The morning began with Beckett in quite the good mood, and actually holding pretty solid saturations. So we ran down and got some breakfast from McDonalds (facilitating my weight gain), and shortly after we returned Beckett began to “drop beats”. It wasn’t necessarily an arrhythmia, but more so like I just said…he just wouldn’t complete an entire heartbeat here-n-there. So they called in a Cardiologist who helped calm our anxiety and sort of just talked us through any questions we had for him. Also, Beckett’s blood pressure began to rise slowly, which was certainly disconcerting. Again, the Cardiologist help put that to ease….but we all did “agree” that it wasn’t “ideal”.
We then inquired about Beckett’s Cath to see if that was still the plan for the day. They said that it was scheduled or around 2:00pm or 3:00pm today. At around 3:00pm we were told that it’ll happen at around 4:00pm. Turns out, we did end up taking Beckett down for the Cath at 4:00pm….however, he was just crying and screaming the whole way down.
To be honest, both Leah and I have been uneasy on-n-off throughout the day today. We couldn’t really ever put our finger on it, but something just didn’t feel right. So at one point, I just stopped what Leah and I were doing today and just prayed against these unsettling feelings and asked God for peace and comfort to rest in his will as he continues to fight for us (including Beckett).
Back to the Cath. We actually stepped outside for a moment this afternoon (during the Cath) and just tried to enjoy the weather some. Leah and her mom did a crossword puzzle, and I just tried to relax. We eventually came back inside to be pleasantly surprised with a visit from my aunt, uncle and cousin. I wished we could have brought them in to see Beckett, but he was still out at his Cath. So my uncle prayed with us and we went back to Beckett’s room.
Shortly after, Beckett returned. They said that he handled the Cath really well, but that we need to wait until the doctor speaks with us about what he found.
What does that mean?!
…I guess we’ll find out.
So we waited and waited (what seemed like forever, but it truly wasn’t that long). Eventually saw him walk around the corner and with a pretty straight face. He greeted us and proceeded to talk with us about Beckett’s collaterals (keep in mind, collaterals and his pulmonary pressure were what we wanted to hear about). He said that he didn’t end up plugging any collaterals…he said that they were too hard to get to and not worth plugging because of Beckett’s pressures. You may remember from a while ago that Beckett’s pressures to handle the Glenn procedure he had on July 2nd needed to be around “15” or less (preferably less), and when the pressures were checked, one side was about 15 and the other side was about 25. Twenty-five is NOT good and the Glenn procedure would fail. So when the surgeon opened Beckett up on July 2nd, he remeasured Beckett’s pressures and saw that they were in the upper teens…so he decided to proceed with the operation. And to everyone’s surprise, he had been handling it quite well. So with that being said, this cardiologist that just did his Cath was surprised by Beckett once again that his pressures are measuring at around 10-12 on both sides! That’s amazing! Amazingly good!
So here we are, sitting in Beckett’s hospital room once again and praising God for another big win today. We are worn out (and at times, very frustrated), but we are thankful Beckett’s effusion has gotten drained and his Cath went well (and yielded great results). Now we just wait to eventually pull the chest tube out, wean him back off the VapoTherm, head back to the heart center floor, recover, then go H.O.M.E. (again). That’s OUR plan….but we’ll see what Beckett’s plan is. 😉
I was reminded today that it has already been a month since we dedicated Beckett to the Lord! It was truly a special moment for us back on July 1st, and if you missed it (or just wanna see it again), here’s the link:
Beckett is a gift, and these past few days are yet another reminder to not take any new day with our son for granted. I charge you to do the same! Take “it” one day at a time, and as cheesy as this phrase may be…..”live like you are dying!”
Let us hold fast the confession of our hope without wavering, for He who promised is faithful.
— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.
thank you for your commitment to us…through your heart and eyes we are reminded of His strength and faithfulness to us