May 23, 2012

Cincinnati 2012 - Day 3 Triple Scope

Well, unfortunately my gut was right. We got a lot of information and none of it is encouraging for getting the trach out in the future. Still this medical team's approach is thorough and I feel our trip was worthwhile. In the end I think we will have a better idea than ever of what is going on. They will discuss her case again next week and forward a formal report and recommendation. But their verbal observations today were:

  • Ainsley has multiple areas of obstruction but the primary problem is the supraglottic area of her airway, just above the vocal cords.
  • They also determined that she has a reactive airway. They saw as the exam went on that things looked worse from the contact with the endoscopic camera. 
  • There is a lot of lymphatic tissue surrounding the epiglottis.  They feel this is likely due to pooling of secretions on the area. The area is swollen.
  • They think her arytenoids are twice the size they ought to be. They believe this is a difference in her anatomy. And that may explain why she had difficulty breathing at birth, that they could not pinpoint to a specific problem. So the fact that her vocal cords don't open fully may have to do with the size of her arytenoids. The area could be operated on with an LTP, but there is no guarantee that would get the trach out and in fact would likely leave her lungs more open to aspiration. That can lead to lung disease.
  • Right now her lungs look okay, not worse than in the past but not perfect.
  • Her tonsils were huge and if they were going to do anything they recommended a T&A. This is frustrating because she went in for a T&A years ago, but the tonsils were reduced in size by the time she was in the OR so he left them. She had a partial adenoidectomy, but maybe they grew back.
  • They saw Monday that it was difficult for her to clear fluids from her supraglottic area, again I think largely due to this lymphatic tissue. In past VSS studies she seemed to have a small vallecular space and this could be because of that. Also in the past this area appeared to have cobblestoning, now it would seem that turned into larger lypmh tissue. We will have to see their recommendations about oral feedings. The possible adhesion that they suggested during Monday's FEES turned out to be the lypmhatic tissue. There is no known reason for this.
  • I asked again about Erythomycin. That had been suggested by other trach families to help with inflammation/swelling. Dr. Cotton said they usually only prescribe that for kids that are on the road to decann.
  • Based on what they saw they are actually surprised that she can tolerate the cap. But they also said that science has proven that a bumblebee can't fly. I think their preference would be a speaking valve instead of a cap, which would be okay if we aren't trying to get her ready for decannulation.
  • After everything they saw they felt she should go up a size. So she is trying out a 4.0 size trach. They said we can go back to the 3.5 if we don't like it. They feel she should still be able to vocalize because her trachea is actually good sized, so where the trach sits, is not small. 
  • Her fundoplication is in good shape. There are a few areas to keep an eye on. They are interested to see her impedance probe results. The probe was placed in the OR and we are inpatient in the hospital with the monitor until tomorrow. They will use that information to determine if stomach content is reaching the airway. The GI doc said there is acidic and non-acidic reflux. Ainsley's reflux is non-acidic. They'll give us a recommendation about her Prevacid.  
Now it's all starting to make sense to me. If her arytenoids are too large then that explains why she had trouble breathing at birth and how the vocal cords are moving but not very well. The reactive airway explains why things are always so inconsistent. And maybe even why her progress with capping and eating varies so much and why it takes so long for her to get back to baseline after being ill. I had a few tears but really I'm not too surprised and I'm glad to finally have answers that make some sense.

Here are some pictures from our day:

They gave us a coloring book with stickers to help pass the time.

 She had fun with that but she spent the most time watching Calliou on her IPad. Then she was very miffed when I put it away. This picture cracks me up. It's so Ainsley and a perfect illustration of how she shows her emotions without words.

 They gave her a wand to play with and you can see what she thought of that.

 Then her mood went downhill as soon as the gown went on. I took her back when they put her under.

In recovery. She was pretty miserable. Her two front teeth were a little loose and now they look a little bloody. I think she might lose them soon, but at least they didn't come out in the OR.

 The monitor part of the impedance probe test. I push a button any time "stuff happens".

 A close-up of the probe. It's got a wire in the center that looks like copper.

 She's not too happy. I think these tests are more traumatic than you'd think. The anesthesia makes you feel crummy. And she really just hates the wires, though we were able to convince them she didn't need the monitors and they removed her IV. Her unhappiness is not making for good test data. I'm hoping after a nap she'll wake up and get more active so she's behaving more like "normal" for the test.

I'm hoping tomorrow we can take Ainsley to the zoo to have some fun before we fly home Friday morning.


  1. Susan much love to you.
    Miss Ainsley, that look of yours in that image is over the top in cuteness!!
    I love you kiddo!
    All the love in the universe from me to you.
    I am sorry it wasn't what you hoped for, perhaps more clarification for you is a great thing at this moment.
    Man I wish I could be holding your hand and having a cup of steaming hot
    Phone me when you get back!!

  2. I have been so anxious to see how the day went!!! I am sorry you didn't get better news but I know all too well the feeling of "at least we know we have done everything we can!" I know it is hard and please remember to let those tears come when they need too. You are such a great mommy and I can guarentee that Ainsley is where she is today because of your love and persistance! Hang in there...and I sure hope that you make it to the zoo.

  3. {{{Hugs}}} Susan. Sounds like a tough day today. It's such a risk to seek answers when we don't know if we'll hear what we want to hear (even if we hear what we expect to hear). It's called hope and it's the hope that "keeps us keeping on". You are an awesome momma and Ainsley is so very lucky to have you.

    Lots of love,

  4. the picture with her lip rolled is the cutest pic!! I love her spunk!!! I just want to hug you guys so bad right now!!!! Sending our love and thinking of you and hoping you all are able to get rest and that there is good strong coffee close by for the morning!!~wyndi

  5. Elizabeth, after deleting your comment I reconsidered and decided I should have just addressed the issues you raised. There have been several websites over the years that offered what they called "pages" for people in the hospital or in need of support. CaringBridge is one and another was CarePages. This blog was created 6 years ago when those were quite popular among families in our situation but blogs were not. Blogs have gained a lot of popularity since then so I suppose you raise a point, that these days few people would understand all that and they would probably no longer question our decision to create a blog because it is now so common to do so among the special needs community. I may consider rewording the sidebar for the average public.