Written Tuesday 2:37 p.m.:
Bottom line: Max has meningoencephalitis and as of now we don’t know the underlying cause, except that it was likely a virus. We know a lot of what it is not. He was tested for many, many things. May have been insect borne but may not have. There were no areas of concern on his skin, just signs that pointed the doctors to suspecting an infection was present. Some of the tests (like West Nile and others) are still pending.
The important thing is, he is getting better!!
Edited to add at 3:39 pm: We just found out that Max can go home today! Also, most of the tests are back now and they are normal.
Sunday held a lot of special moments during the day, as friends came to visit and lifted our spirits. Max was smiling and laughing as he laid in bed still hooked up to IV meds (an anti-viral) and saline. Mini also came with Brad, Lauren, and the girls (whom she has been staying with). So wonderful to see her and to scoop her up in my arms for a while. We got a family picture that I will always cherish.
Livi and the kids in Sunday School made a special card for Max. We all thought this was so perfect!
The visits were so upbeat and Max was funny and witty, making us laugh with his commentary. As he seemed to be tuckered out, though, our friends left and we had a couple of quiet hours with just the three of us in the room. Well, as quiet as possible in a hospital. The door opens so often as nurses, techs, and doctors enter to check on him. It’s a steady stream of activity.
As far as symptoms from the infection went, Max was getting better and better. But every now and then he would say something that led us to believe he was seeing funny things. Like his brain was playing tricks on him and making things suddenly appear and vanish or change right before his eyes. It actually started the night before when he asked me why horses were outside our room. But he thought his imagination was going wild so he kinda laughed about it. We assured him that when his brain is sick, weird stuff happens. He wasn’t too freaked out and neither were we.
But then on Sunday night, he started to see more things that were off the wall. Like, literally off the wall. Suddenly the bed he was lying on was upright and the wall was sideways and the ceiling was where the floor was. He asked why we suddenly had wood flooring and asked why things were rearranged in our living room, pointing to the corner and asking why on earth our purple exercise ball was there.
It was getting weirder, but at least the strange visions were pleasant and Max seemed to have a sense of knowing they were bizarre. We weren’t too concerned; in fact Mike went home to sleep and check on our house, which had been without power since the storms on Friday night. I got ready to sleep on the couch for the night in his hospital room.
But then, about fifteen minutes after Mike was home, I had to call him to come back. Max was having more hallucinations, growing in frequency and intensity. I asked Max permission to share about this, but I don’t even want to write down what they were about. That’s his story to tell one day if he chooses to do so. But let me tell you, it was extremely unsettling for us both and it frightened him very much.
The neurologist resident came by to check on him and we talked about the hallucinations. She examined him while he was having his “weird feeling,” as he called it, and saw exactly what was going on. She called her team and told us that this is something not too uncommon when there is infection in the brain, and to stay by his side to comfort him.
In between episodes, as they were worsening in so many ways, Max asked me to hold him in his bed and tell him Bible verses. One verse after another came to mind, filling me with the strength to speak my next word. When he talked to Mike on the phone he listened to him tell the story of David and Goliath, the version he’s always loved to hear him tell, and Mike prayed out loud while driving on the beltway. All the while, desperately trying to keep a tone of voice to assure him that “Daddy’s here, everything will be all right.”
While they were on the phone, with my heart racing, I opened my laptop trying as best as I could to calmly go through the multi-step process of connecting to the internet and opening Facebook. I messaged our pastor and asked him to start praying.
Once Mike arrived at the hospital, Max had peacefully fallen asleep. He slept through the night (in fact, amazingly all three of us did. Mike took the couch and the nurse rolled in a recliner for me.)
I woke up around 6 a.m. and quietly walked over to the bathroom and sat down on the cold floor to update our status on Facebook. Mike and I already decided to ask people to specifically pray for these hallucinations to stop.
And by God’s mercy, he has not had one since.