May 22, 2012

Cincinnati 2012 - Day 2 of Appointments

OMG are we tired. Ainsley's chest CT was this morning at 6:30. Wait was that today? Feels like days ago. Afterward we came back to the room and Ainsley had a nice nap. She needed it.
Earlier she was acting all crazy in that way kids do when they are over tired.

She was playing peek-a-boo in the closet.
We bought her a Magic Coloring Book at the gift shop yesterday. She was such a good girl for her FEES. She's had a blast coloring it today. 
Later she asked to get it out of the suitcase and followed my step by step instructions to get it out.

After napping Ainsley is well rested and back to her smiley self. Having a blast with her new toy, dragging it everywhere.
We had a 3:30 with the Pulmonologist to review the CT results and talk. She was entranced by Curious Geoge Goes to the Doctor (very cute) and that was good because we waited for hours and didn't wrap up until dinner time. They didn't really get to see her active at that point but appointments never go perfectly. He did get to hear her unusual sounding cough. I did like the doctor's way of thinking. He said that if you can hear the obstruction you must be able to see the obstruction. BUT he also said there can be multiple areas of obstruction which of course I already knew. He listened to Ainsley's capped breathing sounds very intently. He will be in the OR tomorrow manipulating her head and neck to see if he can determine the problem area. When he looks in the OR I suspect it will be the vocal cord/glottic area. I have confidence that he'll try his best to pointpoint the problem, I think it's like a puzzle to solve.

The CT of her lungs looked better than they expected. Not perfect but good. Certainly not worse. We'll learn more tomorrow I'm sure.

The other thing he said that was very interesting is that Cincinnati does more airway surgeries in a year than THE ENTIRE REST OF THE COUNTRY COMBINED. WOW! So as I've been saying, if anyone can help us figure this out, this team is the one because they see more complex airways than anyone else.

But Ainsley's airway is complex. I have kind of a sickly feeling. I'm glad we came, but I'm just sensing we are going to come away confirming a lot of what we already knew. But that would be okay. Like in 2008, I just want to know I've done everything I can. After the scope they will give their impressions, but the way the process works is that the entire team meets to discuss their findings and summarizes that into a report and treatment plan. That could take weeks to get.

So we'll be admitted for a reflux test called an impedance probe afterward so I'll be staying with her at the hospital.

On a funny note. After dinner at the horrible cafeteria we headed back to the hotel. On our way we found The Chipmunks. I know Evie and Adrian would get a kick out of seeing these so I took the photo op. But Miss Ainsley thought they were real or something and was terrified!

Look at her trying to run away.

I did get this picture of Ainsley with Sheryl though that turned out great. Ainsley is such a sweetie she smiled when I asked her to, but you can tell by her legs that she was trying to keep as far away from Alvin as possible. 

Stay tuned for tomorrow's news. Thanks for reading and caring. 


  1. sending our love to you and Ainsley!!!!! Hoping your apts go well!! we are keeping you in our thoughts and hoping you get good news!love wyndi

  2. Oh man. I'm feeling anxious for you! I hope you all get a good night's rest and that tomorrow goes well.

    Thinking of you!!!
    Christy oxox

  3. Good luck today Susan. Thanks for taking the time to update us all.


  4. Doing the backwards thang!!
    Surely her personality is getting bigger by the second, Is it not?!
    Her expressions, her actions!! WOW!
    Love that you held her "captive" by those dreaded chipmunks!!
    Too cute!!!
    Man I was hoping this would be all you wanted it to be, information is wisdom and I think you have very many wise people on your side.

    I missed your calls it was a long weekend here, Victoria day. (Do you all celebrate that in the states? We played hard and were out for the long weekend.


    Eager to hear everything in greater detail with you.