Sunday, April 5, 2015

In the hospital

Will was admitted to the hospital on Saturday afternoon.

On Monday Will had a terrible day at school and there was marginal improvement until Wednesday. On Thursday he had an EEG done and started on oxygen at night. On Friday, he was even worse. We thought surely he would wake up on Saturday refreshed and ready to go, not so much.

He was showing extreme ataxia - to the point where he couldn't barely walk from the couch to the bathroom without support... running into walls, falling, missing the couch, falling off the couch etc. He also was slurring his words, almost to the point where you couldn't tell what he was saying. His eyes and head were rolling around. He couldn't make eye contact and hold it for very long. He was disoriented at times and not making sense when he was talking. He had no appetite and so on....

All this is still the case, except his appetite is better and he isn't as disoriented.

Neil and I spent the latter part of the week, especially the past 24 hours, assuming that the lesions on his brain had progressed and that this was his new baseline. I was assuming this was the beginning of the end.

The neuro ER team consulted with Will's neurologist and they decided to try a "fast MRI" which means 5 - 10 minutes while Will is awake. ha. We've never done an MRI without general anesthesia. They sedated Will, and not even 10 seconds after the med went into his IV line, his eyes really started rolling back in his head. He immediately calmed.

They told me I could be in the MRI room with him. I can't even begin to describe how horrific the next 5 minutes were. If you've never had an MRI the noise is the level of a jackhammer but it sounds like someone is throwing knives and hammers at you with the occasionally whirling and bird chirping noises.

So they get Will's head all positioned and the tech says, "I'm going to try it with minimal padding." - I should have said, no, MAX it out dude. So we get started, Will is freaking out. I can barely hear him screaming, but I can see him screaming at the top of his lungs.

The tech comes back in . We have to start over, add more padding to keep his head from moving too much. The guy packs him in there and then adds a pillow and huge body strap to keep his arms from moving around.

Back in he goes, screaming and kicking his legs. I literally yell for five minutes that he's doing great and to lay still and how proud I am of him. I was at least able to rub his legs. At one point in time I started gently slapping his leg trying to get him to focus on something else. It worked for a minute then the meds kicked in every once in a while.

After it was over, everyone told me that none of the slides would be usable because he was moving too much. So that meant he would have to have a general anesthesia MRI. Regardless, we were not going to be allowed to go home.

We made it up to the PICU and got settled. It was dinner time and Will was thankfully saying he was hungry. We ate and dealt with the constant stream of people in and out and finally lights out around 8 p.m.

Neil and I pretty much have been in utter panic. He's been home with Quinn as well which is even worse when you are not there.

The neuro team rounded this morning a few times, but then came in to deliver the news. We found out that the 5 minutes of MRI hell actually resulted in usable slides. Enough to diagnose Will with cerebellitis. Essentially it's a viarl infection of the cerrebullum in his brain. It's rare of course.

There is not treatment for it, but he is expected to make a full (long) recovery. It could take weeks till his body is back to baseline.

Neil and I both started crying in joy that this wasn't the disease progression. In fact, the crappy MRI doesn't show any new lesions!!! That is incredibly amazing news for us.

I'm sure the neurologists thought we were nuts to be so excited for a viral brain infection, but this appears to be fixable!

Dr. Koenig ordered a lumbar puncture for tomorrow to make sure that there is nothing else going on. They also are testing him for a variety of random illnesses.

So it's looking like one, possibly two more nights in the hospital.

Neil and I swapped places and kids. Quinn and I will be going back up to the hospital for an Easter Egg hunt in Will's room. He might be totally out of it, but he is determined to get a visit from the Easter bunny.

Please pray that tomorrow goes well. Will is going to be put under and that is always a very very scary thing for us.

Please pray that this really is fixable and that his recovery is quick.

But most of all please pray that he gets back to baseline and that after the cerebellitis clears that he goes back to being our little Will.


  1. Prayers for your family, especially Will, Lori!!! I'm so glad that there are no new lesions visible, and that it turned out to be something that can be dealt with. Hugs to you. Lisa

  2. I just read your post, and am thinking my best thoughts for Will and you both. Please keep us posted. Max

  3. Praying for Will and your family, Thank you for keeping us posted.

  4. Prayers and positive thoughts from San Antonio:-)

  5. Prayers for Will and the entire Martin family.

  6. Oh Lori, I was panicking right along with y'all reading this gutwrenching post. I hate mito so much. I hate that a viral brain infection is GOOD news. Damn it. I've had an MRI and your description was spot on. Its terrifying. Will is such a trooper. Sending all my best wishes your way. Big hugs!