Heart of Beckett

UPDATE (5/27/13)

I wanna first begin by honoring today, as it is Memorial Day, and not only give tribute to those who’ve served our country (as my Grandpa did and both Leah’s Grandparents), but give respect and appreciate both Leah and my heritage. We’ve come from an amazing heritage that we are very proud to now represent. Thank you Mom and Dad, our grandparents, and certainly our grandparents who’ve gone before us…we hope to make you proud and have decided to relentlessly hold fast to that which we have been taught at an early age. So, I’ve said it before and I’ll say it again…in our Family, we will choose to serve the Lord; he will receive all the praise no matter how hard or how great our situation may get. To God be the glory, great things he has done.

Sooo, onto the main show. Beckett has had a good day today! PTL! We had a good conversation with Cardiology and enjoy working through some details and a good game plan for the immediate future. Basically, rather than giving him rescue doses of narcotics (like morphine), which they had to again last night unfortunately, they are going to try a sedation med (called Ativan), so that we can continue to wean his current narcotic, methadone. It’s a great/better plan, and we were even able to get them to have some kinda “on hand” so that it can be administered a little quicker rather than the nurse telling the doctor, getting permission, waiting on pharmacy to deliver it, scan it, have it “witnessed”, to then finally administer it. They’ll have to do some of that, but are aware of getting him this med to calm him down ASAP, when needed.

He is still struggling with reflux, but we are working through it with him. It’s not that reflux is that “bad”, it just is for him because it really scares him, which makes his heart rate drastically decrease (when choking), then shoot way up, he’ll get all wide-eyed, sweaty, and it’ll take anywhere between 20-45 minutes to calm him back down. This then effects his breathing as well, and his breathes-per-minute will shoot way up as well. He’s ok though. It’s just taxing on him and us, and can get a lil scary for the both of us when he is gagging and desating.

Whelp, that’s about it. I’m heading back home tonight for the start of my summer internship tomorrow (Which, tomorrow is also Beckett’s 5 month old birthday! Crazy, huh?), so, we’ll be back to trying to figure out some sort of rhythm once again. Thank you again for the prayers and support. #GoBeckett!

#ODAAT

— with Leah ‘Whiteley’ Rupp at Riley Children’s Hospital.