Samuel News

Samuel is doing amazing!!! The last month has been full of ups... and even when we had a few downs (high temps), they didn't affect Samuel's progress. This is incredible! Just a few months ago something like a high temp would have sent Samuel over the edge... but now, he is stronger. He has always been a fighter, but maybe now his body is catching up with his will. Prayers are being answered! In fact, so many things have happened over the last month... it will be tough to remember them all. Lucky for you I guess, I'll keep it to the big stuff :)

Finally, a photo in my shirt!

Some of the best news we've had just came this past Monday... Samuel came off of the JET, the high frequency ventilator that delivered 320 tiny breaths per minute! Wow... I can't believe I'm saying it out loud... makes it real all over again :) In July, we weren't sure if he could ever come off the JET... much less go straight from that to CPap! That's right, CPap! No more ventilator! CPap still helps Samuel breathe, and is connected by the trache, but instead of breathing for him, like the ventilator does, it simply provides pressure support to aide in breathing. Samuel is taking his own breaths! AND, he is only on 25-35% oxygen! (Remember, 21% is room air... what we breathe.) In the past week, we have even weened on the pressure support quite a bit, and it seems to be going really well. This is GREAT! It is also scary... while we are celebrating, we are also cautious. Unfortunately, we've been here before... But, fortunately, there is no chance of this being a false-positive. In other words, even if he backslides a bit, there should not be any sudden crashes like we've had before. Samuel lungs are working... we know this because there is no other explanation. He is not on any respiratory meds or steroids... there is nothing that could explain how well he is doing, except that his lungs are getting better. Slow and steady - go Samuel!

We also continue to ween his meds, the morphine and versed... he is getting close to coming off of them. This would be excellent for a couple reasons... first, it's just great to not be on meds! Second, that would mean his pic line could come out. It's the thing stuck to the side of his head in all the photos, and while it's not a bad thing, anytime there is a line into the body it increases your risk of infection.

Next steps - this week they will continue to run tests to help with the decision of the best kind of more permanent feeding tube. Not permanent meaning forever... permanent meaning the one he will come home with. Currently his feeding tubes are in his nose, but his new one will require surgery and be inserted through his stomach. There are a few options - I'll spare you and just let you know what we decide to do :) Bottom line, Samuel can't eat with his mouth yet. I know, crazy that you have to learn how to eat - but it makes sense! He's never had to, so he doesn't know how. Let the fun begin :)

Time with dad - I love to cuddle!

I'm getting better every day at sitting and holding up my head! OT and PT work with me almost every day... now that I'm off the JET, we even get out of the bed and work out on a big bouncy ball and a floor mat.

My abs are getting stronger... I love to kick my feet!

Even though I have lots of toys, what I really like to play with are my tubes :) Don't they look fun!

So tired... must keep playing...

Time to try bananas! YEA!

Checkin' them out...

A little taste... hmmm...

Fun with bananas!

Yum! Banana fingers!

Whew! Time for a nap :)

**The funky suits we had to wear, with the gloves and masks, were when Samuel had a temperature. While they were waiting for the results of the work-up (all of which were negative - yea!) everyone had to wear them. Poor guy - hope he could tell we were smiling by our eyes!