July 16, 2010

Tube-Free and Loving It!

My daughter, A, is tube-free.

Let me say that again. Please bear with me, as it's a sentence I sometimes thought I'd never write.

My daughter is tube-free. No feeding tube. No breathing tube. Tube-free.

Yesterday, she went in to the operating room to get her g-tube removed. This alone was cause for celebration, as she has had a feeding tube since she was 2 days old. I was thrilled to finally be getting rid of the Mic-Key button, as we had not used it for any purpose in exactly a year.

In addition to getting out her g-tube, she had 2 other procedures. Her GI doctor did an endoscopy to look for sign of reflux and at her stomach, and her ENT doctor did his annual trach scope (bronchoscopy and laryngoscopy) to see if she was ready to decannulate. I had no hopes for decannulation, especially after our last office visit. Seriously. I went into the procedure thinking there was a 95% chance he would say to wait another year, and a 5% chance that he would DOWNSIZE the trach to a smaller size (I wasn't even thinking about actual decannulation at that point). We had always been told that the way to get off the trach was to first downsize to a smaller size, then cap it so that she is not using it, and then if she tolerated that, they would actually take it out.

Before the surgery, we had were in the consult room talking to all the doctors involved. The anaesthesiologist came and and said "so, we're downsizing her trach?" That was news to me! Apparently, he had heard that they might be downsizing it during the procedure. This, of course, got my hopes waaaaaaay up, which actually made me upset: instead of thinking there was a 5% chance of downsizing her trach, now I was thinking there was a 70% chance, and I didn't to get my hopes up and then dashed.

The procedures took a long time, and I was getting very anxious in the waiting room. Finally we were called back. The surgeon said that the g-tube removal went well, and explained all that she did. Then our ENT came in. First he showed up pictures that he had taken during the scope. Her vocal cord is still paralzyed (well, one is; the other is functioning just fine), and her arytenoids are still very edemas and enflamed. This we knew; the results have been the same the past few years. But then he said "I thought it was time to stop mucking around; it's time this girl got her trach out".


I wasn't sure I heard right.

Then it hit me...he didn't downsize her trach. HE TOOK THE TRACH OUT ENTIRELY!!! I immediately started to shake and cry. It was so unexpected...I never dreamed that it would have come out that day. It wasn't even on my radar as a possibility.

The next few hours were the big test....could she maintain her oxygen levels without her trach? She went into the recovery room, with the trach on the bedside "just in case". She maintained a blood-oxygen level of 100% there, and all through out the night and today. Every hour that passed by made me happier and happier. This trach was really out, and was not going back in.

We just got home from the hospital a few hours ago. It hasn't really hit me yet just how freeing it will be. No more having to lug around a suction machine everywhere I go. No more having to make sure I have catheters, saline, and other necessary equipment. No more dying trach ties (I used to dye them pink, purple, and other colors to try to make them more fashionable). No more nurses (we were discharged immediately from her nursing agency). No more having to have a nurse or myself stay at school with her. I could have a regular babysitter. I could take her to the local drop-off daycare. I can....I can...I can...

One thing we CAN'T do yet is go in a swimming pool. I had hoped that with the trach out, soon we would be able to do water activities, which she has never in her life been able to do. However, the ENT said that her stoma will not fully close on it's own, and that even if it looks closed there will be tiny opening. So, in 6-12 months, we will have to go back for another surgery, this time to stitch up whatever is not closed up on it's own. I'm hoping to get this done in the spring, so that she will be pool-and-ocean ready by the time next summer hits.

I had come up with a list of 4 things I wanted for A in 2010....and now all are crossed off. Of course, we still have a lot of work to do, especially on speech and language issues and gross motor skills....but all that will come. This little girl is unstoppable.


talk in better sentences and more clearly

get feeding tube out

get breathing tube out


  1. That is wonderful!! What a surprise it was for the doc to remove the trach. I bet that was the best surprise you have had in a long time, one that you will remember forever!!

    Hopefully next summer she will be able to go swimming! That is something nice to look forward to!

  2. Still walking on air. Seriously. Love, Rachel

  3. I needed this good news today, I really, really did. So excited for you!!!

  4. Happy, happy, HAPPY day!!!!

  5. What awesome news! My cheeks hurt from smiling. :)

  6. Wow, that is fantastic! Amazing when joy sneaks up on you like that!

  7. CONGRATULATIONS! I have only just stumbled on your blog and couldn't stop reading. You have a wonderful way with words and your positive outlook is very refreshing. Thanks for sharing! :)

  8. That's wonderful! I realize this is slightly old news, but I had to chime in and give my congratulations, because I know what a big deal it is. I can relate - my 2-year-old daughter actually just got decannulated yesterday; she's still got her mic-key button, unfortunately (although unused for several months), but that might change. Prayers and blessings to A and the rest of your family.



  9. Wow, we really do follow parallel lives! I can totally relate to all the anxiety before the appointment, the nervous energy in the waiting room, not wanting to get your hopes up, wondering what will happen and planning your reactions. I can relate to not letting yourself get excited and crying hysterically in disbelief. I look forward to the same things--school without nurses and swimming!!! Thank you for sharing!


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