Sorry about the quiet week. I didn’t intend to be silent this week, but Mommy duties were hot and heavy. I don’t even know how to describe it all…it’s been…trying, to say the least.
To hit the highlights, we’ve been to the doctor 4 times, including an emergency trip to Mayo, which led to a doctor refusing to see us and a return trip home less than 12 hours later. My anger level hit a point so high, that I was tempted to actually physically assault a physician. And I think she could sense it, because she kept trying to talk to me and explain to me, “where they were coming from.” At that point I had to walk away.
So, to back up and retrace my steps, this is how the week went: George was vomitting excessively during the middle of the night, multiple days in a row. ER visits, tests, doctor appointments, etc., etc. No great improvements. New pediatrician decided that an emergency MRI was in order, waited at the hospital, got the all-clear. Two days later got a call back that MRI was not all clear. Need to be at Mayo ER in the morning for admission. Scramble, scramble, scramble. Leave for Rochester at 9 p.m. on Friday, arrive at 3:30 a.m. Saturday. Get to ER about 9 a.m., wait to see doctor, go through exam and told to go home and wait for appointment in two weeks.
Yep, I lost my cool a bit.
Now, to give the doc credit, we have known about George’s “gaps” in his white matter for a little while now. But the new report wasn’t worded the same way…and somehow the pediatrician here and the doctor there miscommunicated, leaving us with a lot of time, hours and money out the window. (By the way, did you know that we’re in the middle of soybean harvest here???)
The official findings read as such (and I will quote directly): “Abnormal white matter signal is identified in the paritrigonal occipital region bilaterally with a more focal 8 mm signal abnormality lateral to the atrium of the right lateral ventricle.” Going on to say: “Impression: Abnormal exam. Concern for dysmyelinating disorder or storage disease.”
There’s a lot of scary big words in there, and the age of internet doesn’t help much.
Now, don’t get me wrong, I was relieved that George’s condition didn’t need hospitalization at the time…there’s been many times that that hasn’t been the case. But I didn’t appreciate the doctor’s implication that I didn’t do enough communicating to the physicians at Mayo. I also didn’t appreciate the remark that (and again, I will quote her), “We know there’s something in the brain that’s not supposed to be there, but we don’t know what it is. Since you’re already in the process of testing for it, we can’t do much more now. You have an appointment in a few weeks, we’ll see how things go from there.”
So, here we are, at home…which is a very comforting place to be. Unfortunately, my confidence in medicine, and in myself, has been shaken to the core this week. I balance a fine line the way it is, always wondering what is normal, what isn’t, when do I need to be worried, when are things just normal childhood stuff?
If anyone reading this is a neurologist, or knows of a great pediatric neurology center, or has connections to Mystery Diagnosis, please, drop me a line! 🙂
Hey, on a positive note, Big Bro aced both his spelling tests…ahhhh, a nice dose of normalcy. What a feeling!
Sorry to hear about George’s week. I can only begin to imagine the rollercoaster and the physical and mental exhaustion. I’m sending you all sorts of prayers, good mojo and love. And while I’m at it, I’ll start asking about really good neurologists.
Hang in there, Val! You and your family are in my prayers and thoughts.