Feb 12, 2010

Pulmonary Follow-Up

We saw Ainsley's pulmonologist for a follow-up today. I was expecting this to be a quick appointment. Just a quick, "Okay, things look great, come back in 6 months," kind of appointment. But he is a great doc and spent a lot of time talking with me. He brought up the Cincinnati chest CT from March 2008 that was the cause for the bronchiectasis diagnosis and showed it viewed next to the new scan from December. The Seattle scan had more slices but he did his best to find comparable shots and it was obvious to me (untrained eye) that there was a massive improvement. This is not new news but it was nice to see it, but darn it, I forgot to get pictures. He again emphasized how great and unexpected this is because this condition is generally considered permanent. I still wonder if what they saw back in 2008 was due to being hospitalized for RSV one month prior to the scan. The other possibility is that she was aspirating stomach content and the lungs just improved unexpectedly once she got the fundoplication.  I just want to add that Dr. D was the doc who recommended pursuing a fundo more seriously and therefore, in my mind, is responsible for a HUGE improvement in quality of life for Ainsley and us (of course credit also goes to the surgeon who skillfully performed the operation).  Those first two years when we were constantly on guard to protect her airway from damage due to vomiting were incredibly stressful. So I love this guy!

We talked at length about Ainsley's Monday surgery findings. And he assured me several times that I couldn't be in better hands with our current otolaryngologist, that he is one of the best. And if Dr. I has been ambivalent about performing certain surgeries it is a sure sign that there is reason to be so. He said he would like to talk to Dr. I after our March follow-up appointment, which is great, because after today I feel that Dr. D would be able to give good input when considering our options during the decision making phase.

After describing what happens when Ainsley cries with a PMV or Cap on he thought it sounded like collapse above the trach or, maybe as Dr. I said, due to the narrowing of the glottic area (vocal cords). A lot of pressure is generated during coughing or crying and so it also makes sense to him that things "shut down" in either place, or both.  He actually felt that the cricoid split would not put her lungs at risk, so long as the cords weren't moved too far apart. And he said that actually it could improve aspiration because the cords would no longer be so close together.  So that makes me less nervous about this surgery. We'll see, in March, if Dr. I's ambivalence has been replaced with enthusiasm for the cricoid split. Or perhaps he'll decide on some other course of action. Dr.D also said that sometimes really growth is the best thing because a very small difference in airway size can have a seemingly disproportionate positive result. So we may be asked to do more waiting.

I was pleased that he assured me that capping is a good route to get her ready for the possibility of decannulation, and furthermore if we try really hard but are unsuccessful with capping then that is also good information. He listened to her lungs with the Cap on and said there is a little pressure. And you can see it isn't "easy" for her. There could still be some swelling, gosh the surgery was just 4 days ago, so we're to give it a week and then gradually work more aggressively on capping. Of course we're to keep a good eye on her to make sure she's okay (she does have a narrow glottic area so it probably won't ever be easy especially with the trach tube taking up a portion of her airway), but we are to try to let her work through the crying a little more than we have to see if she can get "used to it" and move past the difficulty.  It's good to know that from a pulmonologists standpoint that I don't need to be concerned about damaging her lungs by having her wear the cap despite turning red. Hearing on Monday that the cords don't seem to be as fixed as previously believed (due to the scarring) gives us the license to try capping with more confidence. So here we go....

My coaster is on the way up and after today's appointment I have hope that someday Ainsley may get this trach out after all. Although it will, most likely, require a great deal of patience.


  1. Sounds like good news all the way around. Yeah!

  2. Great appointment....I would be walking on cloud 9.

    Congratulations Susan, doing the happy dance over here for you in Canada. And Susan it ain't pretty.
    (I can't dance if my life depended upon it.)


  3. Yeah!!! Sounds like a great appointment the Drs can talk and bounce things off of one another so that Aisley can get the best care possible! :)

  4. Sounds like good news. I love following your blog as I can relate to you soooo much.

  5. It's wonderful to hear some good news. (I found your blog when I was searching for other families with special kids.)
    I've been reading some of the older posts to get caught up...she is an amazing little girl isn't she. Keep up the hard work little one, everyone who reads this is very proud of you I'm sure. :)