Thursday, May 31, 2007

hmmm...what is going on max?

Max has been very confusing the past few days.

He definitely has not recovered well from his "bug" and we finally did have to resort to Prednisone last night. As of this weekend we had decided to hold off on the steroids, but now it's time. He is having labored, tight breathing and having a difficult time keeping his sats where they should be. Seems like we have been living on antiobiotics and steroids for the past three months and cold/flu season is supposed to be over! (But so is our isolation which could be the issue.)

But even before the steroids (which makes him a bit manic), he was acting pretty random. You would think you would be tired if you are getting up at 3 am (I know I am!) and not taking any naps....but nope, not Mighty Max. He will be super hyper one hour and then the next, he will look pretty crappy and sick.

This morning he was very inconsolable until I offered him his walker. We took it to the park and that provided a welcome interruption in his crankiness. :) Yay for Max's determination!

So anyway, we'll see how today goes. I am hoping the prednisone kicks in quickly because it has been a week of round the clock breathing treatments and little sleep. Hmmm...

* Beyond the short term issues, a concern of mine when Max displays these odd sleeping patterns is the long term possibilities. Many people with CHARGE have severe sleeping issues and require many medications. I am hoping this isn't going to be the case with Maxwell. I know it's minor compared to other issues, but it certainly impacts our quality of life. Sleep is pretty important to living a happy, healthy life...for both child and parent!

7 comments:

Eva Nichole said...

Poor Max I hope the new meds help and he is better soon. I know a lot of our CHARGErs have been sick in someway and I hope everyone is better soon and we can have a happy healthy conference in July.
Hugs,
Crystal and Eva

Linden said...

Sending you lots of hugs and prayers. It's no fun being sick!
Love,
Rebecca
Cameron and Nathan's mom

Leslie, Arlin & Katie Kauffman said...

I hope this is just a temporary phase for Max and that his sleep patterns get back to normal soon. Katie has always had major sleep issues. I'm not sure what we would have done if she hadn't been put on a sleep med a year and a half ago. I don't really like the idea of permanent medication for sleep, but it was a lifesaver for all of us! And even with it, her sleep schedule still varies every day. It's definitely no fun, but I guess over the years we've learned to live with it. I envy those people whose kids sleep 12 hours every night!

Mike, Amy & Ben Russo said...

Max, you sure keep your mommie guessing. Hopefully these meds will do the trick. Who knew May would be such a sickly for all these CHARGE kiddos.

Becky said...

Hello Max and family,
I am a friend of Caleb Hlebizcki's family. I have followed your stories ever since Caleb's mom put your links on his site. God Bless Max and family!! You will be forever in my prayers. Hope he feels better soon.
Becky DiAngelo

ellen charge said...

feel better soon pls max im confusing to my drs cant figure otu y the hips r wrose than the rest hmmmmmmmmm

Melodie Langstraat said...

Hi Max!! My boys and I saw you at PT a couple weeks ago and we wanted to say HI! You are so cute! I love the picture of you in your walker! We hope that you AND mommy get lots of sleep tonight:) (I saw your site in the parent2parent newsletter)
The Langstraat family
www.caringbridge.org/visit/taysen