Heart of Beckett

UPDATE (8/24/13)

Not much to report on today:

I pretty much just hung out with Beckett all day. He’s been whimpering a lot, but it wasn’t until later this evening that I remembered they weaned his methadone again yesterday (they really really wanted to), and we might be seeing the first signs of the withdrawal from that wean. But he wasn’t mad all day. We went on numerous wagon rides, hung out in his room, practiced sitting up, we played with his toys, I played guitar for him, played peek-a-boo…..all kinds of stuff. He’s such a smiley/good little boy (most of the time). He usually is only ever mad or upset if there is actually something “wrong”, in which case he obviously deserves to be a little fussy.

As you might have read from yesterday’s post, we’ve been anxious to find out about those goofy little beats Beckett dropped yesterday. Remember, one scenario is bad and the other is acceptable. Well, our nurse told me that the Cardiologist didn’t feel comfortable sharing his thoughts with me about it until he spoke with our Cardiologist. To be frank, that kind of freaked me out. So I tried to text that to Leah (cause she was at work today) in a way that didn’t sound bad or make her worry…but I think I failed because she has been on edge all day about it too. So I decided to just take a deep breath and just wait. So I waited, and waited…and waited some more for the Cardiologist to even come and tell me something. 3:00pm rolled around, and I decided to solicit some clarity. I told one of the nurses at the front desk that I’ve been waiting to hear from the Cardiologist today about an “issue” with my son, and asked if she could page him. She told me she’d try. About 5 minutes later I was told that the Cardiologist had already left for the day and that she was able to get a Resident to come and try to answer any of my questions.
Ooooooo.K.
So up came a Resident in which I proceeded to ask for clarity on their opinion on Beckett’s heart rhythm issue from yesterday, she said she didn’t really know much…and that she thinks they are just gonna wait it out until Monday and talk about it then.
That would have been nice to know.
Again, we are trying to assume that no news is good news…but things like this can be unsettling, and not encouraging to our goal of being discharged on Monday morning at some point. But I guess I’m thankful we are being “better safe than sorry”.

I was also told today that IR (the ones who did his J-Tube), may want to redo his stitches on the J-Tube. The stitches are “loose” and are quite irritable to Beckett. However, IR is off on the weekends, so we have to wait till Monday on that as well.
Oh dear.

So here we are, just kinda sitting on our hands (once again), waiting for Beckett’s withdrawals to start kicking in full-swing (not good times), waiting on answers, making countless laps in a wagon, hoping to go home, yet realizing it could very well be delayed once again. It’s hard not to get frustrated, discouraged, and even angry…..but as I was telling a friend today, perspective really is key. I’m thankful I even have Beckett here with me today to get angry “about” (not at him, the situation). As I continue to say over-n-over, this is clearly not the story for every parent we have met these past 8 months…and we are truly thankful for the struggle, it just reminds me that we still have our son to struggle over……..one step at a time.

Psalm 139:1–4
O Lord, you have searched me and you know me. You know when I sit and when I rise; you perceive my thoughts from afar. You discern my going out and my lying down; you are familiar with all my ways. Before a word is on my tongue you know it completely, O Lord.

#GoBeckett
#ODAAT

— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.