This has been a long time coming. Do I dare say I was excited about this visit? (I use the term 'excited' loosely.)
Our family has a love/hate relationship with the ENT.
4 years ago...It was an ENT who would initiate the diagnosis of Neurofibromatosis in my oldest child. First doing allergy testing...Then, treating several bouts of Strep Throat....Further investigation would discover hearing deficits...leading to an MRI, discovering 2 masses on Bailey's auditory nerves.
It was a whirlwind of memories....
Us being a family that is familiar with Neurofibromatosis...I ALMOST expected the diagnosis. ALMOST.
With tumors being discovered on Bailey's auditory nerves, the doctors went back and forth about a diagnosis of NF1 AND NF2....Which has been termed as "IMPOSSIBLE"....And we have STILL battled with the possibility of this being what Bailey is dealing with.
I'd be lying if I said I wasn't thinking about NF being the reason Rachel and I were at this appointment. In the back of my head I'm saying a silent prayer, that Rachel's issues weren't related to NF...But in the long run...When you HAVE NF....EVERYTHING is related.
When we meet the nurse and doctor...I find myself SO HAPPY that I didn't have to spell out NEUROFIBROMATOSIS. In fact, everyone we came into contact with today, knew exactly what it was...And how to spell it! (Thank God for the small things - right?)
A detailed history was taken....Including the 6 positive strep tests...And endless amounts of antibiotics that were taken, that never seem to quite cure the infections.
But - it only took our doctor a few minutes of looking into Rachel's mouth to see...that WOW...her tonsils are HUGE. And "Abnormal Looking"....The size of "Golf Balls".....
Yeah...We've been told this many times before....Only to have the doctors tell us that tonsils are not removed routinely anymore....and they give us the "let's-wait-and-see" approach.
Just a LITTLE Frustrating!
Our doctor said...."Ummm Yeah....that's not happening here....Let's get Rachel fixed up!"
Music to my ears!
Speaking of EARS....we were sent down to have a hearing test...Since Rachel has been complaining of constant "noise" and "ringing"....And that test was also "abnormal"....And our doctor tells me that it could all be connected to the tonsils/adenoids.....
Makes Sense...
I was asked about Rachel's sleep habits....and was FINALLY able to speak to someone who put this CRAZY puzzle together for me.
Rachel's sleep habits....Um....Well...
To start, Rachel has night terrors....and very VERY restless nights. There are times that she gets out of bed...and just stands in the middle of her room, SCREAMING. She literally tosses and turns the entire time.....
And the SNORING.....
So the Doc places this thing around Rachel's nose (CPAP type thing) and hooks it up to a monitor....And the we were told that she has AWAKE apnea....Which means almost 100% that Rachel has SLEEP APNEA.....(further testing will be done AFTER the tonsil/adenoid surgery)
We also had the doctor take a look at Rachel's nose....
Rachel gets VERY frequent bloody noses....USUALLY brought on by her temper tantrums.....I mean MAJOR GUSHING nosebleeds.....
I guess Rachel's veins are "ABNORMAL" too. 3 or 4 times the size of a normal 11 year old girl.
Figures.
So -- Cauterizing the vessels in Rachel's nose, will be added to the list of things to do while she is getting the tonsil surgery...YAY...One-stop-shop!
On top of ALL of this...Our lovely ENT wants Rachel to have an MRI. She felt some "abnormal tissue" around the neck area..."Thickening" she called it....Which made me think of a family -- whose blog I follow, who also JUST visited an ENT...and is dealing with tumor-y complications....
SIGH....
ONE-STEP-AT-A-TIME
Rachel and I left feeling HAPPY...or....at least.....relieved that SOMETHING was being done!
We stopped at the vending machines and got a soda for the ride home and talked about how much Ice Cream Rachel thought she could eat.....
"A MILLION TONS", she says.....
I guess we'll see about that! :)
STILL THRIVING!
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