Friday, June 13, 2014

Summer 2013, Part 2

So June found me in the hospital, fighting unknown bacteria in my cerebrospinal fluid (CSR) at the same time I was septicemic from---not just one but---two different types of bacteria.

At the same time, I lost the left side of my body (neuromotor-wise) and found my vocal chords were becoming paralyzed. So in July, I was hospitalized for surgery to place a plastic piece in my throat to help me.

In August, we decided we had to take out my Omaya reservoir in order for the IV antibiotics I’d been on 24/7 since June to kill all the bacteria in my CSF. After waiting the requisite period of time, we went to do my interthecal treatment. The doctor pricked my reservoir with the needle and - all I heard was a sucking sound in my head. It was akin to being in a Sci Fi story. All that resulted was blood, not CSF.

So we went back to my neurosurgeon the next day. He tried to access my Omaya reservoir, and once again I heard a sound like someone was sucking my brains out. “It worked at the hospital.” Well, it clearly wasn’t working now! So it was back into surgery for the 4th consecutive month that summer.

This time, we got a better style of Omaya reservoir, one without any bend in the catheter tube. And finally, in Oct, we were able to resume treating me.

Although I’d missed out on the whole summer, we were blessed with beautiful warm weather, so I went to the beach - twice- in October. I even swam in the pool to see if I could keep my head above water. I did.

Typed by GSC

1 comment:

web5586 said...

I'm Alejandro's mother. He is 3 years old. His diagnossis is leptomeningeal carcinomatosis. I belive miracles exists and praying for him. How do you do? Send you all our hope and love