Today I can finally breathe a huge sigh of relief! We’ve had a very stressful couple of days. The Doctors, well one Doctor in particular, was throwing around big scary words and fear mongering. She was wanting us to make an impossible decision. She wanted us to consent to Noah having a trach. Talk about coming out of the blue. It completely caught me off guard and I immediately welled up, listened to what she had to say and as soon as she left, called J.

The fact she mentioned it didn’t surprise me as it seemed like that’s what they have been eluding to for quite some time but to have those fears confirmed took the wind right out of my sails and I became a blubbering mess. I couldn’t understand how this was the answer. How this was going to make everything ok. I had a lot of questions and concerns.

But in the end, our ENT didn’t believe it was the right choice (at this time) and took it off the table. Thank goodness because after reaching out to the CHARGE community, other specialists/nurses/doctors that know CHARGE, talking to our Pediatrician back home, researching trachs and the implications that would bring, we were ready to fight this decision and walk out against medical advice (AMA). Our instincts were talking to us very loudly that this seemed so drastic, out of the blue, and not the right decision for our little guy (at this time at least).

Never in my life have I questioned a Doctor’s decision like that, especially when my children are involved, and never would I have thought I would leave a hospital AMA. But we were. Their answers weren’t “good enough.” They didn’t give me confidence or instill a sense of “this is what we need to do”. But, we were going to listen and take it all in during our big interdisciplinary team meeting today and if they didn’t have a reason other than “what if he gets sick and needs to be vented quickly” we were seriously considering declining and going home. I know it’s our right but at the same time, it was a very scary thought. I’m glad the option wasn’t even presented to us. I sort of feel validated for all my thoughts and concerns over the last 36 hours echoed by our ENT. He’s known Noah, done many scopes on Noah, since April. This other Doctor has only known of him for less than a week. I trust our ENT – hence why the decision would have been 1000x times harder if he was on board for performing a tracheotomy.

I’ve learned that the shyness I had the other day over not being listened to was not present when it came down to this. I was prepared and I was going to speak up and speak up loudly. I was going to make sure we were heard and it was the best possible and only option that we could make before consenting. But instinct prevailed this time and I got to put “Mama bear” back on the shelf for another day and another battle! 😉

Other great news we heard today, we may be getting the heck out of here TOMORROW. I’m scared to put it in writing and jinx it but as long as this modified sleep study goes ok, we’ll be out of here! I can’t wait to get home!



  • SLS

    You’ve always had good instincts Laura, trust in that. I’ve had a lot of (unqualified) ppl try and diagnose my n’s behaviour recently…I can’t even imagine the whirlwind of emotions suggesting a trach would have brought.

    • LJ

      Thanks! It is hard work. Just keep fighting using your knowledge and instincts. You may not be a “professional” but you know your son better than anyone else in the world.

    • LJ

      It went well! Our ENT said everything we wanted to and answered almost all our questions without us even asking. It went better than we could have hoped! Thanks for asking. 🙂

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