Wednesday, July 15, 2009

Neurology appointment

I am posting some pics I came across when going through stuff. It was before I had a digital camera. This is Jax after he'd been intubated for 2 months. Sedation meds no longer worked for him. It was about 8 days before his devastating brain injury. Notice he still has the same hairdo.

Neurology appointment didn't go too bad. He is upping 2 of the 3 siezure meds to see if that helps at all. We talked about how we will find a new med that will help the siezures for a few months, and then they start to get worse and worse again. I just hope we can control them before he goes into status again. Some doctors look at his EEG and think he's in status. Because his EEG shows constant siezure activity. But you have to look closely at the lines to see true siezures and abnormal activity. Plus you can tell by looking at him because he is in neverland when he's in status. Staring off into space. So we'll hope this increase works. If not, they can admit him and try high doses of meds like valium, that has been shown to work sometimes. But I'm not doing anything that requires inpatient right now. We've had 4 admits this year so far, and thats enough.

Tomorrow, I get Jax new stroller, wahoo.
Have you ever seen someone so excited over a stroller?
Stay tuned for pics of him in his new ride tomorrow night.



18 comments:

stephanie said...

at least the visit wasn't a waste. There was some input by the doc.
I can't wait to see Jax in his stroller. That's so cool, will make things easier for you.

Dawn said...

Woo Hoo Jax's getting wheels. Go Jax! Go Jax!

Kim said...

Hooray for the new stroller! Can't wait to see him in it. Praying the docs can find the right meds for what's best for Jax.

Alyson said...

HOORAY for the new stroller!!!!!........Jax's new "pimped out" ride......he he he

That hair do really works well for him :0)

I pray that Jax will never have to go down the valium and in patient route........That's tough......On EVERYONE........

Any more vacations planned for this summer??

Phoenix's Mom said...

Yeah for the new stroller! Can't wait to see pics of our cute little man in his ride!
Praying for meds to work, and no inpatient stay!
Hugs!!!

Stephanie said...

Oh I so hope this works for him. He deserves some peace, so do you darlin'.
You'll be in my prayers as always.
I can't wait to see Jax in his new diggs.

Kele said...

I sure hope the meds work, I will be praying the do!
Love the stroller, I look forward to seeing pics of him in it, he is cuter than the teddy bear!

Ria said...

A brave fighter deserves only the best! Looking forward to seeing him in his new ride.

Anderson Family said...

Can't wait for tomorrow's pictures of the new wheels. It sounds like you at least made a little progress with neurology - now you just need to hear from Boston. Seriously what is taking so long????

You should let us know if you are going to the pool sometime - we could maybe meet you over there. I still need to get my kids over there (besides swimming lessons).

Give Jaxson a big hug!
Kristi and Carter

Cammie Heflin said...

That will be so awesome! When Addy was on O2 and continuous feeds that would have been a lifesaver! I'm so glad you are getting it!

Becky said...

ugh...i'm sorry. seizures are such a pain to manage. i hope that you can find some relief for him soon.

Michelle said...

Oh those seizures...they are terrifying and horrible! So sorry! I cannot wait to see his new stroller, how very exciting!

Ruby's Mom said...

Can't wait to see Jax's new ride!!!!!!
Jax is always in my prayers.I hope the right meds will be found soon.

Emily said...

praying that those meds will work! Can't wait to see his new ride!

The VW's said...

What a sweet picture of little Jax!

I'm glad the appointment went better than expected...I pray that the med increase helps with his seizure activity! I hate seizures! I think that Gavin is starting to have them again! UGH!

Can't wait to see Jax in his new stroller!

LOVE and HUGS!!!

CFMama said...

Can't wait to see Jax and his new wheels, very very exciting. Praying for good medical news...NO INPATIENT stay!!!

sturpin said...

I'm excited that the visit was not a waste of time. I'll looking forward to seeing Jax in his new ride! ;)

My Three Sons said...

I hope that the new medicine works and keeps him seizure free.