So, it has been a while since I posted… so here we go!

As I mentioned, PenDell had a pretty good weekend. Monday he was very lethargic and found it hard to respond. They had planned a lumbar puncture that day as well and that happened.

Tuesday and Wednesday he got progressively worse. I was getting more and more concerned. The doctors were showing signs of concern as well. No signs of a diagnosis and his clinical symptoms were worsening. They decided to do another MRI. They told me that if the MRI results were the same as they had been or worse, the next step would be a brain biopsy which sounded pretty scary to me.

So, this morning, he had the MRI. The doctor spoke with me and showed me the MRI… it was worse. So, the neurosurgeon was scheduled to come and speak with me about the biopsy.

However, within about an hour all 3 of the docs from his team – attending, infectious disease and neurology – showed up at the door and called me out into the hallway. They told me that they had changed their minds about the biopsy because we had gotten some test results back with a positive finding.

PenDell has West Nile virus. He has been tested for that at least three times before this but it has always come back negative. The doctors let me know that this is pretty typical of West Nile that it has to be in the body for a while before they get a positive test result on it. The virus has presented in PenDell in a more aggressive way than some that they have seen.

So, upon hearing this diagnosis and the prognosis, I realized that I had been holding for this to just be something that would clear up and the devastation that has gone on in his brain would be over and we would create our lives from there. When I heard what the doctors had to say, I was shattered. I had to acknowledge that there has very likely been brain damage over the last five weeks.

I sat with PenDell, who has not been very engaged or connected today, and I told him what had been found. He took a deep breath, looked me in the eye, and nodded his head as if to express that he understood what he needs to do now.

He has become more connected and lucid as the night has gone on…

Our new journey begins… ❤️️