but not get it out, Pre-trach this is how it was every time she coded,,All her doctors and I have finally agreed that it has to do with her brains signals to the airway NOT to clamp down.
Your thoughts?

Ainsley's Mom
04-28-2009, 09:51 PM
With both the PMV and the cap, she would have to be able to fully exhale thru her upper airway for it to be comfortable and safe. If her false chords are still swollen, maybe they are obstructing her airway when she is straining to cry? I know from Max using his false chords to phonate that it is the force of air that brings them together - and if hers are swollen to start with they could be completely blocking her from exhaling.

It was a little hard to tell what was happening with the PMV, she didn't look too upset. In the second video I thought she was gasping because of not being able to exhale - but you can hear her continue to inhale. I don't think you would see her sats drop from stacking her breaths like that because she is only able to get air in, but not out.

Does she otherwise tolerate the cap and PMV when she is not upset?

I think that makes a lot of sense, the phonation that goes along with crying is so intense that the cords slam shut and prevent air from being able to get out. I think in a way that's what her Dr. was trying to say (we were in the OR so he was kind of rushed) and it makes a lot more sense than the nurse's theory about the trachea collapsing onto the cannula. That really helps. And in fact I've always suspected that crying was actually contributing to the swelling and now I think that makes even more sense. I think I'll make sure not to let her cry even for a second when she is wearing the PMV or cap. Although I suppose it could still be rubbing together and irritating the swollen cords when she cries, but it's just not visible because the air comes out the trach.

Thanks!

Ainsley's Mom
04-28-2009, 10:54 PM
....It was a little hard to tell what was happening with the PMV, she didn't look too upset. In the second video I thought she was gasping because of not being able to exhale - but you can hear her continue to inhale. I don't think you would see her sats drop from stacking her breaths like that because she is only able to get air in, but not out.

Does she otherwise tolerate the cap and PMV when she is not upset?


Sorry, forgot to answer that. Yes with the PMV you're right she's okay, she's just fussing because she's stuck inside. The sounds are not breathing sounds but her fussing voice. Then Adrian makes her laugh and she's cracking up. Again, due to the swelling and scarring, not a great sounding voice (still music to my ears to hear her laugh). In the video where she is really crying hard you are right, she is not getting the air out and is stacking breaths. I think you're right about the sats. So maybe that is also why she sats higher when she isn't doing as well with the cap (on the other thread). So when she appears to being doing fairly well and she's satting at 98% that is actually a little low for her by 1-2%.

scm
04-29-2009, 06:06 AM
got it.
I read your other post, too. I saw that Ainsley's in a 3.5, and if it's any encouragement Max was much much more comfortable with the PMV when he went from a 3.5 to a 3.0. That small downsize made all the difference.

I hope Ainsley is over her cold soon:hug:

LKN
04-29-2009, 02:56 PM
It look like she is stacking her breaths. The pressure probably doesn't feel very good. Nathan never tolerated his PMV for more than an hour or so. He said it made his head feel funny--even with holes drilled.

As for the crying causing swelling, we were just told that is not really probable--at least for Nathan. Crying is good--it forces more air into their lungs. We've also got some swelling issues--Nathan has a reactive airway--in the glottic region at the site of his birth defect.

Post-LTP this time, the area remained swollen, and we asked if crying was causing it to swell or get worse and they said absolutely not. After extbation yesterday, the more he cries, the better the sats because he can cough so much more stuff out of his lungs.

Ainsley's Mom
04-29-2009, 11:04 PM
got it.
I read your other post, too. I saw that Ainsley's in a 3.5, and if it's any encouragement Max was much much more comfortable with the PMV when he went from a 3.5 to a 3.0. That small downsize made all the difference.

I hope Ainsley is over her cold soon:hug:

The ENT said he doesn't think it'll help because her airway is actually plenty big around the trach. But I still think it's worth a shot and hope we'll have better luck with the cap. I don't think it'll help this crying problem which happens with both the PMV and cap, just worse with the cap. She otherwise tolerates the PMV all waking hours, except when she's sick and coughing.

It look like she is stacking her breaths. The pressure probably doesn't feel very good. Nathan never tolerated his PMV for more than an hour or so. He said it made his head feel funny--even with holes drilled.

As for the crying causing swelling, we were just told that is not really probable--at least for Nathan. Crying is good--it forces more air into their lungs. We've also got some swelling issues--Nathan has a reactive airway--in the glottic region at the site of his birth defect.

Post-LTP this time, the area remained swollen, and we asked if crying was causing it to swell or get worse and they said absolutely not. After extbation yesterday, the more he cries, the better the sats because he can cough so much more stuff out of his lungs.

When she is crying she is miserable, no doubt about it. When she really builds up pressure it pops off but I usually take it off right away when she cries. I know what you're saying about the doctors saying that crying's not likely to be the cause. We've heard that too. But I'm out of ideas and think there must be a reason her upper airway is remaining swollen. It got so much better after the fundo that stomach acid was clearly a huge part. I just think that if the vocal cord area is swollen and they slam shut against each other that can't help the swelling.

We've talked about Nathan's conditions in the past, but I'm a little confused about why he had the LTP because I thought the problem was that he is lacking true cords and has swelling of the upper airway like Ainlsey, but that allergy treatment helped? It's interesting to me that they could do an LTP, intubate him and even with swelling he can breath well enough through that swollen upper airway. I guess it just shows that each kid's airway is so totally completely different. :hairpull:

Christamae
04-30-2009, 02:04 PM
I haven't ever tolerated capping or a speaking valve. I still can't talk on the vent because of this. My airway is deviated. In order to get a voice off the vent I have to push the trach up and slightly off to the side. You might try adjusting the angle and see if you get a better voice.

She is stacking while crying. I have done this and it is very uncomfortable and frightening.

My upper airway likes to randomly close off. Any sort off coughing episode will cause it. My airway closes off 80% of the time when I cry.

Ainsley's Mom
04-30-2009, 04:27 PM
I haven't ever tolerated capping or a speaking valve. I still can't talk on the vent because of this. My airway is deviated. In order to get a voice off the vent I have to push the trach up and slightly off to the side. You might try adjusting the angle and see if you get a better voice.

She is stacking while crying. I have done this and it is very uncomfortable and frightening.

My upper airway likes to randomly close off. Any sort off coughing episode will cause it. My airway closes off 80% of the time when I cry.

That is very interesting Christamae. Do you know why your airway closes off esp when you cry? I was under the impression that you are trached due to muscular dystrophy. Am I correct or is there more going on? It sounds as if there could be some similarities in your airways. Although the ENT has never seen her airway close off, the suspected problem has been that it's swollen. Since her fundo the swelling decreased so she's been able to handle the PMV really well.....until she cries. So I'm trying to figure out what is happening. What do you think about Christina's idea that because they are already swollen the force of air through them to phonate is slamming them shut so she is unable to exhale normally?

Ainsley's Mom
05-01-2009, 02:36 PM
Another related question for those who know their anatomy better than I do. Could vocal cord scarring cause this to be happening? The ENT saw limited movement of her cords and a lot of scarring that seemed to be caused by the intubations at birth. He said he's considering a cricoid split surgery. Would this surgery allow the cords to move more freely or is that not the point?

Her previous ENT mentioned removing scar tissue when the swelling reduced. I'm assuming that is not the same thing as a cricoid split, correct? Maybe they'll do both.

If the restriction of vocal cord movement could be hindering her ability to exhale could it also be affecting her ability to inhale somewhat?

All these thoughts have me wondering if all the waiting will get us nowhere. Other than that they couldn't operate before because it was too swollen.

Gosh sometimes I really wish we had a straightforward airway problem. :confused:

Ainsley's Mom
05-01-2009, 02:40 PM
Same with Celia,,she can draw the air in but not get it out, Pre-trach this is how it was every time she coded,,All her doctors and I have finally agreed that it has to do with her brains signals to the airway NOT to clamp down.
Your thoughts?

Personally I don't buy it. The theory is that the brain signals her to inhale fine but not the exhale? Of course I don't know her full medical history but I would suspect an undiagnosed anatomical issue that prevents exhalation.

suzanne2545
05-01-2009, 05:02 PM
Personally I don't buy it. The theory is that the brain signals her to inhale fine but not the exhale? Of course I don't know her full medical history but I would suspect an undiagnosed anatomical issue that prevents exhalation.

You know Parker's "breath holding" well, it always starts with an inhale - an unusual inhale so we know it is coming and then he can't exhale. And then the episode. I'm dying to get into pulm to hear their thoughts. The inhale, for what it is worth is a dragging sound. Almost like a last, dying breath. For lack of a better way to describe it.

KJKK8437
05-01-2009, 05:59 PM
I have no advice, unfortunately. I wish I did. I'll share a little bit of some of the problems we had -- perhaps they trigger a thought or something.

Alex had a very small but very significant suprastomal collapse (I think they said one tracheal ring). It was small enough to use an ear graft instead of a rib graft. One of his ENTs said he had malacia at the time of our first decann, but I don't buy it. There is too much contradictory information and inconsistencies with that part of his record, so I tend to think of the suprastomal issue as the only one. I'm letting you know because I might be wrong.

Alex's LTP surgeon was shocked that with Alex's degree of collapse he was able to wear the PMV at all. Like Ainsley, he could wear it more often then not after the jaw distraction, and he had plenty big enough of a leak. Because of the suprastomal issue, though, they would not permit us to cap at all.

Now, in Alex's case, when we failed the first decann, the RT that performed the removal said that Alex was moving air. What DH and I saw, though, was that Alex moved air OUT, but he couldn't move it IN. (Opposite of Ainsley.) Our best guess, which the doctors didn't argue with, was that the force of the exhale pushed the trachea open, but the negative pressure of the inhale pulled it shut. I don't know if that is the only way it could happen -- I wonder now if there is some function that can make it go the other way and is triggered under stress?

Anyway -- possibly the only piece of useful information in this is that you can have a one-way airway problem. Exhale is okay, but inhale is not. I'm not 100% sure about this, but I seem to recall reading something about this or similar in the report of the American Thoracic Society -- that PMV useis not necessarily a guide to a successful decan because the one-way air flow can disguise some problems. I never thought enough about it to look at what sort of one-way problems there could be.

Wish I could help.

Ainsley's Mom
05-01-2009, 07:37 PM
You know Parker's "breath holding" well, it always starts with an inhale - an unusual inhale so we know it is coming and then he can't exhale. And then the episode. I'm dying to get into pulm to hear their thoughts. The inhale, for what it is worth is a dragging sound. Almost like a last, dying breath. For lack of a better way to describe it.

E-gads Suzanne. That paints a very clear picture in my head. Luckily we don't have that same sound. I can't wait for that pulm appt for you, I'm eager to hear what they say. With Ainsley she might be a little unhappy with the cap but it's as if the act of crying just shuts off the airway.There is little sound. Well you saw the video. Sometimes a little burst of air will force its way through, but for the most part it's just closed.

I have no advice, unfortunately. I wish I did. I'll share a little bit of some of the problems we had -- perhaps they trigger a thought or something.

Alex had a very small but very significant suprastomal collapse (I think they said one tracheal ring). It was small enough to use an ear graft instead of a rib graft. One of his ENTs said he had malacia at the time of our first decann, but I don't buy it. There is too much contradictory information and inconsistencies with that part of his record, so I tend to think of the suprastomal issue as the only one. I'm letting you know because I might be wrong.

Alex's LTP surgeon was shocked that with Alex's degree of collapse he was able to wear the PMV at all. Like Ainsley, he could wear it more often then not after the jaw distraction, and he had plenty big enough of a leak. Because of the suprastomal issue, though, they would not permit us to cap at all.

Now, in Alex's case, when we failed the first decann, the RT that performed the removal said that Alex was moving air. What DH and I saw, though, was that Alex moved air OUT, but he couldn't move it IN. (Opposite of Ainsley.) Our best guess, which the doctors didn't argue with, was that the force of the exhale pushed the trachea open, but the negative pressure of the inhale pulled it shut. I don't know if that is the only way it could happen -- I wonder now if there is some function that can make it go the other way and is triggered under stress?

Anyway -- possibly the only piece of useful information in this is that you can have a one-way airway problem. Exhale is okay, but inhale is not. I'm not 100% sure about this, but I seem to recall reading something about this or similar in the report of the American Thoracic Society -- that PMV useis not necessarily a guide to a successful decan because the one-way air flow can disguise some problems. I never thought enough about it to look at what sort of one-way problems there could be.

Wish I could help.

Yes, I think that is true that it's a bit easier to push the air out than it is to breath it in when there is airway trouble. What is odd in Ainsley's case is that she can breath with the cap on for up to an hour or so (on a good day) but the second she cries it's over. And since the same thing happens with the PMV on you know it's the exhalation that is the problem. I think it's just quicker to cause distress with the cap because she is also having trouble with inhalation as well as the exhalation.

scm
05-01-2009, 08:58 PM
Susan,
I am not an expert on anatomy, but here is what I've learned from the work we have done on Max's airway. P.s. I could be completely off base :rolleyes: I just copied your post and stuck in my answers. hope it's not confusing.


Another related question for those who know their anatomy better than I do. Could vocal cord scarring cause this to be happening?

*yes.....


The ENT saw limited movement of her cords and a lot of scarring that seemed to be caused by the intubations at birth. He said he's considering a cricoid split surgery. Would this surgery allow the cords to move more freely or is that not the point?


*The cricoid split is done below the chords, (i thought)to open up the subglottic area. I don't think it is an all that successful surgery? I have heard of it attempted to avoid the trach, but not as a reconstruction/repair.

Her previous ENT mentioned removing scar tissue when the swelling reduced. I'm assuming that is not the same thing as a cricoid split, correct? Maybe they'll do both.

*Not the same thing.

If the restriction of vocal cord movement could be hindering her ability to exhale could it also be affecting her ability to inhale somewhat?

*Yes, if her chords are paralyzed in a shut position then she would have trouble. but, remember with the PMV, she is breathing in thru the trach and just has to exhale thru her chords.

All these thoughts have me wondering if all the waiting will get us nowhere. Other than that they couldn't operate before because it was too swollen.

*When Ainsley first acquired swelling, it was likely soft tissue swelling. After some time, either the swelling recedes and resolves to a degree, or it can scar down. If either the chords or subglottic area has scarred down, then the swelling becomes fixed which necessitates a repair. Usually this type of swelling/scarring is from trauma from intubating. there are different procedures depending on where the scarring is located, and how large an area it is.

Colin's mom
05-01-2009, 10:10 PM
"The ENT said he doesn't think it'll help because her airway is actually plenty big around the trach. But I still think it's worth a shot and hope we'll have better luck with the cap. I don't think it'll help this crying problem which happens with both the PMV and cap, just worse with the cap. She otherwise tolerates the PMV all waking hours, except when she's sick and coughing."
(sorry, I need to figure out how to copy text)

This post has me thinking. We first attempted to cap Fintan last summer. The video of Ainsley reminds me of how it went. At first he was okay, then he started crying. He was doing the same thing as Ainsley. He was stacking his breaths, like you said. It seemed like he could get the air in, but not out. I could tell it really scared him. He wouldn't let me near him even with a PMV for months after that.

Another of Ainsley's video of her wearing the cap but not crying, yet she kept her sats up. This was our experience a few weeks ago. He was calm, a little bit noisier and had some pulling at the trach site but satting at 99. Fintan's cords are paralyzed in the closed position. He has had a couple cordectomys that gave him an millimeter or two of breathing room when he's calm. However, when he cries his cords slam shut.

Fintan tolerates the PMV fine too when not sick. I can hear his cry with the pmv. It's not a strong cry but then neither was Colin's. Which I attributed to the BVCP. However, if he's crying really hard he'll take it off. When we capped Fintan last summer, I didn't hear much of his cry. Which now when I think about it, makes sense. If he could draw air in but had trouble exhaling AND pushing air past the cords, I wouldn't be able to hear his cry.

You said you can hear her cry a little more wiith the PMV. That makes sense too because she doesn't have trouble exhaling when wearing the PMV. Hmmm, I don't know if this was of much help to you but like I said what you shared about Ainsley got me thinking.

Lesley

Ainsley's Mom
05-01-2009, 11:59 PM
*The cricoid split is done below the chords, (i thought)to open up the subglottic area. I don't think it is an all that successful surgery? I have heard of it attempted to avoid the trach, but not as a reconstruction/repair.

Yeah, that must be why he mentioned it as a possibility but wasn't too excited about the idea.

*Yes, if her chords are paralyzed in a shut position then she would have trouble. but, remember with the PMV, she is breathing in thru the trach and just has to exhale thru her chords.

Well they aren't paralyzed from what they see just there is limited movement because of scar tissue and swelling.

**When Ainsley first acquired swelling, it was likely soft tissue swelling. After some time, either the swelling recedes and resolves to a degree, or it can scar down. If either the chords or subglottic area has scarred down, then the swelling becomes fixed which necessitates a repair. Usually this type of swelling/scarring is from trauma from intubating. there are different procedures depending on where the scarring is located, and how large an area it is.

The swelling becomes fixed, so do you mean that the swelling just won't go away. Or by saying it becomes fixed do you mean it actually becomes scar tissue? This is what the area looks like right now.
http://farm4.static.flickr.com/3571/3492566865_47065ca091.jpg
If that means anything to you. The problem was that it was too swollen to do surgery. She's still kind of borderline. Hopefully the ENT will give me more info about what type of surgical removal he could do at our June appointment.

Fintan's cords are paralyzed in the closed position. He has had a couple cordectomys that gave him an millimeter or two of breathing room when he's calm. However, when he cries his cords slam shut.

Fintan tolerates the PMV fine too when not sick. I can hear his cry with the pmv. It's not a strong cry but then neither was Colin's. Which I attributed to the BVCP. However, if he's crying really hard he'll take it off. When we capped Fintan last summer, I didn't hear much of his cry. Which now when I think about it, makes sense. If he could draw air in but had trouble exhaling AND pushing air past the cords, I wouldn't be able to hear his cry.

You said you can hear her cry a little more wiith the PMV. That makes sense too because she doesn't have trouble exhaling when wearing the PMV. Hmmm, I don't know if this was of much help to you but like I said what you shared about Ainsley got me thinking.

I find talking helps me put it all together in my head. I'm thinking that even though Ainsley doesn't have vocal cord paralysis the residual swelling and rigidity of the cords are making it almost as though she does because there is probably restricted airflow through there and crying just closes down the airway because of the force, which is why she can handle a slight cry but not a full cry. Also explains why you couldn't hear much of a cry and why he would take it off. It helps a lot to understand why. I think that so long as she has the swelling and scar tissue we're going to see a problem when she cries and if it resolves we'll probably notice a change. And a change in her voice. Because her voice sounds hoarse and strained. It's all interconnected.

Christamae
05-02-2009, 02:46 PM
I was trached due to associated muscle weakness. But this was done because I could not extubate. I had repeated prolonged intubations (7 days, 10 days, 14 days) because of back surgeries. After my trach I had 0 upper airway movement. I could not swallow without aspirating for 3 months. I could not talk for 6 months. My voice has changed drastically and I can no longer sing. Because of this, we suspect I had vocal chord damage. I have a deviated trachea and am an almost impossible intubation. The hospital called in a retired, prominent anesthesiologist for my surgery. I have to have a special scope because I am such a blind intubation.

When I cough my upper airway also closes off.

I use a cuffed trach and have to take the cuff up and down frequently. The episodes of my airway closing off are increasing and I wonder if I have cuff related tracheomalacia (?)

I cannot use the passy-muir valve on or off the vent. Off all the air never goes up due to the upper airway resistance so it gets uncomfortable and my voice is inaudible. On the vent all the air leaks out my stretched stoma and won't go up.

In order to talk I have to push my trach up and slightly right. I don't know if this is because of the deviation or possible vocal chord damage.