H was first admitted to the hospital one month ago today. And now we are heading back to the same hospital to begin again.
Today H will be transferred back to the acute-care, higher level hospital where he spent the first two weeks after his injury. For the past two weeks he’s been at another hospital’s in-house neuro rehab program, but to be honest, he hasn’t made much progress and in fact, his condition has deteriorated over time. Then, in the past 48 hours, he had a significant seizure episode and has become rapidly less aware or able to communicate or follow simple instructions. A new CT Scan yesterday (which I had to insist on being done) revealed increased edema in the frontal lobes. He is also in significant pain from a bad headache, a new development.
Yesterday afternoon, I headed over to the hospital after work. While H was asleep and I was perched next to his bed, I wrote a blog post about the negative changes we were seeing in his overall condition. Then I spent some time on the phone with his doctor, talking about the changes. His doctor admitted that he was very concerned, but said he wasn’t quite sure what needed to happen next. He said he would consult with a neurologist in the next day or two to consider our options. I hung up feeling worried. My gut told me that H needed to receive more focused care immediately. I just knew that something was changing with him, that something was very wrong.
After I wrote the blog post in the late afternoon, I posted a link to it on my Facebook page. A neighbor of mine, who is my friend on Facebook, saw the post and became concerned when she read about how H’s condition was worsening. She asked her husband, Dr. R. a well-respected neurologist in town who hasn’t been treating H, to take a look at what I had written, which he did. Dr. R. was concerned enough by what he read in my blog post that he called another mutual friend/neighbor of ours (he didn’t have my number) to ask her to get in touch with me. So she called me and explained that Dr. R had read my blog post and was worried about H. She gave me his number and asked me to call him.
To make a long story short, I called Dr. R. He quickly came from his house right over to the hospital, which happens to be located in our mutual neighborhood. He examined H and gave me his opinion that H currently needs a higher level of care than the rehab center provides; his condition has deteriorated since he was moved from hospital #1. Dr. R. was concerned about the seizure, H’s continuing “mini seizures,” the edema on the brain and other issues we’re seeing. After spending some time examining H, Dr. R. called H’s doctor, whom he knows, and within an hour it was decided that H would be transferred today back to the acute neurology unit at the higher-level hospital where Dr. R is on staff. Dr. R is admitting him, and his group will be treating him. H is having an MRI today to find out more about the source of the edema and the seizure activity, and H’s doctor agreed with Dr. R’s recommendation that he be started on depakote, an anti-seizure med. He had his first dose last night.
After Dr. R. left, H’s nurse came in to his room, shut the door and told me quietly that she was SO GLAD that Dr. R. had gotten involved because she had been very worried about H. She said several of the nurses had been talking about how H needed to sent back to the acute-care hospital where neurologists would be overseeing his care.
“You did the right thing getting Dr. R over here. He’s the best.,” she said to me. “You’re a good mom.”
I really appreciated her saying that because as a mom, I feel so incredibly helpless in this situation most of the time.
Today I am feeling pretty indebted to Dr. R and his wife. And also pretty grateful for community – both virtual and real. You hear a lot of horror stories about social media, but not enough about stories like this one.
