steady decline

all he does is sleep

Thursday brought more questions than answers! However, by the middle of the day my concern with what was going on with my son wasn't relaxing. JD was having issues. He began losing the ability to swallow his own saliva. At first we thought it was just due to excessive drainage from the sinus infection that was noted at the ER on day one. However the drainage had stopped, but he still couldn't handle it.

We had begun using the wall suction during the night to help with the drainage and clear his airways. It was set so that I could suction him out when it seemed like he was having difficulties. Slowly we noticed the difficulties increasing. So I spent a lot of time helping him do it. However, by the middle of the afternoon, he had learned to handle it himself. I stood by, and watched him carefully but purposefully do it himself!

It was around this point that the doctors were making rounds. The group of students, doctors, and nurses were in. While they talked, I stood next to JD trying to help him, and answer questions. At one point something was asked about the need to use suction over the night, and I was paying attention to the doctors and not fully looking at JD.

I watched the head doctor watch JD closely. Her words after were some I can still hear resounding in my head.

"Let's get speech in to listen to him to make sure he is swallowing ok. Because at no point should a 5 year old know how to do that themselves! Or need to learn!"

Oh, you don't say!! I've only been bringing these things to your attention for a few days. But I'm just mom. I wanted to shout it at her! But where would that get me. No where.

Finally it was brought up that we still had no new results. Nothing was clear and we didn't know what was going on. All his tests were in, and everything, EVERYTHING, was negative!!! So what we knew was what it wasn't. It wasn't Lyme's. He tested Negative for the enterovirus-68 that everyone was concerned with. (He actually tested negative for all enteroviruses.) All major viruses were tested and everything came back negative. So it wasn't even some of the more obscure, including polio.

My heart was sinking. Something was making my son very VERY sick, and no one could figure it out. Not only that, he was steadily declining!! He was still exceptionally weak and tired. But he was also slowly losing the ability to control his body. First it was just holding weight, then it was holding his head up, and now we could see him losing the ability to swallow! His bed had to stay basically at a flat position, or he screamed in pain. When we tried to make him handle it, his body just slowly flopped to the sides, so he ended up in a very awkward position anyway. A position in which he couldn't correct himself from. So it became clear it was easier to let him keep his bed flat.

Doctor Nora addressed her concerns at what she witnessed the night before. It was asked if it could be pain related, as they originally thought. I had to step in!

"Listen. When you are in pain, or something hurts. You do everything in your power to keep that body part still. You become rigid and non-moving. JD is not doing that. Instead, he is not able to control the movement at all. His head just falls back and forth. He's floppy. Not rigid. IT IS NOT PAIN!!"

Doctor Nora agreed! And SHE advised we get Neurology involved. FINALLY!! Finally someone was listening. And it was set that they would call the team in. They didn't know when they would be around, either later that day, or the next. But they would call the team! They also would get speech around to figure out what was going on with JD and his swallow.

When the doctors left, I finally sat down. Finally feeling like we are getting somewhere. No we don't have answers. But finally they were listening to me. I had great hopes that Neurology could find something!

This whole time, JD was still in full isolation and for precautions. So the only people (other than his grandmother, dad, daddy and paternal grandparents) he had contact with were people coming in wearing yellow gowns, covers and masks. His brother and sister missed him terribly, along with their mom who had taken to living at their brother's bed. But it became obvious to JD who the doctors were. He would see them coming and just do their tests, mainly with his eyes closed.

When the nurses came in that afternoon, he saw the yellow and quickly shut his eyes tight. When asked to do something he pretended to sleep. I knew he was awake and kind of chuckled. There was my boy. He was in there! He knew he couldn't physically get out of the situation, but what he could do was manipulate it to suit him. And at that moment, he had no desire to do the Neuro check.

Finally that evening someone from Neurology came in. It was a small team of three. They did the general neuro checks that everyone else had been doing. The lead doctor sat on the bed next to JD watching it all. I had so many questions. I had spent those very lonely hours of the night looking up things online. I had found some different potential ideas. But I waited. I didn't want to bring them up. I wanted to know they were on this first. I'll be honest, I started looking at the possibility of a late onset of CP, MS and I found some newer ideas. ADEM or a newer syndrome called Acute Flaccid Paralysis. But I sat and waited.

The doctors talked and said they wanted to spend more time with his chart and would talk to me in the morning. They answered what few questions I had. The big being, do you see this being neurological in nature. And the resounding answer was, YES! What they couldn't answer is what it could or couldn't be, and if they should have gotten involved sooner.

But we were going in the right direction. Right?