Exciting First - Ainsley Asked for Cap + Observations

[Ainsley's Mom]

Warning: Long rambling post.

I was thinking a lot yesterday about Ainsley's recent downsize. I am still torn about which trach size is best. Thinking about the speaking valve I realized we hadn't tried the cap in awhile. She'd been sick and we got out of the habit. Plus she pulls it off, so I figure a valve that's on is better than a cap that's off. So anyway, I put the cap on and with the 3.0 in she did great! She wore it for the whole rest of the day which she hadn't done since she got sick last Aug/Sept and I'd upsized her back to her regular 3.5

So then today she saw the cap on the table and asked Steve to help her put it on!!! That is crazy! I just can't believe she wanted to wear it! And she wore it most of the day. Where with the 3.5 she'd only wear it for a few hours at a time before she'd take it off.

The other interesting thing that happened today is she asked for juice with "dinner"(she doesn't eat). Usually when we give it to her she only takes a sip. So we didn't thicken it. But later I looked and she'd drank the entire thing anyway. Half a cup of thin liquids! That is another first, come to think of it.

Later she fell asleep on the floor and I was very interested to see how that would go. I kept an eye on her while posting on the trach forum. Sure enough about a 1/2 hour in she started to have trouble and we had to remove the cap. No surprise really.

The thing I did notice is that she wasn't as vocal today. So I guess like Koko said on the other post, when it's more difficult to breathe a child might be less inclined to use their voice whether or not they are wearing a valve or cap.

It is very frustrating. I want it all. I want her to have use of her voice, have an airway that promotes eating, and have it be completely effortless to breathe all the time. But since in her case that's impossible I'm going to have to give something up whichever trach size we settle on. I guess the thing that I've learned is that all the progress she'd appeared to make and then lose last summer/fall, was really atributed to the 3.0 trach she'd been wearing. Which would also indicate that though she has grown substantially since we first started capping 3 years ago, that her airway is still pretty much the same size. Otherwise by now there would be improvement. I know the reason her ENT prefers that she wear the 3.5 is because she might need it if she gets sick. I've never heard of anyone switching between trach sizes. Mostly I think it's a hassle and a liability issue not that it couldn't be done in the right circumstances. I just don't know if it's worth the hassle of getting our ENT to support that plan when we are going to Cincinnati in a month anyway. I hate making decisions when I don't like my choices.

[angelbaby]

i would wait to go to cincy before doing any changes, going in the 3.0 vs 3.5 can be more toublesome, in our case it was, we downsized to the 3.0 for a sleepstudy a few years ago and tbh he would have done better with the 3.5, ours is a unique case, we got scoped 2 weeks ago and my son swelling is better, not gone, but better, so we will do a capped sleep study again, just to see where he is at, we don't want to pull the trach to soon, it has been 8 years, he is making baby steps, he has been capping all day since age 5, so capping isn't always a precursor to decan, he really struggles when sleeping capped or no trach, and ofcourse oral eating is a challenge as well, you have to let ainsley lead the way, you can't rush it, you don't want to downsize and then not be able to get the 3.5 back in if she needs it, that could mean a trip to the OR.....my son has been in a 3.5 neo since he got trached, not many 8 years old still wearing a neo...but that works for him, his airway is just isn't able to handle a pedi, at the end of each day if ainsley is thriving and doing well, is battling with the trach size really worth risking that? i avoid the hospital as much as possible, if downsizing her puts her at risk for complications such as illness complications, ect...i just don't see that being a good trade off...sorry for the ramble, but having been on this journey of 8 years, being able to cap all day, but recognozing that decan is still a risk to my son's life, i have learned to be patient and let him lead the way....he doesn't let the trach hold him back, it really doesn't stop him from doing anything, so my advice is to go to cincy, get their opinions, but don't push for a downsize if for her risk outweigh the benefits and i don't think you will have a clear answer on that until you go to cincy, good luck

[Ainsley's Mom]

i would wait to go to cincy before doing any changes, going in the 3.0 vs 3.5 can be more toublesome, in our case it was, we downsized to the 3.0 for a sleepstudy a few years ago and tbh he would have done better with the 3.5, ours is a unique case, we got scoped 2 weeks ago and my son swelling is better, not gone, but better, so we will do a capped sleep study again, just to see where he is at, we don't want to pull the trach to soon, it has been 8 years, he is making baby steps, he has been capping all day since age 5, so capping isn't always a precursor to decan, he really struggles when sleeping capped or no trach, and ofcourse oral eating is a challenge as well, you have to let ainsley lead the way, you can't rush it, you don't want to downsize and then not be able to get the 3.5 back in if she needs it, that could mean a trip to the OR.....my son has been in a 3.5 neo since he got trached, not many 8 years old still wearing a neo...but that works for him, his airway is just isn't able to handle a pedi, at the end of each day if ainsley is thriving and doing well, is battling with the trach size really worth risking that? i avoid the hospital as much as possible, if downsizing her puts her at risk for complications such as illness complications, ect...i just don't see that being a good trade off...sorry for the ramble, but having been on this journey of 8 years, being able to cap all day, but recognozing that decan is still a risk to my son's life, i have learned to be patient and let him lead the way....he doesn't let the trach hold him back, it really doesn't stop him from doing anything, so my advice is to go to cincy, get their opinions, but don't push for a downsize if for her risk outweigh the benefits and i don't think you will have a clear answer on that until you go to cincy, good luck

So it sounds like we are in similar situations. Needing the trach for OSA. Just to be clear we are not pushing for decann and her life is not at risk by wearing a 3.0. It sounds like your son isn't impacted by the trach but I think Ainsley still is. In her case she has an easier time breathing during the day with a 3.0 because she is supposed to be wearing a valve or cap. Her night breathing is okay with a 3.0, sats in her normal range of upper 90's. I know that I would be able to get a 3.5 in if she got sick enough to need it. Which is what happened earlier this year. She did great on a 3.0 for many months. But I hear what you are saying and maybe it's not worth the hassle of this unorthodox plan. That's why we left the 3.5 in even after she was well. And I'd forgotten how well she did in certain aspects, wearing a 3.0.

After I posted last night I talked it over at length with my husband. We're going to see how she does drinking the blenderized food (which we haven't given her orally in awhile). If she drinks it like she did last summer then that will show that trach size is the issue for swallowing. Then we're going to put the 3.5 back in and see how her vocalization is. Once we have that additional information, if there really is a substantial difference with both eating and vocalizing, then we'll e-mail her ENT with all the info, pros and cons both ways and see what he says.

[jamie]

Susan, she is growing up, how exciting. Evan is capped all day, but as soon as he falls asleep he can't tolerate the cap, but of course he goes on a vent and it is a brain issue not an airway one. But still very happy that she is asking for her cap and juice.

[SammyJo]

I know my experiences are different and may not apply because of Sam's age /size, but you may still find the info useful. I definitely see a difference in Sam's ability to drink out of a sippy cup while capped vs an HME. She cannot drink bottles with the cap for one of many possible reasons. I am assuming the sippy cup requires more sucking and swallowing ability which increases with the cap. I don't think increased taste is much of a factor.
As far as speaking, I actually feel the opposite is true for Sam. The more difficult it is for her to breath capped, the more sounds she makes. There are times I feel she HAS to babble to force the air past the trach. She is much clearer with the cap and vocalizes more than with the HME, but with Sam less vocalizations would not mean more discomfort. When she struggles she also whines and cries which let's me know she needs a break. I would think Ainsley would pull the cap or ask for it off if she was uncomfortable, which maybe she is on the 3.5. That made me think again about drinking. If Sam isn't doing well capped, she also struggles to drink and gets a little out of breath. I am sure it's possible that just a small downsize can make a world of difference in comfort.
If it's not risky, I personally would give it a little more time. I am sure she will fluctuate daily with the amount of vocalization, just like any other child, but it's so easy to notice a difference when you analyze everyday. I do the same!

[shon-mg]

my son has never been able to tolerate his speaking valve and recently we downsized to a 3.0 and he wore the cap and seemed to be fine with it :) I would say it's because the smaller the tube, the more room the child's airway has.

If she is saturating fine on the smaller tube then keeping it in will help when going through the decan process.

We aren't sure if my son is actually tolerating the smaller tube as he keeps de-satting.

Good luck with your decision

[Ainsley's Mom]

my son has never been able to tolerate his speaking valve and recently we downsized to a 3.0 and he wore the cap and seemed to be fine with it :) I would say it's because the smaller the tube, the more room the child's airway has.

If she is saturating fine on the smaller tube then keeping it in will help when going through the decan process.

We aren't sure if my son is actually tolerating the smaller tube as he keeps de-satting.

Good luck with your decision

Is he desatting with the cap on or off or both? If it's just when he's capped then he's probably tolerating the trach size fine, just not the cap. The other thing I wonder is how you know he's desatting? Is it possible the pulse-ox is wrong.

I'm still really torn about the trach in Ainsley's case. After posting this thread I started full on capping. And she's been happy to wear it. Sometimes her breathing is loud but her sats are always good and she hasn't asked for it off. Which is odd. In the past she's always just pulled it off when she wants it off, but she hasn't even asked us to take it off. She is definitely not as vocal though with the cap as she is when she has the valve on.

I've been feeding her blenderized food orally and she has dramatically increase the amount she can take orally. From a couple sips back to ounces at each feeding. So I'm going to give in one more day. Then put the 3.5 in and see what if anything changes. If she is 1) far less vocal 2) less able to cap 3) not wanting to eat orally , then that would show that there are some real pros to the 3.0 size trach for her, which I would have to discuss with her ENT. Now if she does about the same, then we'll just keep the 3.5 in and drop it until we see her ENT in late May after the Cincinnati visit.

[SammyJo]

So I'm going to give in one more day. Then put the 3.5 in and see what if anything changes. If she is 1) far less vocal 2) less able to cap 3) not wanting to eat orally , then that would show that there are some real pros to the 3.0 size trach for her, which I would have to discuss with her ENT. Now if she does about the same, then we'll just keep the 3.5 in and drop it until we see her ENT in late May after the Cincinnati visit.

Curious to hear the outcome...Let us know!

[Ainsley's Mom]

Curious to hear the outcome...Let us know!

So I put the 3.5 back in on Friday. Surprisingly she is still willing to wear the cap. Her her breathing while capped is rather loud with the 3.5 but she doesn't ask for it off, nor does she pull it off like she always has in the past when it was "too much" for her. But if it weren't for the humidity portion of the equasion I'd just use a valve instead.

I think she sleeps better with the 3.5 (she's not capping while sleeping except for periodic evaluation).

Her vocalization is about the same if she is capped with either 3.0 or 3.5. With the valve she is more vocal with the 3.0.

Eating is a little better with the 3.0. But she is still eating (drinking really) some with the 3.5.

With the 3.0 she was having a lot of secretion leakage from the stoma even after a couple weeks. She's cleaner with the 3.5.

It's a lot to sort out but in the end I think we'll stick with the 3.5 and talk it over with the ENT in May when we see him after our Cincinnati trip.

[SammyJo]

So I put the 3.5 back in on Friday. Surprisingly she is still willing to wear the cap. Her her breathing while capped is rather loud with the 3.5 but she doesn't ask for it off, nor does she pull it off like she always has in the past when it was "too much" for her. But if it weren't for the humidity portion of the equasion I'd just use a valve instead.

I think she sleeps better with the 3.5 (she's not capping while sleeping except for periodic evaluation).

Her vocalization is about the same if she is capped with either 3.0 or 3.5. With the valve she is more vocal with the 3.0.

Eating is a little better with the 3.0. But she is still eating (drinking really) some with the 3.5.

With the 3.0 she was having a lot of secretion leakage from the stoma even
after a couple weeks. She's cleaner with the 3.5.

It's a lot to sort out but in the end I think we'll stick with the 3.5 and talk it over with the ENT in May when we see him after our Cincinnati trip.

Interesting that there is not an obvious distinction with eating/drinking or tolerating the cap, I really thought there would be. Thanks for the follow up!

[Bodie's Dad]

Tagged for later reading.

Similar situation going on here...


Sending positive prayers your way!

[Ainsley's Mom]

Interesting that there is not an obvious distinction with eating/drinking or tolerating the cap, I really thought there would be. Thanks for the follow up!

Yeah me too. She always backslides when she gets sick, both with eating and wearing the cap. And since she had increased secretions for weeks following RSV in December we tried the cap and she would want it off. So after so many refusals decreasing to periodic attempts as recently as Feb/Mar we stopped trying. Same with the eating. So likely it's just that she's really healthy at the moment so wearing the cap and eating are easier. If her secretions increased that .5 size difference would probably make a bigger difference. And it does make a difference just not a night and day diff. But remember Ainsley is a really big 5 year old. Her ENT has always said that the narrowest point of her airway is at the glottis/vocal cords. Her airway around the trach where the cannula is is bigger. So his theory is that trach size shouldn't make "much" difference, however you quantify "much". I do see a difference though. Just not night and day.

Another theory could be that it wasn't comfortable for her to cap with the 3.5, but with the 3.0 it was, so she got used to wearing the cap so then it was tolerable with the 3.5. And I should clarify that when I say tolerable she is happy and not complaining about the cap at all. I just think she sounds bad. But I just keep reminding myself that if she wanted it off she would take it off or at least ask for it off.