Day One of Annie's Salivary Gland Ablation

We made it to Columbus, Ohio yesterday evening at 9:00pm after a 13 hour drive.  We had a room held for us at the Ronald McDonald house across the street from Nationwide Children’s, but we soon learned that checking into a Ronald McDonald house is not as quick or easy as checking into a hotel.  First they took us on a tour, then they explained all the rules, as well as the chores that are expected of us during our stay. (Pictures of the Ronald McDonald house coming soon.)  We filled out all the paperwork and then were finally taken to our room around 10pm.  Then we had to put our sheets on the beds and make up our room.  

By then Annie started having more myoclonic seizures even after getting a dose of Ativan in the car for seizures that lasted over 2 hours earlier in the evening.  By the time I got her in bed, she started with a grand mal seizure on top of the myoclonic seizures—something I’ve never seen her do.  I ended up giving her a dose of Diastat to stop it all, yet Annie continued to have several more grand mal seizures—another thing she’s never done!  Diastat has always stopped seizures almost immediately.  We starting thinking about taking her to the ER, but she finally calmed down around 11:30pm and we were able to go to sleep.

We woke up this morning at 4:45 in order to check into the hospital at 6pm for Annie’s procedure.  Annie had the first portion of her salivary gland ablation surgery around 8:30pm and was in recovery from 9:30am-12:30pm!  The doctor injected her right submandibular and right sublingual glands—the left submandibular and left sublingual will be treated next week.  He planned to inject one parotid gland today, either the left or the right—whichever he could more easily access.  However, the parotid glands are accessed through the inside of her mouth through the duct in her cheek, and Annie has too much thick tissue build up on her cheek walls for the doctor to get to the ducts of the parotid glands.  Annie usually chews up her cheek and tongue when she has seizures, so I guess 8 years of that has resulted in really thick tissue.

Annie remained on CPAP and oxygen until about 4:00pm when she finally woke up.  She started coughing and struggling with phlegm in her throat, so I took her CPAP mask off in order to suction her.  I noticed that without the CPAP she was keeping her oxygen saturations at 95-100%, so we left her CPAP off for the rest of the day while she was awake.  

She was pretty alert and content until about 7:30pm tonight when she started growing more irritable.  She got some Tylenol since she hadn’t had anything for pain up to that point.  Then by 8:30pm they discovered that her temperature had spiked to 103.2!  (At about 6:00pm her temp was 97.8).  They don’t know what would be causing the fever, so they’re calling a doctor to come check her out.  Everything was going so well earlier today—I was feeling so good about all of this and was thrilled at how smoothly everything was going.  Now I’m not even sure if we’ll be able to discharge her tomorrow.  We appreciate everyone’s thoughts and prayers for her.  Please continue to keep her in your prayers.

Here's a few pictures from today...

Wasted even before the procedure--from having so many seizures in the previous 12 hours.

Annie's room.  I feel bad I ever complained about the hospital room we were in for 6 weeks last fall.  It was a luxurious mansion compared to this, but at least we don't plan to be here long!

Annie on CPAP and oxygen several hours after coming out of recovery.  Bruising from the ablation.

Finally awake!

Annie's tongue is the upper portion of what you see.  The bottom portion is the tissues under the tongue that normally lay beneath the level of your bottom teeth. She received an injection through that tissue and now it is swollen up well above the level of her bottom front teeth, pushing her tongue to the roof of her mouth.  This is clearly why they only treat one side at a time.

Trying to use suction to clear her throat of all her thick phlegm is a little tricky with this much swelling!