Yes, we went to our appt. on time.
No, we didn't get in right away.
Yes, they were an hour or so behind.
No, S couldn't eat or drink anything.
Yes, S was fabulous and patient.
No, we didn't get the MRI done today. And we might not.
It started with a benign conversation with the nurse reviewing S's medical history and ended with the anesthesiologist essentially refusing to move forward because of the risks to our little girl. Although I'm frustrated because we will not be getting any clues to what's happening in her noggin, if it isn't safe - then we just can't do it.
Because we don't know for sure that she doesn't have Cystic Fibrosis, or a pheochromocytoma....the anesthesiologist thought the after effects of this test were not worth the information obtained.
At a minimum, even if/when we do this test - she will have to be admitted overnight for observation. She will have to be intubated again which led to a 4 day stay because of complications the last time. And with her heart rate and blood pressure issues could lead to a medical emergency post procedure - which would be a challenge to handle because no one knows the cause.
So we wait. And explore other options.
I'm calling her neurologist to discuss her balance issue. We're going to explore the pheochromocytoma angle with an endocrinologist (as well as other thyroid/adrenal options) and continue this hunt.
Next up: CF sweat test on Tuesday morning.
For now...a nap...
2 comments:
I am thankful they are being careful, but I know the wait is so hard on everyone.
Still praying for you all.
Good job on the pheochromocytoma... quite rare, but it would explain some of S's issues. I understand that her heart rate would be elevated all the time (though I don't know much of the physiology, just the meds to treat it).
Frustrating about the MRI, but it seems that you are working with a great medical team that all have S's best interest at heart.
I think about you and I hope you are able to get to the bottom of this soon.
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