Under Pressure

We (S and I) went to a consultation with her pediatrician Tuesday. It was basically, a catch-up with where we are in terms of testing, visits to specialists, etc. Her pediatrician is FANTASTIC, but hadn't received all of the notes about our recent visits, cancelled MRI, etc. So she was extremely pretty surprised to hear that we had visited the nephrologist and had gotten a diagnosis of hypertension. (A few weeks before our cardiologist REFUSED to label her hypertensive because he said blood pressures are unreliable in kids under 3).

So, needless to say, she was a bit outraged surprised that they also cancelled the MRI because in her opinion "The problem is most likely neurological". Fan-FREAKING-tastic. Exactly what every mother wants to hear!! She is consulting with our neurosurgeon and nephrologist to come up with a course of action. (The picture above is her blood pressure readings. Her left side was slightly higher and there was a 20 point difference between her arms and her legs. Arms: R80/52 L82/54 Legs: R100/62 L108/50).

She mentioned a Flash MRI as an option (essentially, they wouldn't have to put her under general) but that wouldn't resolve or rule out the pheochromocytoma angle. The thought was to put her under general (which will likely cost us a few days in the hospital) and scan her abdomen as well looking for any abnormailites/tumors/etc.

Although we are no closer to answers, I must mention how disheartening it is to hear day after day that there IS something wrong with your baby, but that no one knows what it is. They (doctors) throw around diagnoses like they are no big deal, forgetting that we are talking about a child. OUR CHILD! A beautiful little soon-to-be-two girl who is full of life, wonder, and laughter. Her medical issues are just a part of the whole. And she is my whole perfect girl.
This is a silly pic on the way home from the doctor's appointment!

1 comment:

Mandy said...

Such a cutie. It's so frustrating to have you and S go through all this.

I don't understand why doctors can't have a better bedside manner when it comes to giving their opinion.

Have they ever offered to use "Twilight" instead of general? It's SOOO much safer, has an amazing turnaround time for recovery, and I don't think they need to use any sort of breathing machines like they do with general.

I've used it twice for surgeries at the request of my mother (even as an adult) and what a difference.

Just a suggestion if they do opt for the MRI.