Monday, December 01, 2008

En Garde!

I apologize for not updating sooner but we are having some DSL issues at the moment. The good news is we are home. The scary news is we are home.

Ben is not acting “normal” and really hasn’t been since we left the PICU. He’s very, very lethargic – almost comatose. There have been two episodes where he’s stopped breathing. The one that occurred early this morning lasted just a few seconds and he was able to correct on his own. The one that happened yesterday afternoon lasted about a minute and took about 15 seconds of bagging to get him to breath again. Neither one seemed to be triggered by a seizure.

We have two theories. He might be completely exhausted from the weekend and just needs the rest. The increased the dosage of his Kepra can cause lethargy until Ben’s system gets used to it. Of course it could be a combination of both or something else we really don’t want to think about at the moment. Whatever the reason we just know he’s not out of the woods yet.

Poor Jessie really didn’t want to go back to school this morning. I know she felt like she didn’t have much of a holiday break. That’s just another part of the painful side of having a special sibling. Their brothers and sisters lose so much of their youthful innocence. They learn how unfair life really is at an age too young. I just wish we could do something special for the best big sister in the world.

That’s all I got right now. As Vickie and I were lamenting just a few minutes ago, we’re not exactly back to square one but we’ve returned to "en garde living." Ambu bags are back in rooms that haven’t had one in years. Joan has meticulously updated Ben’s historical data. She’s printed out numerous copies to distribute to doctors, nurses, specialists, or anyone else that might need the information should we have to leave again in a moment’s notice. Over the next few days we’ll be brushing up on our CPR skills.

I wouldn’t say we had become lazy but we certainly were more relaxed as a family when we started our day Friday morning.

11 comments:

Maggie, Dammit said...

I can't tell you how much I appreciate you taking the time to update. Hang in there sounds so trite, but.... well. Hang in there, k?

Immoral Matriarch said...

You're all *still* in my thoughts. Thank you for taking the time to update us!

Carmi said...

Jessie will someday look back and what you wrote and realize what incredible, incredible people you are.

I'm still praying, hoping your gut instinct is on the money about his apparent fatigue. You're heroes on so many levels, y'know.

Corina said...

You are still in my thoughts. Thank you so much for updating during this critical time. You have been popping in and out of my head for the past few days. You are incredible and you all will get through this stronger.

Christina said...

Your son is in my thoughts, he is truely a fighter and a strong one at that.

I hope that home is where he gets to be surrounded with his family and all the love.

Kyla said...

I hope the wee lad is just wiped out from all this excitement and you'll get back to something a little more like "normal" soon!

sheepincognito said...

Sooo glad to hear that you are all back home together - hopefully a peaceful, restful and uneventful day for Ben and the bag (really, they should not be hanging out together...they aren't meant for eachother :o) )

Give Jessie a hug from all of us here - we missed all of you this weekend in Greensboro. There was a whole gaggle of gals running around all weekend long...Jessie would have spice that gaggle up quite a bit, methinks.
Give Ben-Boy a kiss on the nose from me.

Gretchen said...

Maddy is wanting Jessie to come up for a visit...I bet Jess is too much a homebody to do it, but send her our way if she wants to come. We have snow!!

Go Ben--keep fighting.

Love to all.
P.S. Got my cards--thanks!

Rubenesque Writer said...

Haven't been on the computer in a few days and I come back to this! I'm so sorry this is happening, Bennie. My thoughts are with you and your family right now. Keep fighting, Ben! You've got an entire internet of people pulling for you!

Slick said...

The little man is in my thoughts, Bennie...

As the you are, and the rest of your family.

we_be_toys said...

Oh Bennie! So glad you did update us - I've been thinking of ya'll a lot. Glad to hear you're all back at home!