We got it! We got the call to move forward with the plan to decannulate Rudy’s trach and thanks to Rolf’s mad photoshop skills, we can give you the little picture preview above! Ha Ha It’s a bit surreal and, I admit, I have mixed emotions but the bottom line is that it’s a good step for Rudy and sweetly timed as we approach another big milestone in just two weeks…his 4th birthday! 🙂
How strange it is to remember how Rolf and I felt when Dr. Rick sat us down in February of 2009 to tell us that we had run out of options and it was time to trach Rudy…ugh, we felt so defeated and terrified and now, here I am, barely able to remember a day when Rudy didn’t have his trach, all the trach care second nature and a little scared to say “goodbye” to something Rudy has relied on for so long! This journey is so twisted and manic at times!!! Ha
So, the “big picture” situation is that his team of cardiologists are in agreement that Rudy is not a candidate for the Glenn and therefore will not be scheduling any major heart surgery in the foreseeable future. 😦 Based on this assessment, they have given their consent to remove Rudy’s tracheostomy which will hopefully give him a greater range of mobility in general and reduce his risk for infection, etc. It’ll make pool time a lot more fun too and open up the opportunity for Rudy to learn how to swim!! 🙂 It will mean, however, that he’ll need to learn to tolerate the nasal cannula through which his O2 will need to be administered 24/7 and he’ll need to be intubated during future surgical procedures which isn’t pleasant 😦 but the pros certainly outweigh the cons at this point. 🙂
We’ve already made contact with Dr. Nina’s (Rudy’s ENT) surgery scheduler and have reserved Rudy a spot in the OR at UCLA on Tuesday October 16th!! He’ll need to stay overnight for observation so if all goes well, we’ll return home on the 17th minus the trach and able to post a pic of the real deal! 🙂
Yay! BIG stuff! BIG step! Excited! Nervous! Grateful! Taking it all in…one day at a time! 🙂
2012
Rudy's Beat 
Amazing! I am so excited for him and you!
Wow! This is monumental! What wonderful news my friends!!!
you got me I did not even notice the trache missing.
Its good news and maybe he will be able to go without O2 longer too.
Love you all and see you after the fact. Love to Grama Jo !!!! O+O
One step at a time! A perfect birthday present too!
This is fantastic news, indeed! It is a true “milestone” and will surely rank forevermore as one of Rudy’s very best birthday gifts. I’m so happy for him and all of you. I can’t wait to see his first pool “dunking,” hahaa. Congratulations for another monumental step forward. It’s absolutely incredible….. 🙂
I get all of this Trish – how thrilled you are, how sad you are, how scared you are. Isn’t life just a crazy mixed mash-up of all that at once? He looks GRAND with or without that trach. Waiting with you to see how he tolerates this new reality . . . and how you do, too. :>)
God bless this precious boy! You are so loved on this end, Rudy!
Woot Woot!!!
I too did not notice he was without a trache. I never even saw it, I only saw the sweet boy that we have all come to love.
He looks so grown up. Best wishes and a Happy Happy Birthday to RudyToody.:)
This is fantastic news. Just what a 4 yo needs on his birthday, more freedom to move and stay healthy!!!
What great news! He looks like such a little man in this photo; too cute!
Yay!!!! So glad to hear it. Following Rudy’s progress and recognizing how you truly live one day at a time reminds us to do the same in our own daily lives as Matthew chapter 6 admonishes us to do. Thank you for the awesome example you all are to the rest of us. We hold you daily before the Lord in prayer. Texas size hugs to you Trish and your family.
Fingers crossed for the trach removal! I just can’t believe he is going to be 4!!! Beautiful picture with or without the trach!!!
Wow! Praise God for every milestone! Yeah!