Tuesday, January 4, 2011

See Ya Later 4.0

My first title for this post was Secretion Management 101. Why in the world would I write about managing secretions?

Before I answer that, just in case the word secretions isn't a daily word used in every house like it is in ours... secretions are kind of like boogers :) Since Samuel breathes through his stoma (the hole in his neck), his secretions don't come up by way of his nose or mouth like all of us without traches. When Samuel coughs, his secretions come through the trach... which is why we have to suction them out. He is now strong enough to cough them up, so we're not dealing with actually trying to loosen them up from his chest anymore, but once they come up there's no where for them to go... gotta love the suction machine! This post really wasn't intended to gross anyone out :)

So... we are working on managing our secretions because something changed today... we downsized the trach! From a 4.0 to a 3.5! This is a big deal - not only does this mean the trach is smaller (which among other things means that Samuel has to manage his secretions a little differently), but the stoma will start to get slightly smaller to compensate for the new trach, and this is another step towards eventually decannulating (getting rid of the trach)!

One of the big reasons we were able to make this move today is because while we still have the ventilator in our house, Samuel has not used it for FOUR weeks! Did I forget to mention that in previous posts? :) After four weeks off the vent (still using the HME/thermovent, trach collar, and extra oxygen, but no vent), Samuel's blood work today was excellent! The best it's been in a long time! Oh my... very surreal...

I tried to post about this before, I really did. I don't know how to explain how I'm feeling... I know, BB with no words doesn't happen very often, but this parenting thing leaves me tongue-tied quite often :) Prior to our appointment in early December, our pulmonologist said to trial Samuel off the vent for a week. At the following appointment, his blood work was okay, meaning CO2 and base excess were both a little high, but not high enough to warrant putting Samuel back on the vent. So, the doctor said to try keeping him off the vent the entire three weeks between that appointment and the one we had today.

As I said above, after four weeks off the vent, Samuel's blood work was excellent! CO2 was lower then it's been in a long time and base excess was down tremendously. Based on the numbers, our pulmonologist called our ENT - we met with her and they both agreed about downsizing the trach. They also agreed that if Samuel can have another four weeks off the vent with good blood work then we can talk about taking even more steps towards decannulating! There are still a handful of steps to go, but this is the closest we have ever been to not having a trach.

I am so excited for Samuel! I am so excited for our family! I am so excited for Samuel's parents :) I am also back to a place I haven't been for a while... nervous and anxious to get too excited. What if I get my hopes up, and we backslide... what if I get really excited, and things don't go as planned... what if. I think I know why it took me four weeks to post this incredible news... I needed the last four weeks to be mine, and DB's, and Samuel's... and I needed it to have the courage to say that I don't care "what if"! That's not as easy as it sounds. But in my opinion, there's really no such thing as being too excited about something :) What's the worst that can happen? We've taken our share of detours and backslides in the past two years, and you know, none of them buried us. In fact, I am positive that they've made us better, and more thankful, and more grateful, and more faithful. I'll never know for sure, but that's okay, too.

We are overjoyed! Samuel's progress is absolutely incredible! The miracle continues :)

A few more photos from our Christmas season...

Samuel, Do, and the Icky Sticky Frog... quite a graphic circle-of-life book, but the phrase that's repeated throughout makes Samuel laugh every time!

Uncle Aaron holding court during coloring time :) It's almost like they're paying attention in art class! ha ha!

Mo and Do covered in babies - they don't look too upset about it :)

Uncle Aaron and Samuel exchanging facial expressions :)

George went to help Do and DB pick out the Christmas Tree. He even came home with his very own little tree (see his right hand)!

George and Olivia in their new house!
This thing is great! Mo actually made it for Aaron and I back in the early 80's I think, and the kids absolutely love it.

Before bed story time :)

Who says you have to choose? You can be a princess AND a firefighter!

Daddy and Samuel sharing a good book, one of DB's favorite's - Santa Mouse. Very sad, even with lots of preparation to make sure the light at the top of our tree was yellow so that Santa Mouse would come, it burned out!

Multi-tasking. George wanted to be a helper and take Olivia her milk, but did not want to give up either his milk or truck to do it. I was seriously impressed he made it from the kitchen to their bedroom!


shannon said...

I don't know if you remember me...but I'm Jasmine's mom from MUSC. Samuel looks wonderful and you have a beautiful family!!! I'm so happy he is doing well...be blessed!!!

Lindsey said...

that is awesome news. love what you wrote about celebrating every step forward and not worrying about the "what if's". we are excited with you guys!

Elizabeth and Gary said...

Wow. Really awesome news. Good to hear you had such a great Christmas season, too. Warmest wishes for the New Year. Gary

Laurie said...

Bethany, it's been so long since I've had a chance to catch up on your sweet babies!! Samuel looks amazing! I have to admit I read this post and cried because I remembered what it was like to go from vent to room air and the constant fear that we'd be back on oxygen.

I felt something similar when we went from gtube to taking it out... 4 weeks without using it, and I fought the doctors a small amount on taking it out because it was my safety valve, and I was afraid it was too good to be true. I am so happy for you guys!