Wednesday, January 23, 2008

Sign us up for surgery

We saw Payton's ENT today and we are officially scheduled for a tonsillectomy and adenoidectomy (aka: T&A) on 2/28/08. It will be done on an outpatient basis since she does not have any heart issues, otherwise it would have been done in the hospital. In addition to helping her sleep apnea, we are hoping the adenoidectomy will help with her persistent runny nose.

During a T&A, the doctor hyper-extends the neck. This is a problem with kids with Down syndrome, due to their risk of having instability in their atlanto-axial joint in their neck. Typically, an x-ray is taken at 2-3 years of age to see if they have the instability. I wanted Payton's x-rays done prior to her surgery, just so we know what we are dealing with. Her geneticist also wanted it done now for general reasons, because she is so active. If she has the instability, that means she cannot be put in a position that would hyper-extend her neck (i.e. somersaults, wrestling with her brother, etc). Yikes ... we may have a problem there.

Long story short, her ENT gave us the script for the x-ray and we went and had that done today too. Try telling a two year old to stand still, arms down and at a 90 degree angle with the wall ... right. Then try telling a two year old to do that, but to tilt their head down, and then back. We managed to get a few shots so hopefully the radiologist will be able to tell is she has AAI. I pray that she does not.


  1. Bethany, heart issues are not the only reason to keep our kids overnight after T&As. Kennedy's ENT kept her (for 6 days but only because she wouldn't drink) for at least one night to watch for swelling. Kids with Ds many times have floppy airways, and even when they're not floppy, they're smaller... much like the ear canals. Swelling can be VERY scary. I would ask them for just one night inpatient, just for observation and just so you have nurses closeby just in case.

    Let us know about her AAI X-rays! We still need to get Kennedy's done.

  2. Wow lots of stuff going on for you...we didn't get an accurate AAI until Kallie was 7, so if it comes back bad, maybe request another one when she gets older and can hold positions better. Lot's of prayers for her surgery in Feb. Hope all is well.

  3. I tried to respond to you on Downsyn but of course could not. I wanted you to know we were inpatient as well. Ditto what Renee said...we were told that our Doc keeps all DS patients overnight. I would push for it and maybe find some articles to support it. There was one posted on Downsyn about the time Megan was having here surgery done.
    An 18 year old w/ DS had the T&A done and died in a recliner in his living room from the surgery (suffocated from swelling). It recommend that all children with DS be held overnight for that reason. I will see if I can find it for you.

  4. I couldn't reply on downsyn either! GRRR!
    I was just going to add that our ENT said that if/when Macy gets her tonsils out she will be in the ICU over night due to the breathing problems they sometimes see in kids with DS. And she doesn't have a heart defect either.
    But sounds like your looking into it with all the info you got! Good luck!