I have never felt so alone or scared in my life. I finally found my way to the ICU of the new hospital- no one was there to greet me. The doctors were going to do a spinal tap.
I was surprised they did it bedside so I was there for the whole thing. They have to puncture into the lining of the spinal cord and draw out cerebrospinal fluid. There is a glass tube used to measure the pressure. Jake didn’t flinch. He probably had 10 -12 of these procedures before it was all said and done. What I didn’t realize until much later was that Jake’s pressure was always exceeding the tube’s ability to measure. 13 to 18 was normal; most cases of meningitis would go to around 30, but Jake’s was beyond 50- the highest reading. Sometimes they would drain off what they thought was enough, and it would still read too high. They started culturing his blood to try to isolate the culprit. There were several teams of doctors who would come visit each day, but most wouldn’t say much. The waiting and lack of knowledge was really frustrating. Eventually the blood tests started coming back. ..negative. They reluctantly decided to start him on an antifungal. I started to panic more because the negative tests were discouraging, and with the “help” of Google, I knew a fungal infection was more likely to be lethal. The antifungal medication is pretty harsh so it was a difficult decision. As more time passed, they decided to do a lavage and bronchial scope of his lungs. I kept repeating his history and symptoms and it kept going back to his lungs. The neurologist suggested sarcoidosis as an explanation to the gunk in his lungs and negative cultures for infection. After the lavage, the doctor came out and told us, “I think I have identified the bacteria,” Is it treatable? “Very…”