Heart of Beckett

UPDATE (6/6/13)

Soooo….I was planning on writing this post about things like:
– I finally got a tour of the new facility
– Or, we had an ultrasound this morning looking to see if he still had one of his (two) clots in his leg (the other being in his head)
– Or, that he’s been fussy a lot lately (like the past 48 hours or so)
– Or, the fact that his VapoTherm got weaned today.
– Or, that they are gonna try to do an MRV tomorrow to check on the blood clot in his brain.

BUT, instead, I must post on our most recent undesired event. Besides the fact that both Leah and I woke up this morning with headaches that only got worse as the day progressed, just a few hours ago Beckett decided that we had been getting a little too used to this uneventful stretch of days/weeks. Sooo, here we go: Beckett had been kinda fussy the last 48 hours or so (as I’ve mentioned)…just not sleeping well, taking short naps, and suddenly irritable. This was the case again this afternoon, so Leah decided that she would hold him for a while to help encourage an opportunity for him to sleep well for an extended period of time. As observant as Leah always is, she noticed that Beckett was “throwing” what’s called PACs. She asked for me to go find a nurse and let them know. Apparently, PACs aren’t necessarily that serious, but as soon as the nurse showed up, in addition to a few doctors, he began to do something we haven’t seen since January and once in February. He began to do something called SVT. He shot his heart rate as high as 210, then back down to the 1-teens. He did it a couple times, and thankfully it was when the doctors were here and we were even able to get a print out of it for cardiology. It was very scary, to say the least. You could tell that Leah and I were trying to stay calm, but our adrenaline was pumping and our heart rates were definitely increased. Eventually they wheeled in a EKG machine to gather a more accurate read of his heart rate. We got some good print outs and then just waited for Cardiology to arrive. Once they came, they reviewed the print outs and basically mentioned that they will be watching him closely. Turns out, our nurse this evening has only had Beckett once, and over a month ago. She seems very skilled, but she will have her hands full this evening, and there is always natural concern going “home” after an event like this.

We’ve yet to eat dinner, headaches are now only getting worse, and we know that he still has many more tests to go (an x-ray, additional blood gasses, etc).

This is scary (naturally), but these are certainly the times to challenge our faith and decide (or live out) if we truly believe what “we’re preaching”.

Isaiah 43:1, 2
But now, O Jacob, listen to the Lord who created you. O Israel, the one who formed you says, “Do not be afraid, for I have ransomed you. I have called you by name; you are mine. When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression, you will not be burned up; the flames will not consume you.

#GoBeckett
#ODAAT

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