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Monday, September 28, 2009

Adventures in Neurology

I'm not a big Rocky fan but I saw this shirt in Christian's size and the theme song immediately started playing in my head as I thought of Christian. He had to have it!

Do you ever have one of those days that is full of twists and turns? Do you ever have one of those days that is so full of information overload, if feels like you just got through a week instead of a day? Today was one of those day.
8AM: Christian had his OT appointment with our new favorite OT lady. This is therapy session #3. She said he made so much progress in just three sessions. I think he was showing off for her a little today. She also said something about flush redness around the head and neck and how that symbolizes vaso-something. This indicates there are messages being sent from the brain, whether they're "appropriate" message, we don't know, but things are on the move in that brain of his (I really sound intelligent explaining this, don't I?). She also showed me some cues she gives his body while moving him into different positions and he was taking those cues and moving accordingly. She made a point to tell me to tell his neurologist she's noticed decreased tone and increased active movement and relaxation in just his three appointments.


Speaking of neurology...here comes the sort of sucky part. Ever since Christian gained eye control and eye movement he's done something where his eyes will shake or bounce off to the right and his head will follow. It sort of looks like a cross between turning to look at someone and rolling his eyes. He even does it when I talk to him on his right side. He'll do the eye bouncing thing and then try to focus on me. The OT remarked that we may want to get that checked with neuro because it could be seizure activity. Boy, did that take the wind out of my sail. I was so hoping to skip the world of seizures. So I promptly got on the phone with the neuro center in Tucson and I was able to get in today at 1:20PM.

1:20PM - Welcome to my favorite place...the Center for Neurology. Ugh. This center is filled with all of the high spirited and optimistic neurologists we encountered while in our first days in the PICU. And if you read my blog, you'll know I'm being a tad sarcastic. And who is the quickest I can get an appointment with...Dr. G...also lovingly nicknamed by yours truly as Dr. Death. He was the one that asked us to think about whether we wanted to resuscitate Christian should his perfectly good heart fail. He was the one who delivered every possible worse case scenario there was. He is the one who has never been satisfied with Christian's progress. It's always been, "Well, he's doing this but he's not doing this," over and over again. But he is also the only one that could see us as soon as possible. Fine.

He looked at Christian and said, "Last time I saw you, you were in the hospital and you were very, very sick." Because I have to grasp at any comments from this guy that have a glimmer of positivity to them, I take this as positive. I know, I'm reaching. Long story short, he mentioned that he didn't believe what Christian was doing was seizure activity. But to make absolutely certain, we should run an EEG and he had room for us to do it today. Oh, but the techs can't tell me anything. The doctor has to read the results and get back to me when he has the time. Great. Harassment of Dr. G starts tomorrow at 0800 hours.

Dr. G also said he wanted to discuss Christian's tone and that maybe we aren't doing enough to combat this. Um, thanks but no thanks. If he wants to prescribe a higher dosage of meds or a different med, go right ahead. But I'm not giving it to Christian, not yet. Sorry. He's been on the same dosage since leaving the PICU and his tone has improved without adjustment to meds. There has been no where near enough time to even allow his brain and body to heal. There has been no where near enough therapy or oxygen treatments to begin doping Christian up. Talk to me in another 9-12 months. Then we can assess his meds.

2:00PM - Waited in the children's waiting room. I walked in and a lady recognized Christian and my big belly and said Christian's name out loud! Turns out she follows the blog. Small world!

2:30PM - EEG time. Christian was swaddled, very comfortably and lovingly, by a really sweet lady. And I'm not being sarcastic. She loved children and she hummed little songs the whole time. I literally felt my eyes get heavy listening to her. It was 30 minutes and I got no hints at anything...nothing. The closest I got was when she came in to hold his eyes shut. He was awake the whole time and I asked why she was trying to get him to close his eyes. She said because when we're awake with our eyes open there's plenty of brain activity, but when the eyes are closed, the brain goes into relaxation and they can pick up other things. So does this mean Christian was having a lot of brain activity? Am I reaching again? I have to! These people talk in code!
I fully expect for Dr. G to tell me the brain activity is abnormal again. Just because he doesn't really look at anything positive. So I'm only expecting to hear negative. And besides, if he had a normal EEG, he'd be "normal." I'm not setting myself up for disappointment. I do want to hear that it's NOT seizures. So I'm praying for that conversation.

Christian getting hooked up to EEG electrodes.

In the dark wondering what the heck is going on and why he has a towel on his head.

4:00PM - Finally home. But I left a message for the HBOT company checking in with them and letting them know we fully intend to start treatments as soon as we are done gathering the funds. But that they should hear back from us by October to begin treatments (fingers crossed!). I heard back from them and they said they can't wait to treat Christian. I said that I was a little over half way there for the total amount due ($5000). The manager said that was fine, he can take half now and half at the half way point (20 sessions). Know what that means?!?!?! He can start as soon as Monday in the hard chamber!!! If it is right, God will make a way and He has.

Dear God,
Please clear Christian's brain of any seizure activity. Please allow his little brain to heal without disruption or setback.
Thank you for this little miracle.
Amen.

8 comments:

Rochelle said...

Praise the Lord for the HBOT allowing half now and half later so that Christian can start treatments next week. This is awesome news and I know an answer to many prayers. I'm so happy to read this on your blog today! That other half of the funds will come. Just keep the faith!

I hope its not seizure activity, too. Sounds like it might not be from what you posted and we'll keep thinking positively on that note. If it is, that bridge too can be crossed. Just stay focused on the future and deal with whatever comes your way day by day. I know you can handle it whatever it may be!

Praying for Dr. G to be more compassionate in his bedside manner and care.

Loved the updates from the new therapist. Sounds like she's a keeper!

When Kina had her EEG they made her close her eyes for a long time, too. They actually did some crazy strobe lights and such, too. It was kinda weird. Like you said, the techs don't give you any idea of what they see. I hate that and wish I could read those machines.

Hang in there and keep us posted. We think of you every single day and are praying for Christian's progress, your strength and your family, too. Take good care of Mama (you) and baby sister, too.

Tara said...

so glad you can start the HBOT treatments ASAP!! Those funds will come!

Praying for NO seizures! You are awesome Shauna and I enjoy reading Christian's updates!

Praying for you everyday!

gavman306 said...

great news with the HBOT!! The funds will come...Love the Rocky shirt, Christian will be so cute in it!!
Praying for no seizures...
God Bless You!!

Chantilly said...

What a little fighter! I just want to grab Christian's face, squish those big cheeks and give him a smooch! :D

Yay on the HBOT treatments!!

sunflourchic said...

Love the Rocky shirt, it is SO him. So excited that the HBOT will take half now and half later. Hopefully we can get some more donations or other fundraisers going and help out. Big hugs!

Jendioguardi said...

AMEN!

Mrs. Heupel said...

In Jesus' name, AMEN!

Brooke said...

WOW.....the difference in Christian's facial expressions in those pictures is amazing!! You can tell he TOTALLY is like.....what the heck is going on ....in the dark picture!! I mean- isn't that something that MEANS something?? To me it means his little brain is differentiating between light and dark and trying to figure it out! GO CHRISTIAN!!!!

Love the Rocky shirt by the way!!

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