August 9, 2010

No Need for Fear

Today was D-Day.

D, as in Doctor. Our ENT (ear, nose and throat) doctor to be exact. It has been 3 1/2 weeks since A had her trach removed, and this was her first post-op appointment.

I was scared, to say the least.

You see, even though A now doesn't have a trach, I still had some concerns. Actually, one big concern. A still has a stridor, which means her breathing can get loud. Not all the time; sometimes she's a silent breather, as most people are, and sometimes the stridor is a bit loud. But sometimes, like when she is walking fast or doing some other sort of physical activity, her breathing gets really, really loud, as if she is gasping for air. However, I hadn't been too worried....her oxygen levels were 100%, she never turned blue or any color other than her beautiful natural pink coloring, and she never even appeared to be in respiratory distress. If I had ever been even the tiniest bit worried, I would have called the doctor right away.

Trust me, I know respiratory distress. In the months before she got her trachestomy (she had it placed at 4 months old) not only was her stridor really loud, but she would arch her back and neck gasping for air. A few times in the NICU, I even watched her turn blue. So I know the signs of a child in respiratory distress, and A clearly hasn't been, although she at times sounds just terrible.

So it was with great trepidation that we returned to the ENT today. I was scared that, given her stridor, he would want to put the trach back in. And now that I've had a taste of a trach-free life (for example, I am now able to leave A with friends or in a daycare setting, and she took her first trip to the beach last week) I don't want to go back. Of course, if A needed to have the trach put back in, it would be for her health and of course I would do it. But I didn't want to.

Luckily, the doctor couldn't have been more pleased. I told him about the stridor, and he said she would always have it; because she has a paralyzed vocal cord the air going around it will always make a loud sound. Hopefully once he stitches up the stoma in the spring the sound will be decreased (because she still has a hole in her neck, there is still air coming out, which makes a sound). And perhaps as she grows bigger, her airway will get even larger making the sound less. But perhaps not. And as much as I don't want my daughter to be a loud breather, or to make gasping sounds, I'd much prefer this to a trach. I am grateful, and will not let the volume of her breathing bother me or her.

Now I get to finally get rid of all her trach supplies. The machinery needs to be picked up from the company we were renting from, and the numerous supplies we have will be be donated to someone whose insurance doesn't pay for a lot of supplies. The med cart can be removed from her room (it was storing tons of supplies like extra trachs, trach ties, saline, etc). Best of all, I can finally believe that the trach is out for good. This appointment confirmed it for us!


  1. This is SUCH GREAT NEWS!!! Yay for A!!! We are celebrating with you. :) Love and hugs!

  2. I'm so happy for you!! What wonderful news!

  3. This is wonderful news! I am so glad that the appointment went well!

  4. congrats! A journey I hope I can go through with my daughter, they day we do not need the trach will be the scariest happiest day of my life.


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