Wednesday, February 20, 2008

Slow and steady wins the race..........

Our little man had an average night. He got pretty ticked off a few times but he also knocked it down a notch and enjoyed some decent sleep. He has just received a handful of morning meds so hopefully he will forget his dislike for routine oral care and take a nap.

9 comments:

Meghan said...

i'm glad he is taking it easy this morning... but i do take issue with the phrase "sleeping like a baby". who's baby? and what baby really sleeps that well. i have good babies, and they still don't sleep well enough to warrent that phrase. i think it should be more like "sleeping like an old man"

good luck back at work today rob. try and keep your mind on the RR.

Anonymous said...

Sounds like Charlie is a night owl now little stinker! But it also sounds like he is doing a lot better which is really great. You guys are doing good at rolling with the punches too. I truly admire you!!

Sorry you have to go back to work Rob. It is hard when the world keeps moving around you and you have to jump back out in to it.

Just keep keepin' on!!

Megan said...

Hey, Alyvia never did had a G tube, she an NJ and NG tube, but she was able to swallow after we left the PICU. (In fact that was the ONLY thing the kid could do was eat...she still couldn't see or talk or walk...needless to say she gained 15 lbs in the NTU!!) A lof of our little PICU buddies have G tubes though, and I really don't think they are too bad, they seem less messy even. With the NG/NJ tube Livie pulled it out a few times...which was not fun. Can a G tube be pulled out? One of our little buddies was 8 and he acutally fed himself through his G tube. I hope it goes well. Sorry I don't know more about it.

We think of Charlie often, he has come a long ways, I know he still has a long ways to go, but man, he is a fighter!!

Megan said...

Oh, I forgot to tell you, that's probably a smart idea to do a J tube or GJ tube. We looked into the Nissen thing and it just didn't seem like too great of an idea.
Livie was in the PICU over 40 days and that whole time she was not able to protect her airway, she din't have a cough or gag reflex either...so we were prepared to trach her. (the Dr's were really worried about her aspirating again, so they got ready to put a trach in)....that same day Livie just started coughing. (it was really weak, but there) So I really hope that Charlie will suddenly decide to cough as well.
Livie also always had her mouth clenched. (She always had to have those dumb mouth guard protectors in)
I really hope that Charlie's brain just needs to heal a little more and then he'll be able to gag. I know everyone is different, but Alyvia did a lot better once her CSF was drained and not putting so much pressure on her brain, it was slow progress, but none the less, progress.

Sorry my messages are NOVELS!!!

troy said...

Question: Is there a paypal account set up yet?

Roxey said...

I also want to say good luck at work Rob! Hang in there, and we look forward to hearing from you afterward! Keep fighting Charlie--maybe we can come up with something that makes you want to gag, I can think of a few.....
Love and prayers

Meghan said...

troy, there is a paypal, i just havent had time to get it on the blog. i will get it on today sometime.

also thanks megan for sharing alyvia's experience with all of us. it helps to know char isn't alone in this..

Anonymous said...

Meg, I'll be gone this afternoon until around 4, then gone again at 5. If I miss you, I'll call you when I get home tonight and we'll get the paypal link set up. Talk to you soon!

Roxey said...

How did the physical therapy go? What did they work on? Was he just crying after? I don't blame him!!