June 14, 2013

UPDATE (6/14/13)

Where to begin? Well, I feel as if I should try to categorize this update into 3 categories: News, Current Status, and Going Forward.

News:
Sooo, a lot of exciting and stressful news today. I’ll try to keep it short…..I’ll try. When we arrived this morning, we were told that the weekly meeting this morning consisted of 3 pediatric cardiovascular surgeons, about 20 cardiologists, and even the lead Neonatologist of the NICU here at Riley (we’ve seen a lot of him lately…but he’s great); that is a lot of great minds in 1 room. They came to a consensus. As Leah mentioned, his pressures in his pulmonary arteries are unbalanced. We were genuinely concerned as to how that may influence the cardiology team’s decision of how to proceed. A large number of them made their way through the NICU, and finally landed at our door….and here is what they said. Surgery will be in about 3 weeks! Wow! They then went on to explain that during the Cath yesterday, they were able to gather his pressures from 2 different perspectives. The one perspective gave the unbalanced pressures, however, the other perspective showed the pressures to be not that bad….not perfect, but not bad. This, though, is not convincing enough to proceed with the surgery per say. So they have decided to proceed by giving him another heart med that will actually help with these pressures. The Cardiologists said that sometimes they have to “limp” these babies into the next surgery. Though that is not necessarily encouraging verbiage, we understood what she was trying to say. They then said, “So, the surgery will be July 2nd.” Wow, that was a shocker. We knew (/hoped) this day would come eventually, but to have it officially scheduled makes it all the more real and intense. His surgeon is also Dr. Brown, which we’ve only heard amazing things about. Sooo, they are going to be opening him up on the 2nd and do one of two things. (1)They will either open him up, gather his pressures, and if they look good they will then do the second surgery (they are calling it a “Glenn” rather than a “Hemi-Fontan”…essentially the same thing, but they are a little different). OR, (2) if the pressures aren’t that good they will then basically do the repairs or “fixes” that will help him be better prepared for the Glenn “next time”, whenever that may be. Either way, he is getting opened backed up on July 2nd. We are clearly hoping that with time and this new heart med, he will truly be ready for the Glenn on July 2nd, rather than just a “revision”. But either way, we are already praying that everything will just go well. We’ve come so far, we want to finish this race!

Current Status:
Next, Beckett’s current status. Beckett is officially Extubated…that happened last night sometime around 3:30am. Also, he’s been kinda grumpy all day today. His Crit was low again, so he just got another transfusion. Lastly, he started his arrhythmias again today. The news of the surgery and everything was nerve-racking, yet exciting….but once these arrhythmias began again, it really put Leah and I back on edge. This time, however, his heart rate was shooting low rather than high (at first). It was really scary (for us). His heart rate would be just fine for a while, the all of a sudden dip really low. It’s been happening since about 2:00pm. Now, into the evening, he started shooting his heart rate really high. We’ve had our nurse get the Neo and contact Cardiology. But Cardiology just wanted to know what Beckett’s lactate was. After running some tests and blood gasses, everything looked pretty much normal (his potassium was a little low, but nothing that couldn’t be fixed really quickly). This news didn’t even summon a visit from cardiology. I guess they asked our nurse a few questions: (1) “Does he look ok?” (2) “Are his sats ok?” At which out nurse had to simply respond that he looks just fine. Sooooo….he’s still doing it (throwing his heart rate around with some extra beats and all). I’d be lying if I said that both Leah and I aren’t concerned, but we are trying to find peace that the cardiologists, neos and nurses don’t seem overly concerned….they’re “watching him.”

Going Forward:
The plan is to get this new heart med, Sildenafil, gradually on-board. We also need these arrhythmias to go away….and really anything else he may need to beef him up for July 2nd. We’ve got a great nurse tonight (Chrissy shout-out), so we are going to try to leave with some sort of peace-of-mind.

As Leah mentioned yesterday, this isn’t getting any easier. We want “this” to go-away just as bad now as we did way back in late December. This hurts, it’s tiring, it’s draining, it’s exhausting, it’s humbling, it’s challenging….but we’d do it all again if it meant/means keeping our son. I wish we had the attitude that did not depend on the gratification of keeping our son, but it’s understandable. We understand that this has been wildly forming for both Leah and I, our family, and many of you. Yet, as I’ve said before, I wish this would just all go away. I want my son “healthy”, but I think I may be typing out of weakness right now. All I know is God is good, he loves our Beckett more than us, and we are completely and utterly dependent upon him. It’s our prayer that you (who are reading this post), may come to that understanding as well. This is a journey, so is life…so try not to wish it away (as through my weakness I can tend to cry out) and just embrace what has been laid before you. God is doing big things in the life of my son, and in your life as well. You are not immune to his control. May He be forever glorified!

#GoBeckett
#ODAAT

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

2 thoughts on “June 14, 2013

  1. A lot to pray about and all has been added to my prayer list. Be assured of continued fervent prayers asking/begging for a healing miracle for your son as well as strength, endurance, wisdom, and perseverance for you and Leah.

  2. doriew says:

    I am 82 years old and have never faced what the two of you are facing. I am so honored to witness what happens to a couple whose faith in our loving God supercedes everything that this life thrusts upon them. That is rare. That precious baby is a example of what your f aith has kept going forward for 5 months. May God guide the medical staff who make such crucial decisions and give His sustaining grace to you two. Real love is defined by you. God bless……Neighbor

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