Heart of Beckett

UPDATE (5/19/13)

The cardiologist almost made Leah cry today. As he continued to explain his assessment of Beckett’s current heart condition, and when looking at Leah, you could tell that this was yet another emotional moment. We just so happened to arrive at Beckett’s room this morning as soon as the Cardiology team arrived. We began to ask questions and weren’t necessarily prepared for the response we were about to receive. Before I get into anymore trouble with this post, I must clarify…everything the Cardiologist had to say was so encouraging that these emotions were that of joy and relief. I know, I know, that intro was not very nice of me, so I apologize for any emotional harm I may have just now caused…but I couldn’t help myself. Sooooo, more specifically, the cardiologist began to explain that Beckett looks even better now than he did 3 weeks ago, and they are anxious to do another echo tomorrow to take a good look at his Cardiac function. Then……we begin discussing once again another attempt at a Milrinone wean. Leah and I are optimistic that he can do it, especially if the fentanyl is long gone and out of his system. Cardiology has done a great job patiently waiting for this fentanyl wean to be complete, so, in essence, it’s now their turn. Yes, Beckett is on methadone still, but we can wean that later. There are even a few other meds that I think they’d like to get from IV to oral too, but before I get ahead of myself, we aren’t necessarily out of the woods yet with his fentanyl. He is, however, currently handling this wean really well, and so we feel as if this is definitely trending the right direction. So for that, we are soooo very thankful. We hope to never see that word around here again!

Sooo, today has been another good day. Last night, my father got to hold Beckett for a while, which both he and Beckett seemed to really enjoy. However, today my mother was going to hold him and it just never worked out; either he was busy with being fed or something along those lines, or sleeping…and we try very hard to “never wake a sleeping baby.”

Sooo, that’s a wrap. It really has been a busy, successful and even aggressive week, but Beckett handled it quite well…not flawless, but certainly in a manner that made his mommy and daddy proud. We are eager to see what this upcoming week has to hold from a cardiac standpoint, but we will “worry” about tomorrow when tomorrow gets here.
#ODAAT

Isaiah 12:4
“Give thanks to The Lord, call on His name; make known among the nations what He has done, and proclaim that His name is exalted!”

One more thing…Leah’s uncle has returned home and is doing ok. He’s on a bunch of new meds, and they are taking it slowly. Thank you for all your prayers for him, we greatly appreciate it!

#GoBeckett

— with Leah ‘Whiteley’ Rupp at Riley Children’s Hospital.

UPDATE (5/18/13)

Today has been yet another great day. It began with an encouraging conversation with the cardiologists. They explained how pleased they are with how he looks and sounds right now, but that they will be doing another echo on Monday. This now leads into the next exciting yet concerning news……they turned his fentanyl off today! Ahhh! I talked with the nurse practitioner and we decided to go for it. I did request another increase with his methadone, and they agreed. Sooo, he is officially off the fentanyl! Crazy! We are very excited, but will be intently watching how he responds over the next few days. We expect it to go well, but are obviously concerned to see how he handles it. Sooo, Cardiology is excited to reengage with weaning their meds now and seeing how he tolerates it (that’ll most likely begin sometime next week). He has proven he can do it, he has just made it loud-and-clear that we go at Beckett’s pace.

Also, his oxygen support was varied today from as high as 50 to as low at 25. It was quite humorous and intriguing how much he needed at times and yet how little he needed at other times. He has currently plateaued at 30% right now and is doing quite well. I gave him a bath this evening while Leah was on her way back down from working in Fort Wayne, and he seemed to really enjoy that as well. All-in-all…I can’t really complain (just an expression). I am very pleased with Beckett’s progress and am blessed to have been able to spend another day with him.

I also had a good friend visit last night and even another friend visit this morning. We are truly blessed with amazing friends and incredible family. And I know I don’t mention it every time, but we are so blessed to experience God in such tangible ways each day…it’s been terribly difficult yet inextricably amazing!

Thanks again for hangin’ in there with us. We so greatly appreciate each and every prayer!

#GoBeckett
#ODAAT

— with Leah ‘Whiteley’ Rupp at Riley Children’s Hospital.

UPDATE (5/17/13)

Sorry for the late update….today has been a busy day, but not a bad day. In fact, I was initially feeling a little bad writing a shorter update tonight…but in all honesty, shorter typically means “good news.” There is not much to report on other than Beckett has had a relatively good day overall. Praise The Lord (through the good and the bad). There are certainly more things that need to be tweaked, but he’s doing well. I only hope for many more boring and uneventful updates to come. God is still sovereign…and we still trust him and his plan.

#ODAAT
#GoBeckett

— with Leah ‘Whiteley’ Rupp at Riley Children’s Hospital.

UPDATE (5/16/13)

Today was a pretty fun day….fun and relaxing. Leah and I were able to spend the entire day together and worry about nothing but us and Beckett (sounds selfish, but it was awfully therapeutic). Though today was a blend of some struggle and enjoyment, it was fulfilling to spend it with my family.

The struggle or frustration was that Beckett was definitely displaying further signs of withdrawal throughout the day and slowly increased his oxygen support. We advocated for some pharmacologic assistance, and they accommodated our request. However, usually when the request is made, it’s already a little too late by the time it’s administered or delivered.

With that being said, he did sleep for a while this afternoon while we held him and watched a movie together on my laptop. Leah and I joke about how much I enjoy it when Beckett sleeps. I assimilate it with healing. Sooo, as he sleeps I find myself randomly whispering “heal, heal”. Its kind of creepy, but kinda funny. Lately when he’s been sleeping, his saturation levels begin to rise and in return he usually can come down some on his oxygen support. I’m weird, I know…but I just blame it on how much I love my son.

We were informed today that in lue of how difficult the past few days have been, we probably aren’t going to be coming off of fentanyl tomorrow. It was a valiant effort, but possibly too aggressive to try and wean TWICE this week without increasing his methadone. I understand why it was tried (and everybody had mixed feelings about it), but the age-old phrase “if it ain’t broke don’t fix it” kept making its way into our conversations. Oh well, he’s doing ok….he just may have been pushed a little faster than he typically likes. We call it “Beckett Speed.” It’s the speed that defies what “the books” declare as “slow”…it’s a new level of slow. 😉

But like I said, for the most part it’s been an enjoyable day, but not necessarily seamless for Beckett. We are getting close though…and are continually thankful for the care we are receiving here at Riley. No hospital is perfect, but we appreciate the love and care Beckett has always received at every hospital we’ve been to.

“Thank you God for staying near to my son. Please continue to heal his precious little body. Thy will be done…we trust you entirely!”

#GoBeckett
#ODAAT

— with Leah ‘Whiteley’ Rupp at Riley Children’s Hospital.

— with Leah ‘Whiteley’ Rupp at Riley Children’s Hospital.

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

Happy Mother’s Day, Leah!
You’re Amazing!

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

UPDATE (5/11/13)

Today’s been another good day! Beckett is still up a little on his Oxygen Support, but he truly is doing well. In fact, I’m personally quite pleased with how well he appears to be handling this wean from yesterday. He’s slept a lot today and had some quality time with Mommy and even my parents. We had more visitors again today (which we always appreciate), and enjoyed showing him off once again (though he was asleep the entire time).

I was reminded of Habakkuk 3 today that even though our individual “situations” may not be ideal or desired, God still deserves our praise. See verses 17-18:
“Though the fig tree should not blossom, nor fruit be on the vines,
the produce of the olive fail and the fields yield no food, the flock be cut off from the fold and there be no herd in the stalls, yet I will rejoice in the Lord; I will take joy in the God of my salvation.”
But even more intriguing is verse 19 which says:
“God, the Lord, is my strength; he makes my feet like the deer’s; he makes me tread on my high places.”
I must point out that God prepares our way, he “makes my feet like a deer’s”. As in, we are ready for the trials to come (even if we don’t feel like we are). But all the more interesting are the intentional words used that our Lord “makes me tread on my high places.” Again, I was reminded today that these “high places” are dangerous. Though we are blessed with a “view” that many aren’t privileged to see, these high places can be scary and require a trust in the Lord and his sovereign plan that he has specifically prepared us for, maybe for our good, maybe for someone else’s, maybe both. So, we continue to praise the Lord for the events and situation at hand, reminding ourselves and one another that God is good, he is ALWAYS in control, and we put our trust and Beckett’s life in his hands and his care…not ours. We will commit to being a good steward of all that the Lord has given us for however long we have it. To God be the glory!

#ODAAT
#GoBeckett

— with Leah ‘Whiteley’ Rupp at Riley Children’s Hospital.