Hospitals Smell Funny

Brielle's cerebral palsy affected her mouth most of all. That's why she can't talk, has issues chewing food, and can't control her own saliva very well.

She had surgery nine years ago to remove the salivary glands under her tongue (the ones that "fire" all of the time), but that did not help her drooling issue much at all. Usually when doctors perform this surgery, they also cut and cauterize the glands in the hinge of the jaw as well (the ones that "fire" when a person eats). However, with her eating issues, we were afraid her mouth would be too dry, so she only had the other procedure done. In the end, the surgery was not a success and Brielle had to go back on medication to keep her mouth dry.

Although she has been on the medication for years, the drug company stopped manufacturing it two years ago. We tried two other medications, but neither worked half as well. So, she hasn't taken any medication for the last year or so.

We had hoped that the drooling issue might improve as she got older or when she got her braces removed, but it did not get any better.

Although we could have the doctors go back and do the other surgery for the salivary glands in the hinge of her jaw, it's pretty invasive with a much more difficult recovery than even having wisdom teeth removed. Our ENT (Ear, Nose & Throat doctor) suggested we try using Botox injections in those glands to see how they react first. If the Botox works, then we know the other surgery would help and be worth while putting her through the difficult recovery.

After our health insurance company first denied the Botox injections (twice), we finally got it approved. When I told Brielle about the procedure two days ago, she cried for about 10 seconds. She is so fearful of anesthesia, with good reason, since she's been under nearly a dozen times for one thing or another. Then she signed to me, "I big girl. I brave." My heart broke.

Ready for her procedure!

She had the procedure done yesterday and she was such a trooper. She did great through the intake, talking with the doctors and nurses, getting on the gown, and getting on to the gurney. She only panicked when we got to the procedure room. Instead of an empty surgical room, it was a radiology procedure room with lots of big, scary looking equipment and machines (they used ultrasound to guide the needle for the injections). When they wanted her to scoot herself over under the big x-ray machine over the table, she just freaked out. We had to move her over ourselves and she cried and scrambled until they got the mask on her and she drifted off. I just hate seeing her like that.

Doing ok!

In recovery, she did beautifully. Usually she cries hysterically and is nauseous (effects of the anesthesia). But, we had a great anesthesiologist who gave her several medications before and during the procedure to help out with both of those issues. When it was all over, she was still one very sleepy girl, but she managed to give me a sleepy "thumbs up".

Once she was able to drink a little water and get her sea legs back again, we headed home. Brielle slept the entire way.

Still so sleepy!

I really hate having to put her through these things. It truly breaks my heart. But, I am so proud of her!

The doctors said we might be able to see a difference in her drooling on the first day and we did! It was at least 50% better. The full effect won't happen until two to four weeks from now, so we'll know more then. The Botox should last about six to nine months. After that, we'll need to make a decision about the other surgery. We wouldn't put her through Botox again for this, but this will show us if the surgery would be worth it for a long term solution.

(And not to worry, the human mouth has lots of little saliva glands in the tongue, cheeks and roof of the mouth. So, she's got plenty of saliva to use when eating.)

Thanks to everyone who shred their love, good wishes and prayers for us! We'll keep you posted!

Botox isn't just for wrinkles! -- Botox has been around for decades. Cosmetic doctors only began to use Botox for wrinkles in about 2002. Prior to this, Botox was most often used to relieve muscle spasms of one sort or another, including for patients with cerebral palsy. Brielle has had Botox injections three other times for her legs and right arm before she finally had surgery on her right leg five years ago. So, this wasn't our first experience with Botox!