- 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)
- an Upper Endoscopy (requires anesthesia which geeks me out a bit)
- a PH Probe/Impedance (requires a hospital stay with a tube down her throat)
- another (third) Modified Barium Swallow Study (it counts as 1 of her 35 therapy visits)
- a conversation about her tonsils and adenoids (remove or not remove)
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.
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
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