Heart of Beckett

UPDATE (8/2/13)

So last night, after I had already posted the update, Beckett began to slowly increase his blood pressure. He seemed to be ok, but we certainly didn’t like it. The doctor assured us that he had some ideas he was going to try overnight, and that he’s pretty convinced he can get it to level out some.

By morning, his blood pressures seemed to normalize. But now we had a new issue. Before I head into that, we were greeted with information that Beckett had a really interesting desatting moment this morning where he dropped into the 20s! That’s not good. But the nurse said that he did bounce back pretty quickly. But the new issue was the continued dropped heart beats in addition to some P.A.C.s….sooo, multiple arrhythmia issues. They didn’t seem overly concerned, but again…it’s not ideal.

Furthermore, he hasn’t slept today….like, hardly at all. He was in a pretty good mood most of the day, but he had a couple crashes (by “crash”…I mean very very angry!) that certainly were not ideal. One “crash” was horrible. He started getting a little mad, so we were trying anything we could other than medicine to calm him down. In fact, we got permission (being that he still has a chest tube to drain the effusion) to hold him. So while he was accelerating his melt-down, we got him out of the bed into Leah’s arms….and when that didn’t work, we knew something else was wrong. It actually spiraled even more out-of-control to the point that we got a little worked up ourselves, and strongly/politely asked, “will you please do something for him!” So they decided to give him morphine. However, before they even gave it, he actually already settled down…but not how we’d prefer. He wore himself out. He seriously went limp, and just laid in Leah’s arms (in his bed). Sooo…he “calmed down”, but not really ideally. They are trying to figure it out, but at times we wished they’d try a little more without our prompting….but that’s probably me typing out of emotion. We really are pleased with our care, but obviously there may be times where we need to realign with our physicians and staff. (I hope this doesn’t sound like complaining…it was just another stressful afternoon).

We were visited by some friends today. Our good friend Chrissy visited once again (she’s been a huge blessing), an “old” friend from our St. V’s day who has always been there to understand all that we are going through (as her son just finished his last surgery from the same condition Beckett has), and lastly some great Riley NICU friends visited. We are so blessed with some great friends who just so happen to be huge “Beckett fans”!

Whelp, it’s been an entire month (to the day) since his last heart surgery! What an amazing day that was! And we have come so far since then. We are so thankful to even be able to write another post of another day with Beckett. Such a blessing! Perspective is everything, and we’ve got to choose that it could be so much worse than this. In fact, just the other day Leah and I walked past a women who said, “Geesh, 2 days is too long to be in the hospital.” And even though Leah and I politely giggled afterwards, we must assume the same perspective that “it could be worse”. May we somehow grasp a healthy perspective outside of our understanding (if that makes any sense).

One. Day. At. A. Time. (#ODAAT)

#GoBeckett

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