Good evening. What an emotional roller coaster, huh? We are now making our new home here at Riley, the 4th Hospital (3rd Network) since Beckett has been born. We have been welcomed with open arms here at Riley, and have really appreciated the care and concern they are already showing towards Beckett. However, we do miss our old friends from St. V’s, but they each know they can visit us at anytime. That offer is open to anyone else as well. Clearly, it may be challenging if a few hundred people show up at the same time, but as long as you are healthy, and you are reading this post, you are welcome to visit! If you think the pictures are cute, you are in for a treat to experience our Beckett face-to-face. He’s got an incredible skill to just draw you in with his eyes and not let go. 😉
Sorry we did not post a second post last night. I actually did not get back home (here in Indy) until about 2:00am. Beckett had such a great day yesterday that as the evening began to wrap itself up, Leah looked at me and said “If you promise to take me home [to Indy] tonight after Beckett’s [2nd] Benefit at Taylor University…I feel comfortable enough to come”. That’s a big deal. Leah rarely leaves Beckett’s side. In fact, as I type this update, she has been holding Beckett for the past few hours, and when I asked her how long she’s been holding him, she seemed to surprise herself when she realized it’s been so long. It just feels like time is an irrelevant continuum when it’s just her and her son…it’s a beautiful thing. I can’t help but laugh, in which she questions why I’m laughing, and I don’t really ever have a good answer other than how endearing it is to simply watch her lose herself through the undeniable love she has for our son.
The Benefit was amazing last night. So many people came out in support for our son…I just wish we had a better word than humbled, because I feel as if that word isn’t quite adequate. If I begin naming names, I’m confident I will accidently leave someone out, buuuuut, I have to mention a few. Sooo, a huge thanks to the MAHE Cohorts, Amy Wilson, Steve Austin, Jake McCurry, Taylor Smythe, Eric Strong, Josh Kiers, Seth Abram, Jason Miller, and all those who donated gifts, time, talent, etc. And then to all those who came…geesh…so cool. So so cool. Thank you.
To fill the gap of my last post from yesterday (late morning) until now…Beckett is rockin’ it! Sorry, I should state it more professional, but “good” just isn’t cutting it anymore. He had that “invasive” procedure in the morning and did really really well. Then, when moving into the afternoon, we realized that the communication began to slow down. Later it was made evident that they were rethinking things throughout the early afternoon (when he was suppose to be having his MRI of his belly). They decided that this wasn’t the appropriate measure (for various reasons) and encouraged us to flush out his gall bladder. They made room to squeeze it in that evening, and after some Q&A time, we said “Lets do it!” So, this is now the second “invasive” procedure of the day. It was a concern, but he had handled the early procedure so well, they truly felt he could and would handle this just fine. After a longer time than we were expecting passed us by, they finally found us and calmly explained how well he did and they were able to clear our a tiny obstruction in his bile duct. They are now just draining any unnecessary sludge with a drain, and we were informed this morning that his bilirubin has already decreased another 2 points! Then, today, he got extubated once again!!! Yay! He’s handling it well, and we are just sooo relieved and at peace with his current care and condition (hence, emotional roller coaster). He currently looks great, and the plan for this weekend is to just chill and recover. Beginning early next week, they will shoot some dye into his drainage tube to confirm that everything has been relieved and “fixed”. If the dye flows well and correctly, they will simply remove the tube and that problem is theoretically solved. We will be waiting to then hear further details to a game plan for Beckett’s recovery and will have more details at that time.
As always, thank you for all of your unwavering support. It is so encouraging and invigorating throughout this journey. Beckett is nearly 4 months old now, the Heart of Beckett website has only been live for about 3 months, and we’ve already had over 50,000 hits! That’s just crazy! Sooo, hang in there with us and with Beckett. We are in another upswing, and it feels sooo good.