Thursday, June 11

Sucker Punched

Yesterday Ainsley and I spent the morning at the ENT & Audiologist.  This was a follow-up appointment to her Iowa hearing test in late April.  We found out Ainsley's 4th set of ear tubes in her L ear was dislodged so they pulled it out as they were cleaning her ear.  Her L ear now has a ruptured eardrum affecting 30% of her ear drum. 
In happier news Ains started gymnastics Monday night and did a make up night on Tuesday since we are traveling next week.  She was super excited to have 2 nights of gymnastics this week!
Back to Monday...I had prepared Ainsley's ENT/AUDIO history that showed her L ear was normal at birth and her hearing has been getting progressively worse over the years.  The ENT explained (after she pulled out the 3 year ear tube that was placed only 6 months ago) that the infection/ruptured ear drum would explain the hearing loss in the L ear....I disagree 100%.  It doesn't explain the progressive loss over the past several years.  She also shared that she wanted to see Ains in 1 month and if she had fluid on that ear she would place a 5th set of tubes in her "L" ear--an adult tube...
Ainsley and I then traveled to her hearing appointment after the ENT ensured her ears were clean and they confirmed similar hearing results to the April Iowa test.  After testing Ainsley for 45 minutes in the sound booth--the audiologist said that she was confused by some of the results and wanted to see Ainsley back in a couple of weeks for 1 hour of testing.
Ryan and I talked a LOT about our options yesterday.  We do NOT feel comfortable (1) standing by without answers on why Ainsley's left ear continues to decline and now is her worst ear--at this rate of progressive loss she will be moderate/severe loss in a few short years (2) we are not comfortable doing another set of tubes without a second opinion.
I did some quick research and found out the #1 pediatric ENT clinic in the US is Mayo Clinic in MN.  I called them yesterday and since Ainsley has been seen at Mayo before they let me consult with the ENT department by phone. 
The lady I spoke with yesterday listened, I mean really listened to me.  She asked about her genetic/muscle history because she saw her clinic notes.  She said this will help her to determine how many audiologists should help with her hearing test. They have options for 1 or 2.  They thought it would be best to schedule Ainsley with 2 to make sure they get a good reading.  This was a breath of fresh air because the local ENT clinic I consulted with for a second opinion yesterday scheduled us for a 30 minute appointment (hearing test + ENT visit)....rush, rush, rush.  We need a team that will take time to dig in and figure this out and make a sound recommendation on what we should do with her left ear.
The Mayo ENT staff member wanted to know if Ainsley needed an ENT specialist...I didn't know there was such a specialty.  Their specialists see and operate on the more complicated kids who have had tubes placed early (before 1 years of age).  Ainsley had her first set of tubes placed at 4 months.
They got us tentatively scheduled for early August, but they wanted me to send paperwork so they could make the determination if they should get Ainsley moved over to an ENT specialist and then we'd get her scheduled and book flights.
I titled this sucker punched because that is how we are feeling.  I am ready for our sweet girl to have some normalcy.  We were expecting her ears to have healed since late April and for her left ear hearing to have returned to just a slight loss level. As I was pulling all of the notes together for Mayo late last night I was struck by the sheer number of appointments that Ainsley had while we were at Iowa (295 visit summaries) in 3.5 years. That doesn't include all of her apts this past year in TX. We will pray that God will work out all of the details for the visit to MN and for some clear answers.

1 comment:

Angie said...

Shelby I am so sorry about this latest news. Ainsley does deserve answers and she's lucky that you are such an advocate for her. I think Mayo is the best out there and I hope that you are FINALLY able to figure things out.