Heart of Beckett

UPDATE (7/16/13)

Another great day again today. At one point, the flow on Beckett’s oxygen was turned down to 1/16 of a liter (that is sooo small, it’s amazing that’s even a setting on the valve). However, it didn’t last too long because they had to redo his dressing again (unfortunately) on his PICC line, and while he was crying and sweating sooo hard from that, he sweat out his sub-q port in his thigh for his lovenox shot. Sooooo, then…that had to get put back in; eventually, he just needed a little bit more support. But it was only increased to 1 liter and is already back down to 3/4 of a liter.

We were told today that even though the option of going H.O.M.E. this weekend is not out of the question, it is looking more like it may be sometime early next week. They would prefer to increase the volume of his feeding a little bit more before we leave (though it’s not necessarily a requirement), and every time they’ve tried he hasn’t really tolerated it amazingly well. As you may know, Beckett struggles with reflux, so an increased volume is definitely going to have an effect on him. In fact, I just stopped typing this post for a moment and he threw up again just now. I know, I know…all babies spit up, but it’s just a little different for him. It can really effect his breathing, which can really effect his heart rate, etc, etc. He is “handling” it better and better. As in, he recovers with his saturations fairly quickly, and even cries much less. He’s a fighter, and he just fights right through it. #ProudPapa

Well, that’s about it. Oh, other than our home repairs. I THINK it’s getting finished up either today or tomorrow. This is amazing to me. I definitely, at one point, was fairly convinced that this wasn’t going to get done in time. Let’s just say we have the most amazing family and friends. Thank you everyone…we are sooo blessed!

#GoBeckett
#ODAAT

— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.