Heart of Beckett

UPDATE (5/23/13)

Beckett had another good night last night. As we arrived at Beckett’s room I typically ask the nurse some standard questions like:
1) How was his night?
2) How is he doing?
3) Have either the Neos or Cardiologists rounded already?
(and if so…)
4) Are they making any changes today?
5) Etc., Etc…
The nurse informed me that he had a good night, he’s doing well, they’ve already rounded on him, and that there are no changes today. A few minutes later one of the nurse practitioners walked up to our room and said, “Sooo, looks like we will be turning off Beckett’s Milrinone today!” That was kind of a shocker. I looked over at the nurse and she couldn’t help but say, “That’s not what I was just told.” After hunting down some clarity, we were pretty certain that was the plan for the day. Even though Leah and I were fairly indifferent about the decision, it was difficult to ignore that Beckett was just weaned yesterday…so we felt as if he hadn’t really been given a chance to adjust. The Cardiologist came up to talk with us and explained why they made that decision, but also wanted to make sure we were comfortable with it. He explained that Beckett is on such an incredibly low dose of the Milrinone now that, in theory, they feel as if they pretty much weaned it yesterday when they turned it down to .06 He advocated that he thinks Beckett is ready, and that they would like to proceed with the wean. After reaching a consensus, the nurse reached over and just turned off the pump. It was kinda like…whelp, here we go.

Additionally, the Cardiologist mentioned that the weekly Cardiologist/Surgeon meeting that usually takes place on Friday mornings is happening later this afternoon. However, he then said that we probably still won’t hear what they decide until first thing tomorrow morning. Sooo, we wait (you’d think we’d be good at that by now…..but it’s still difficult)…

On a bit funnier/sad note (I bet you never thought those two words could/should go together), Beckett’s Pharmacist put together a projected weaning schedule tailored specifically for Beckett to be taken off the Methadone (a pain med) that he is still on. His best guess is anywhere between 30 and 40 days……yikes! Well, I guess they are beginning to learn Beckett a little better. And on top of that, that weaning schedule was suppose to begin this week, but hasn’t yet due to this Milrinone wean. Sooo, sad but kinda humorous (in a shake your head in disbelief kind of a way).

Here we sit, again, in Beckett’s room just watching him sleep (/heal ;-)) and taking it one step at a time, understanding more-n-more each day how precious life is and how thankful we are for yet another day with our amazing son!

Goodnight y’all….please pray with us 1 Chronicles 16:9-12
Sing to him, sing praises to him; tell of all his wondrous works!
Glory in his holy name; let the hearts of those who seek the Lord rejoice!
Seek the Lord and his strength; seek his presence continually!
Remember the wondrous works that he has done, his miracles and the judgments he uttered.

#GoBeckett
#ODAAT

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