It just rolls off the tongue: “Namine’s cleft palate.” For nearly two years, it’s been that way. So whenever I say it or type it, it’s still those three words. But no longer! It’s been a week since her palate, no longer cleft, has been repaired.

Yesterday, we discovered that Namine’s palate might be damaged. If there is a hole, and her palate needs further repair, she’ll have to wait another year before her doctors will be able to do so. She has her 10-day checkup with her plastic surgeon, Dr. Denny, on Monday – we’ll find out then if she has sustained damage to it or not.

After her palate is done healing, it looks like the next step might be decannulation, not the feet surgery. Besides the fact that there might not be any availability until September or October of this year, there’s also the consideration that having a trach is risky in and of itself. Now wait a minute, you say. I thought they wanted her to keep the trach until after the foot surgery, because intubation is risky? Well, yes. Sort of. Before Namine’s palate repair, they thought her airway, while it was wider, was still narrow enough that intubation should be avoided if possible. But during the palate repair, Dr. Denny was able to see her vocal chords clearly, indicating that there is much more room now, such that intubation is no longer a worry. He also reminded us of what we already know: trach patients are more prone to infection and sickness. Let me impart some wisdom: trach infections are a bitch. The sooner we can get rid of the trach, the healthier Namine will be.

Funny little note about the website: I just now noticed that I had spelled “decannulation” as “decanulation” in the tags. Fixed!

  • I was tossing and turning over these events last night. Just when you think you have some help in your corner, it comes around and kicks you in the backside. I hope that you will get good news on Monday, and that there is no damage.

  • Leah, Mike & Alyssa

    Yes, I’lll cross my fingers for you as welll.