Ainsley's 7/25/11 Laryngoscopy Results

[Ainsley's Mom]

Thanks for all your support guys! You are the best. Yes Ainsley kept crying after her nap. But it seemed to not affect today's laryngoscopy results terribly.

The results: Her airway looks good. Unfortunately she still can't sleep without a trach. The surgeon changed his mind about surgery.....again. As always it's complicated.

Here is my blog post with the full details and airway photos. http://ainsleyrae.blogspot.com/2011/...y-results.html

We are back in our holding pattern of waiting and hoping it will fix itself. We could try CPAP if we think we want to though that wasn't mentioned. Of course there is also the possibility he will change his mind and some day actually agree that we've waited long enough.

[Linnae's Mom]

Things are never easy are they? I was so hoping for a clear picture for you, but I think it's great you are getting the sleep study. Even though you know what will happen, there may be something that helps the docs feel more certain about what the next step should be. I noticed Ann suggested going back to Cincy for another opinion. This might be a good idea.

[bcaskey]

I think you received a great report in terms of the way that her airway looks! I'd be tickled pink if Hudson's airway looked that great! What I don't understand (especially after reading your blog) is your doctor's position. It is very easy for him to suggest "waiting" it out, but you've done that for 2 years now. He's not the one that is living with the constant challenges of having a child with a trache. It seems as though she is doing so well. How does he know that she won't do well capped at night? I'd go for the sleep study and see what happens. If there has been little change from 2 years ago, what makes him think that she'll make significant strides in the next 6 months? I know surgery is difficult (I cried every night after Hudson's LTP) but if it's a chance for her to live trache-free, I'd go for it! I know it's much more complicated than any of us know, but it sounds like things look great and they have for over 2 years. Time to do something in my opinion. Good luck! She is a doll!

[Ainsley's Mom]

Originally Posted by bcaskey

I think you received a great report in terms of the way that her airway looks! I'd be tickled pink if Hudson's airway looked that great! What I don't understand (especially after reading your blog) is your doctor's position. It is very easy for him to suggest "waiting" it out, but you've done that for 2 years now. He's not the one that is living with the constant challenges of having a child with a trache. It seems as though she is doing so well. How does he know that she won't do well capped at night? I'd go for the sleep study and see what happens. If there has been little change from 2 years ago, what makes him think that she'll make significant strides in the next 6 months? I know surgery is difficult (I cried every night after Hudson's LTP) but if it's a chance for her to live trache-free, I'd go for it! I know it's much more complicated than any of us know, but it sounds like things look great and they have for over 2 years. Time to do something in my opinion. Good luck! She is a doll!

She obstructs when she sleeps with the cap on. After about 30 minutes she has increased WOB. You can just tell she's struggling. And then she'll wake up. She's only wearing a 3.0 trach. So I think he feels like things are good enough that they might improve on their own and not be worth the risks of surgery. But nothing really changed from 2 weeks ago at her appointment. Prior to the 7/12 appointment our plan was to wait and see, CPAP if we really wanted to decannulate.

So that is why we've never done a sleep study. We already know she can't do it. But at this point I think it is important to get a baseline so we can see how bad it is and measure if there is any improvement.

It is great that her airway problems aren't worse but since she has low muscle tone and cerebellar hypoplasia I am afraid that this vocal cord issue is never going to resolve without surgery. Things could improve to the point that she can sometimes sleep but sometimes not and then the decision will just be harder although at that point maybe the chances would be better that it would be successful. Right now there is concern that even with the surgery she will still have OSA and have to keep the trach.

Hopefully that makes sense. Sometimes I feel like I'm talking in circles.

[JWorthington]

I'm sorry you didnt get the answers you were hoping for and I agree a sleep study would confirm what you are thinking, hope Ainsley catches a break soon

[Ainsley's Mom]

Originally Posted by Linnae's Mom

Things are never easy are they? I was so hoping for a clear picture for you, but I think it's great you are getting the sleep study. Even though you know what will happen, there may be something that helps the docs feel more certain about what the next step should be. I noticed Ann suggested going back to Cincy for another opinion. This might be a good idea.

Yeah, I called Cincinnati last year after the last time we went through this with the surgeon. They said because of the complexity of Ainsley's case that it is best managed locally. They also said that we are in good hands with Dr. I. (In our area he is the top airway doc.) But they also said they'd be happy to see her again (we flew there in 2008).

Funny Ann and I think alike because I'd already drafted an e-mail to our doc asking what he thinks about going back to Cincinnati (among other questions from the scope). I don't want to fly across the country but I think 2 things.

1) Our doc might feel better about making a decision if he has a colleague's opinion.
2) If Dr. Cotton doesn't think she needs surgery then I can just let it go knowing I've done the best I can

We weren't even patients of Dr. I at the time we went to Cincinnati the last time (we had another ENT that worked under him that then moved away). When we became his patient he teased us about whether it was worth it because ultimately they couldn't help us. I feel like I need his support because considering my options I need him to remain Ainsley's doc and I want our relationship to be a good one. We'll see what he says.

[LKN]

Absolutely 100% I'd make an appointment with Cinci. Not just a phone call but let them do a sleep study, an ML&B, swallow study, etc. Nathan has/had a crazy bad airway and a very, very rare birth defect, and they were able to make a difference and get him decannulated. They were the only place that could've gotten these results. Sometimes you need the guy who developed the surgery and has seen thousands of complex airways to take a look-see. I believe you have hit the plateau, and I think you are going to have to make it happen for her. Doctors have plenty of time and it is easier for them to wait and hope the situation improves...Don't let your local doc or Cinci convince you that she isn't ready or isn't worth the extraordinary effort. Cinci will be surprised when they see her in person again--pictures and a phone call can't beat in person

[Ainsley's Mom]

Originally Posted by LKN

Absolutely 100% I'd make an appointment with Cinci. Not just a phone call but let them do a sleep study, an ML&B, swallow study, etc. Nathan has/had a crazy bad airway and a very, very rare birth defect, and they were able to make a difference and get him decannulated. They were the only place that could've gotten these results. Sometimes you need the guy who developed the surgery and has seen thousands of complex airways to take a look-see. I believe you have hit the plateau, and I think you are going to have to make it happen for her. Doctors have plenty of time and it is easier for them to wait and hope the situation improves...Don't let your local doc or Cinci convince you that she isn't ready or isn't worth the extraordinary effort. Cinci will be surprised when they see her in person again--pictures and a phone call can't beat in person

Kristy, I totally know what you mean. This doctor might even be willing to do surgery if we said we WANT it. The problem is that they aren't sure it will help, so how can I feel good about that? But I do think Cincinnati would take a firmer stand one way or another. But in some ways I suspect that I will have to decide this is what we want before a doc will want to operate. She is so borderline. I would love to think that she will outgrow it but she's nearly 5 years old and good sized. She's almost 44" tall and 42lbs. Really what are the chances growth alone will do it?

[Christamae]

I see that Ainsley has low muscle tone. Weak muscles can cause extra work breathing, too. Practically everyone with Muscular Dystrophy will need a machine at night because their weak muscles cause sleep apnea. A trach is a lot easier to breathe through because their is less area to cover and less resistance. I would at least do the sleep apnea study or try the CPAP just to cover the basis.

[Ainsley's Mom]

Originally Posted by Christamae

I see that Ainsley has low muscle tone. Weak muscles can cause extra work breathing, too. Practically everyone with Muscular Dystrophy will need a machine at night because their weak muscles cause sleep apnea. A trach is a lot easier to breathe through because their is less area to cover and less resistance. I would at least do the sleep apnea study or try the CPAP just to cover the basis.

I see what you mean, that the distance the air has to travel is so minimal when breathing through the trach. The thing is her trach is only a 3.0. And often it's somewhat plugged by morning. It's hard to believe it's helping much but maybe it's just enough to keep her comfortable.

The surgeon said he would contact the sleep clinic so I'm hoping I hear from them this week. He mentioned that there are clinics where they can see where the obstruction is with special equipment, but they don't do it at Seattle Children's. He's skeptical but did mention it. Who knows where you go to get that done? That's what we really need, to know why she has trouble when she sleeps. We suspect that her vocal cords don't pull open enough but it could also be her tongue, or narrowness in the nasal palate. It would be great is the sleep study could pinpoint the exact area in the airway where the problem is.