So, even though I wasn’t with Beckett for most of the day, I will attempt an update for everyone. Leah is back home once again (#TagTeam) and is heading back to work (tomorrow) for yet another 12 hour shift. I have been in school the past few days…and quite frankly, am a little overwhelmed with all that needs to be done within the next few weeks. God has helped me thus far, so it’s simply a lack of faith to challenge the possibility of finishing this semester strong. I know “I” can do this, I’m just not sure how.
With that being said, my “motivation” is doing well once again today….his name is Beckett. Have you heard of him? 😉 Riley Hospital has definitely/officially caught the “Beckett Bug”. Leah said that doctors, nurses, cardiologists, etc stop by frequently with what seems to be a routine “checkup” but always later appears to be more like a “check-out”. I don’t really mind though. It’s like show-n-tell. “Hey, look everyone…look how awesome my son is!” #ProudDaddy But in all seriousness, Beckett is such a cutie, and if you think his pictures are cute, you should just see him in person. Also, and if you’ve been wondering, I haven’t posted a picture in a while mainly because he currently has an IV in his head. Apparently that’s normal, and not a big deal, but it’s kinda gnarly, at first, so I’m anxious for that to go away. Once that IV is gone (which may be a soon as tomorrow), I promise to post another picture soon.
Beckett had another echo once again today (which is basically a fairy accurate “picture” of his heart and heart function). The results are supposedly showing very little change since last week when he first got here, but the few areas it may have changed some look a little bit better. They are saying that this is “good”. Surely we’d like to hear that everything looks great, but I think they’ve literally said, “everything looks ‘Beckett good’”…sooo, that’s good, I guess. They have completely weaned him off his milrinone (which is a med that helps his heart), and yet his heart function still looks really good (or, “Beckett good”). These are definitely things we enjoy hearing, especially as it is “good news” pertaining to his heart. That’s awesome!
His VapoTherm is weaned down to 2 liters and he is still on room air (21%). If you’ve been following these post for a while, that should make some ssense, but if not…it basically means that he’s doing really well thus far from a respiratory standpoint.
PT (Physical Therapy) and OT (Occupational Therapy) are back once again. Leah said that he’s been doing well with that too. Similar to PT (kinda) is his new “trick”, which involves playing with some hanging toys in his crib. They dangle right above his chest/belly, and he just loves batting them around. It is so darn cute!
I think there have been a few other minor changes, but I cannot recall what they are at the moment. I know that they spoke with Leah about the supposed “game-plan” we’ve been waiting on (Beckett has had a lot of bumps that have needed to be taken care of before we can really get to a “game-plan”), and it looks like that may happen sometime next week. I think the current plan has been to continue to just get him more stable and wean him off of some of his support meds. We want to know things like: When are we going home? Are we going home before the second surgery? Etc? Etc? But I don’t think those questions are really answerable quite yet, but it appears that we are getting close (and by “close”, I mean to answering those questions…not necessarily going home quite yet).
We are truly grateful for this past week of progress. Grateful to the Doctors and Nurses here at Riley. Grateful that his condition was caught back at Lutheran in Ft Wayne. Grateful for all that Peyton Manning Children’s Hospital did for him (saving his life…multiple times). And definitely grateful for all that the Women’s Hospital was able to do for him during his challenging chapter of infections, respiratory issues, etc. etc. We are thankful he is still here with us for yet another day. And we are thankful to our God. I am so amazed at all the legitimate miracles God has done in and through my son. There have been so many things the Doctors can’t even explain, “things” that only God could have been present in. May we all (even you who are reading this) be forever changed by the story of Beckett. To love deeper. To pray harder. And to acknowledge our God in and through the big AND little things. He is present, and He cares. May we always be people of gratitude, both through the difficult times and certainly in the easy. God, you are sovereign. I give you all the glory, honor and praise for all that you’ve done, are doing, and are yet to do.
— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.
is this how i can get ahold of the parents, threw this email?
Praying for your family. We read your updates regularly. 🙂
Looking forward to seeing those pictures of Beckett. 🙂 He has not only captured the hearts of those who care for him on a daily medical basis, but also the hearts of those of us who are following his story. Continually praying for Beckett, Leah and you as you all travel on this journey of hope while being steadfast in your trust in our Lord to get you through one day at a time.