CT Scan Results

Well, we are waiting as patiently as possible for Whit's doctors (Geneticist, Neurologist, etc) to call us back with an explanation of the findings from her CT scan done on Thursday. Here's the story...

I always request a copy of all films, reports, etc. whenever Whit has something done because I was told from the beginning that I should be keeping records of all her health conditions to share with doctors or anyone else who needs this information. I have an accordion file full of every test and procedure that any of her ten doctors has performed or ordered. So, before leaving the hospital on Thursday following her CT scan, I ordered copies of her scan on disc and her report from the Radiologist. The disc was ready immediately, but the report was not ready. So, on Friday morning the hospital called me to let me know that the full report was ready for me to pick up. I picked it up shortly after the call. Obviously I wanted to know what the findings were, so as soon as I got back to the car and buckled Whit and Ry in their car seats I began to read. Then the tears started flowing. There were a lot of terms I didn't understand, but what I did understand was "increase in subachranoid space near the convexities" and "enlargement of the basilar cisterns" as well as "ventriculomegaly" and "cavum septum vergae." The word that stood out though was "HYDROCEPHALUS."

I know what hydrocephalus means. It means too much fluid around the brain. I also know that it can cause brain damage and even death if left untreated. I know that most people with hydrocephalus have to get a shunt implanted into their skull/brain to drain the excess fluid and that the shunt will most likely have to be replaced many times over their lifetime. What I don't know is how severe or mild her case is. I'm most aggravated that nobody will tell me. Her Geneticist was out of the office on Friday. I called crying and talked to her nurse. She informed me that she would try to have another doctor read the report and call me back. Well, at 5:30pm she calls me to say that she has been unable to get a doctor to read the report and I'd have to wait until Monday. She informed me that she would fax the report to Whit's Neurologist, but again, it would be Monday before they'd be back in the office. All of these doctors are in the Ft. Worth/Cook Children's area, so I couldn't just run up there and demand to see them.

In the meantime (around 11:30 and right before they closed) I took the report and disc to Whit's Pediatrician in hopes that he would take a look and alleviate some of my fears. However, he was unable to offer much as far as how serious her case was. He assured me that it was not an emergency situation and sent me home to wait some more. You can understand my frustration...finding out my daughter has Hydrocephalus and not being able to get any answers as to what else could be causing it. I don't even want to speculate at this point. The report states, "idiopathic stomal hydrocephalus." I know that idiopathic means of unknown origin. So, what's causing the excessive fluid? And is this related to the opisthotomus episodes she's having more frequently and the eye swelling that won't go away? I would think so. Is she going to have to have a surgery on her brain? That scares me the most.

So, here we sit...waiting and waiting for someone to tell us what to do. Drain the fluid and see what happens? Is surgery on our horizon? How long does she have before the brain damage part sets in? What other tests does she need? MRI under sedation? Should she be restricted from certain activities? What about flying to California next week? Does the pressure in the airplane cause more pressure in her skull? Is she having headaches? And WHAT is causing it?

Will Monday ever get here? And why doesn't the rest of the world come to a standstill when my life has? We will continue to pray and pray some more. Please understand that I am still in a stage of confusion and fear, so this may sound as though I'm a nervous wreck (which I am). However, I typically come to grips with what is happening pretty quickly. Hopefully after talking to the doctors I will be in a better state to deal with all of this. Right now the focus is on watching Whit and giving her more love than ever before. We are also trying to focus on keeping things as normal as possible for the boys' sake. There's no time for me to cry or worry...