ENT visit/Decanulation

I’ve got tons of pictures from our most recent trip to Disney World coming up. For now I’ve gotta document a couple of things.

Arabella had her visit with Dr. Singer today. He’s the ENT that did the tracheostomy. Going to see him is a pretty big deal because we only go in every few months. It’s been 5 months since our last visit. So we went in and he did the same thing he always does…sprays her nose with some numbing stuff and then after a few minutes of chit-chat he puts a scope in her nose and down to her vocal cords. I hold her arms down with a cozy little bear hug and a nurse comes in and hold her head. She HATES it. Then again, I think anybody would. He always lets me take a peak. This time I saw white bumps:( That means her reflux medicine isn’t working. Gotta switch, ASAP.

The verdict? Nothing super spectacular but she is making progress. Her vocal cords are healing slowly. It might not be as quick as Aidan’s but we’ll get there. Aidan had his trach removed at 16 months. Arabella will be 1 next week. I don’t think that’s gonna happen. I’m really ok with it though. We are going to start capping her trach. The cap is a little device that does just that, caps the trach so that no air goes in or out of it. Once she can tolerate the cap 24/7 she is really close to getting the trach out.

Let me teach you a word.

Decanulation- aka TRACH REMOVAL!

I totally called it! I knew it was coming and I must say, I’m happy with the way it all went down. Arabella pulled her trach out. I could go into a long, complicated and detailed explanation of why and how it happened but I won’t cuz I’m tired. I’ll shorten it up;) I was going to bed and she woke up. Her bed is right next to mine. I got in bed and turned off the light and just a few seconds later I heard wheezing!!! That little stinker! I jumped up to check on her and sure enough, her trach was sticking out. Freaking out, I yelled…ok screamed for Rich to come and help me. There wasn’t really anything he could do but it made sense to me at the time. I tried to calm myself while praying/pleading out loud. I was able to very quickly undo her trach tie and slip the trach back in. FHEW!!

I’m so grateful I was right there when it happened. Having a trach baby comes with a great deal of stress. It’s stressful from day one but I personally feel like the stress level rises when they get older and more aware of it. This is right around the time I start to get really anxious for the trach to be removed. Ah well. Disaster averted for now. As for next time, all I can pray for are similar circumstances.

Here's a link to read about the 1st time Aidan pulled his trach out.