April 27, 2011

Surgery Date Set!!!

June 23.

That is the date of my daughter's surgery.

I am over the moon about this. This surgery is to close the stoma (or hole) left from her tracheostomy. My daughter, A had the trach, or breathing tube, in her throat from 4 months old until last July, when it was unexpectedly removed by her ENT at age 4. Since last July, she's had no actual breathing tube, and this alleviated so much stress from me, as now I am able to leave her with someone other than a nurse or my best friend (who was trained in how to care for her) and no longer have to carry around a suction machine, dye trach ties and do the thousands of other things that one must do when your baby has a breathing (and feeding!) tubes. Getting both tubes removed last summer was nothing short of a miracle for us.

Yet, although her trach was removed, the hole in her throat remained. Her ENT wanted to wait a year before closing it, to make sure she really could breathe well without it. A went through this entire past year just fine, even having a few colds and a bout of croup. A few breathing treatments with the nebulizer and she was good to go. So, she's ready to have the hole closed.

Because A has spent virtually her entire life (from age 4 months to present) with a tube or open hole in her throat, giving direct access to her lungs, there has been many things she has never done. Most things involve water; immersion in water, or even water trickling down her trachea, could drown her instantly. So, once she has the surgery and is healed, for the first time EVER A will be able to:

Go in a pool
Take swim lessons
Take a bath with more than one inch of water in it
Have shampoo rinsed from her hair without having to tilt her head back all the way
Have water drip down her face
Take a shower
Go in the ocean
Run through sprinklers

As you can see, this is huge for us. Imagine, being almost 5 years old and never, ever have been in a swimming pool. Or taken a full bath. Before this would have killed her; soon, it will be her delight.

In the same surgery, her opthomologist will also do an eye surgery on her left eye to correct her amblyopia, or lazy eye. Although her left eye is legally blind, with something like 20/200 (or it might be 20/300, I forget) eyesight, it's better than we had previously thought and this should help her even more.

I CANNOT WAIT for this surgery--it will be a one night stay in the hospital, and then a week to heal. Hopefully she'll be healed in time for her 5th birthday, just a week after the surgery.

And I know just where I want to spend her birthday.

Splashing in the local pool.


  1. Best of luck to your little girl! I hope everything goes smoothly and she recovers quickly :)

  2. This is such wonderful news! Just reading all of the things A hasn't been able to do, but will be able to do after surgery makes me realize just how much many of us take for granted every single day. Here's wishing A a smooth surgery & even easier recovery! Can't wait to hear about her first swim!

  3. What great news! Prayers are being sent your way. My grandson
    Was born 2 lbs 3 oz @ 26 weeks ... I know the hospital routine
    All to well. Jace does have a g tube so he eats at night to catch
    Up on weight. Some medical issues but thank God everyday
    For my little guy. May God bless you and A on her new journey.
    I can only imagine your smile when you see her swim n such other
    Activities . All happy tears. Many Hugs

  4. That's wonderful news!!! I can't wait to hear all about her first experiences in the pool, sprinkler, and a bubble bath!!

  5. Great news! Very happy to hear. I love that you're going to celebrate at the pool, that's why you're an awesome mom!

  6. Awesome!!

    My son has been without his feeding tube for just a year now, and still will show me the scar and ask if I remember it... yeah kid, you had it for 7 years, I remember...


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