Heart of Beckett

UPDATE (5/18/13)

Today has been yet another great day. It began with an encouraging conversation with the cardiologists. They explained how pleased they are with how he looks and sounds right now, but that they will be doing another echo on Monday. This now leads into the next exciting yet concerning news……they turned his fentanyl off today! Ahhh! I talked with the nurse practitioner and we decided to go for it. I did request another increase with his methadone, and they agreed. Sooo, he is officially off the fentanyl! Crazy! We are very excited, but will be intently watching how he responds over the next few days. We expect it to go well, but are obviously concerned to see how he handles it. Sooo, Cardiology is excited to reengage with weaning their meds now and seeing how he tolerates it (that’ll most likely begin sometime next week). He has proven he can do it, he has just made it loud-and-clear that we go at Beckett’s pace.

Also, his oxygen support was varied today from as high as 50 to as low at 25. It was quite humorous and intriguing how much he needed at times and yet how little he needed at other times. He has currently plateaued at 30% right now and is doing quite well. I gave him a bath this evening while Leah was on her way back down from working in Fort Wayne, and he seemed to really enjoy that as well. All-in-all…I can’t really complain (just an expression). I am very pleased with Beckett’s progress and am blessed to have been able to spend another day with him.

I also had a good friend visit last night and even another friend visit this morning. We are truly blessed with amazing friends and incredible family. And I know I don’t mention it every time, but we are so blessed to experience God in such tangible ways each day…it’s been terribly difficult yet inextricably amazing!

Thanks again for hangin’ in there with us. We so greatly appreciate each and every prayer!

#GoBeckett
#ODAAT

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