Friday, May 8, 2015

Dental visit

A couple of weeks ago, I took Zadie and her sister, Beatrix, to the dentist for regular check ups.  It had been about a year since Zadie's last dental visit.  She was such a cooperative kid for the dentist!  Considering how willful (to put it nicely) she can be, it was amusing to hear the dentist and the assistant gush about how great she was.  She sat where they wanted her to, opened her mouth when they wanted her, etc.  The dentist saw a small cavity, unfortunately.  They don't normally take x-rays this young (Zadie will be 4 this month), but the dentist wanted to confirm her belief that the cavity was not very deep.  Since it isn't very deep, and since she's so cooperative, they plan on taking care of the cavity using just novocaine.  They mentioned using laughing gas, but with her airway issues, it would be best if we could avoid anything like that. 

In looking at the x-rays, Dr. Emelie noticed that one of her permanent adult teeth is missing.  She said it's possible that it's there, but just isn't showing up, but it looks like it's not there.  From what we have heard from other parents on Pierre Robin Sequence groups we're in on Facebook, it seems like a fairly common occurrence.  I'm interested to find out just how common it is. 

Additionally, one of her teeth is loose already.  It's one of the front upper teeth. Last year, she had a bad fall which badly bruised her gum, and that could have contributed to this.  Coincidentally (or maybe ironically?) the loose tooth is in the spot where there is no adult tooth. 

The dentist office has an orthodontist in the office some days, and Dr. Emelie suggested that Zadie see him at one point, just to have him take a look.  He happened to be in the office that day and took a quick look.  He said there's nothing to do now, but we'll talk more down the road.  Kids with PRS often have lots of dental issues, so I guess we're already starting to see that. 

She's going back next week to get the cavity taken care of. 

Wednesday, May 6, 2015

6 months since decannulation!

I haven't updated in about seven months. The big news since the last time I posted an update is that Zadie was decannulated (had her trach removed) in October 2014.  As I re-read what I wrote in September, I see I was resigned to the fact that Zadie was going to have her trach for another winter.  Thankfully, we saw a wonderful doctor, Dr. Atlas, who is a pulmonologist in at Goryeb Children's Hospital in Morristown.  At our first meeting, he seemed as confident as we were that Zadie didn't need the trach anymore.  We were given the blessing to begin capping 24 hours a day (previously it was only approved for waking hours) and Dr. Atlas encouraged us to leave Zadie's trach out for a few minutes each time we changed it.  We made an appointment for a few weeks later to see how she did and to possibly schedule a bronchoscopy/decannulation. 

A little more than a week before the appointment, I did a regular trach change and let Zadie run around with a "naked neck" for a few minutes.  Well, she enjoyed it so much that she wouldn't let me put the new trach back in.  It ended up to be about 15 minutes that she had the trach out.  She was doing fine, but until we were absolutely sure she was ready, we had to put the trach back in.  When I finally got her to let me put it back in, it wouldn't go in.  Her stoma had closed enough in that short of a time that the trach size she had been wearing for almost two years wouldn't go in.  I got a little anxious, but I got the backup trach in.  It was a Sunday, and since she was fine, I just waited until the next day to call the doctor.  When I did call the next day, I was able to get Zadie's follow up appointment moved up to that week. 

Since she was doing so well with everything, a date was scheduled for a bronchoscopy (a scope of her airway done under anesthesia) and possible decannulation: October 22, 2014.  She went in for her bronch and came out pretty upset, but trach free!

Not feeling too great right after waking up from anesthesia; a nurse once called it "anesthesia angry" and it is pretty accurate!
Dr. Atlas was a little concerned about the floppiness of her airway (something that Dr. Javia had mentioned in the past) so he couldn't guarantee that the trach would stay out, but we were hopeful!  After keeping an eye on her oxygen saturations in the recovery room for several hours, Zadie was moved to a room, still trach free!  The plan was to stay overnight and see how she did.  She did great, despite some puking and a fever.  I was worried this would cause them to keep her another day, but I think they viewed it as just post-anesthesia effects.  The most important part, her oxygen, was great!  She was discharged the next day and has been great since! 

Naked neck finally!!!
We have to see Dr. Atlas for a follow up appointment soon.  Her stoma is still open and most likely, she'll have to have it surgically closed.  Dr. Atlas said he would wait about a year before deciding to close it, which is the same amount of time that Dr. Javia said to wait.  It would have been nice to have a closed stoma before the summer, but I'd rather wait until the right time.