Wednesday, September 3, 2014

Upper EnDO or EnDON'T

We're at a crossroad again. I'm standing here (actually sitting) trying to make an educated decision about how to proceed. We've hit a few rough patches this summer including:

  • a battle with pneumonia (a four letter word in our home)
  • a hospital stay (likely more pneumonia)
  • a sleep study (moderate obstructive apnea)
  • some insane sleep disruptions (full blown night terrors with screaming and tears)
  • the addition of a suction machine (like the one used by your dentist)
  • another mystery illness/infection that has resulted in another round of antibiotics (don't judge, you're not in our shoes)
It's time to make some more decisions and I don't feel qualified to make them, but we're the only ones that can say yes to the proposed course of action that includes:

I know it doesn't sound like a lot or even very drastic, but I see what they truly are…milestones. The end of the small, easy tests with simple answers. The tide is changing. The stakes are getting higher. I had finally found my sweet spot with our day to day routines. Now I am just standing here with no idea which way to turn or what it may mean for Evie and for us if we do (or don't) pursue some of these options.

Am I more afraid of the obstructive apnea or of a surgical procedure to remove her tonsils and adenoids? (which in all likelihood the doctor will not support, but I have to ask)

Am I comfortable authorizing MORE testing, uncomfortable testing that requires sedation and a hospital stay?

What changes will we have to make to her diet if she is now aspirating food particulates like we suspect?

It is a ever changing world that we live in. I find it unsettling most days. (or at least when I allow myself to think about it)

If you ever think you're tired of your monotonous, boring, somewhat predictable life, please take a moment to be thankful for it because the alternative can be downright nasty.

1 comment:

  1. Oh I am so sorry you are going through all this- it sounds like our last few months. Clearly I can't advise you, but for us all the investigations were worth it. Jess is so much better since having T&A out and the gastrostomy. Since then, she hasn't had any chest infections or ambulances called. Clearly we are now facing new issues (repeated UTI's with antibiotics ++++ and serious reflux which will probably need a Nissens) but life is much better than it was 6 months ago, because of those surgeries. I hope life gets better for you all soon too. Much love xxxx