Monday, April 6, 2015

Our hospital visit just got a little longer

Quick recap:
Will went to the ER on Saturday afternoon and were admitted. Did the "fast/awake MRI" which resulted in a few usable scans and also in a diagnosis of yet another extremely rare brain disease, a viral illness in the cerebellum. It causes ataxia, slurred speech, weird eye and head movement, lethargy among many other issues.

On Sunday, we pretty much hung around.

On Monday, he had a spinal tap (lumbar puncture) and MRI under general anesthesia. Will's mito neurologist, Dr. Koenig, ordered the spinal tap to make sure there was nothing else going on that we couldn't see. She added in the MRI for good measure since the first one wasn't great.

Monday, late afternoon, Dr. Koenig and the neuro team came by. The MRI and initial spinal tap findings further confirmed the original diagnosis. Additionally, it 100 percent confirmed there are NO ADDITIONAL LESIONS!!!!!!

I would like to repeat that part. Will's brain shows no additional lesions and in fact, the entire area (except the cerebellum) looks good, or at least good for someone who has Leigh syndrome. This brought us to nearly uncontrollable tears of joy.

Dr. Koenig said, you guys have really hit the lottery on rare diseases. This cerebellitis isn't something specific to Leigh syndrome or mitochondrial disease. She said it's not unheard of, but very rare.

The only sort of solution  is to administer a steroid to help reduce the massive inflammation of the cerebellum. The pros are it should help reduce inflammation which should help reduce the symptoms Will is presenting. The cons are it might make him aggressive, hallucinate, increased appetite.

Frankly, if he gets aggressive and starts eating I would be happy. His original symptoms have not gone away and there is hardly any improvement. Today's anesthesia didn't help with the lethargy or slurred speech. Since his 10 bites of mac and cheese on Sunday night's dinner, he only has eaten some applesauce.

Here's the kicker... the steroid is administered for five days via IV. We will not be leaving the fabulous accommodations at Children's Memorial Herrman until Friday (assuming all goes well). He received his first dose tonight.

So, Neil and I will be trading off night duty and hopefully we'll see some improvements in symptoms.

We really have no idea what to expect. We've been told that this will take weeks for Will to recover from, possibly months. We are working to get speech and PT services at home increased so we can work hard to get back to baseline.

Right now, we are focusing on getting Will to a better place and keeping Quinn happy.

At this point, all we can do is be patient, pray and love on Will and Quinn.

So many people have offered to bring food, babysit etc. THANK YOU. Neil came home last night to a few bags full of prepared foods, some special Easter treats, some wine and flowers. THANK YOU.

At this point, I think we're set for the rest of the week. I can promise you I will be calling favors in and asking for help as well as dinner drops. Just did that tonight - I made a Target run after Quinn went to bed and a friend watched her. I ask for patience on responding to these offers, not because we don't want or need them, but because we really have no idea what tomorrow will hold. We need to get a grip on that.

We are being pretty cautious with visitors at this point. Will is currently on isolation which means any nurse/doctor who comes in has to wear a face mask and blue gowns. It's pretty intimidating. If you would like to visit, send something special or support Will please let me know and we'll work on making arrangements. Please understand if we decline a visit. I think he's totally overwhelmed right now and we don't want to add to it.

He does love watching video messages, so feel free to text those over. He's watched a couple quite a few times. He got a very special message from his school friends. I should add that the entire school has been incredibly supportive, reaching out with truly amazing kindness.

I promise you, he's going to be home soon and bored stiff since he won't be able to go back to school, likely for weeks. We'd love to plan some low key stuff with friends in the coming weeks. I will share when we're ready for that!

Many of you know our little guy to be an easy going, make you laugh and laugh out loud kind of guy. That's not what we are seeing at all right now. He often times stares off into space, can't form his thoughts/words and is sensitive. He's struggling to walk without a lot of support. Things that usually make him happy aren't really working, except perhaps, cracking confetti eggs on his dad and Papa. This is what I'm praying will change first.

I want Will back.

I will post updates as I can during the week. Thank you again for the outpouring of love and support for Will and our entire family.


  1. Praying for you and Will!!!! And your whole family. Hang in there, Lori.

  2. So glad to hear it's not related to Leigh's but poor little guy to get something else rare! I will be praying for all of yall and I hope his symptoms start fading soon! Love yall!!!

  3. Sending you lots of love and prayers to get Will home and well. Ongele