Ok. Beckett continues to progress, but at Beckett speed. Yes, we are still on track to going home (which we are still thrilled and yet freaked out about), but most likely not until sometime next week (hopefully early next week).
Though we weren’t expecting this, we were hoping to possibly come off of oxygen support by the time we go home. Well, it doesn’t appear that will happen; I guess it still may, but I doubt it. Beckett’s flow got as low as 1/16 of a liter flow yesterday, but unfortunately when Beckett gets mad he desats pretty hard and needs a little extra oxygen support to fully recover. He is doing better at recovering, it’s more so that he sometimes needs the extra help from time-to-time. Oh well, I’ve been telling Leah that the healthier perspective may be that at least we will have some oxygen at home for when he needs it, as opposed to going home with no oxygen and then needing to go find professional help if he’d ever happen to need some extra oxygen support while we are at home.
They are really working hard right now to increase the volume of his feeds. He’s handling it ok, but he still throws up every once and a while…which seems to concern everyone that he isn’t handling the extra volume. All-in-all, though, they have increased his volume some….sooo, he must be doing somewhat decent with the increased feeds.
Leah, her mom and I got out today to rummage sale shop. It ended with us shopping for some clothes for Beckett. It was actually pretty fun….but expensive! By the end of the day, it really added up! lol Though we didn’t go crazy with it, we felt like Beckett “deserved” some new “going home clothes”….and he’s only been getting bigger. He’s such a cutie though, you can tell that the heart center nurses are already starting to fall for those big brown eyes! 😉
Stay tuned for more “H.O.M.E.” updates! We’re getting close!
— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.
Good days= good progress= good countdown to home. Keep hanging in there and we’ll keep praying for your little guy.