This morning we visited S's nephrologist (kidney doc - for those of you outside the sicko community). He had a lot to say and a few suggestions. Based on his clinical findings, S does not have kidney disease. The swelling he experienced was not kidney related.
She DOES have high blood pressure but it does not need to be treated with medication. Apparently, although S has a track record of having high blood pressure (see graph above), her pressure drops down enough on its own (the dips on the graph that drop below the yellow line). Because she is able to do that she doesn't the sustained high pressure criteria to be medicated. But this will need to be monitored. Shocking eh? What isn't being monitored with our girl?
So now that we have a diagnosis of high blood pressure...which is nice to officially know - however...it doesn't explain the "WHY?"
The nephrologist has a few theories:
If her heartrate issues aren't cardiac, or kidney...then he thinks it has something to do with a surplus of stress hormones. Basically what he thinks is that her autonomic system is so sensitive, that it over-reacts to even the slightest stimulus. For example, her heart rate shoots up to dangerous levels when she runs a slight fever of 100 degrees. As for the reason...he doesn't know. Environmental? Allergy? Neurological? Chemical imbalance?
I was actually the one who brought up pheochromocytoma. Its a rare adrenal tumor I discovered on my late night medical research. The doc admitted that he considered it, considering her symptoms - but didn't want to pursue it right now because of the other extensive testing that is coming up. (If the problem is neuro - the MRI tomorrow will show it). I guess the testing involves some things that would be challenging for a toddler, so we will hold off for now. If the other tests don't show what is going on, then we will revisit the topic.
So there you have it. High blood pressure, not kidney related. And a possible adrenal issue.
I must sleep befpre our big day tomorrow. S's MRI is at 1:00pm. She can't eat at all and is going to be miserable and has to be sedated. Procedure is about 45 minutes long with an hour before for preparation and a few after for recoery. Then she can eat.
Things are still not well with my job....my days there are numbered but secretly(or not so) I am excited to be home with our girl.