Monday Morning Update

I know it is confusing about what is going on with Micah. His diagnosis is still almost certainly ADEM. Overall, Micah is still losing cognitive response. He cannot communicate well, though we see him wanting to. It is as if he can't get his mouth to say what he is thinking, or he is having thoughts but can't interpret them. He did have a menu today for breakfast and read the words apple and milkshake. He didn't know if he wanted those or not (Micah hates apples and loves milkshakes). He cannot walk, sit up on his own or respond to most questions (although a request to know what time it is will almost always elicit a quick glance at the watch). He said he wanted to sit in my lap but when we got him up, he said it hurt and he vomited. He has no food whatsoever in his body so not much came up. We are trying to avoid a feeding tube but may have no choice. He is unable to swallow, so he is drooling. Our hope is that we will be able to start the steroids soon and he will be able to swallow and eat.

We have some of the brightest minds working on his case and they are still processing, researching, and making decisions. We have met with two doctors today and this is what we know: He is still testing negative for all the infectious diseases, but yes this still could be a bacterial meningitis. It is not likely, and the spinal fluid has a "viral flavor" but there is just no way to know. When we reach the 48 hour mark, and the tests are still negative we will begin steroids. Steroids are the first line treatment for ADEM but would be terrible if Micah was fighting a herpes virus. This is highly unlikely because no one has had any cold sores, but we have to be sure.
There is also no way to be able to tell if this is infectious or just post-infectious/inflammatory- hence the masks and gloves. The feeling is that it is post infectious, but we still probably shouldn't have visitors in our room. However, we are up here all day and a walk with a friend would be nice! Something that is different from our original thoughts of the MRI is that Micah does have a significant amount of inflammation along his entire spinal cord. There is also inflammation and swelling of the brain lining and along the brain stem. Basically, some kids pop right back after this and some have to have extensive therapy to learn to walk, talk, etc. There is absolutely no way to know and to be frank, I really could care less at this point. We just want our son to be healthy again. Micah's case is very rare. Our pediatrician said he spent a few hours reading up on it yesterday (so did Matt, so he can talk very candidly with the doctors which I appreciate immensely).
Everyone is asking how we are doing. I get my batteries charged every night as I sleep in my own bed and get to go home and be a mom to Owen for an hour at night, but Matt is growing increasingly weary. It is extremely hard to be up here alone with Micah as I learned yesterday. I will stay here all day and will encourage Matt to go out this afternoon. We are scared, sad, and tired, but also trying to remain positive and getting moments of peace when Micah asks a question about the mL in his IV or tells us what time it is! Some specific prayer requests: that Micah will be able to get some nourishment today in the form of protein and fat preferably not by feeding tube, that we will start the steroids soon and that they will have a positive effect, that Matt and I will keep our heads up and stay positive, that the doctors will make wise decisions regarding our son's care. Thank you all, faithful friends and family. We love you and will keep you posted as we are able.

The LORD is close to the brokenhearted, and saves those who are crushed in spirit.
-Psalm 34:18