Heart of Beckett

UPDATE (6/5/13)

Another good day!! Yay! However, we were told that Beckett had a challenging night last night; not necessarily from a “health” standpoint, just more-so fussy than anything else. As I began to write this update, I spoke out loud what I was getting ready to type, which was, “Beckett had a bad night last night.” However, the nurse who had Beckett last night also has him tonight and heard me say that…she couldn’t help but correct my description of her evening with Beckett. lol She said, “It was NOT a bad night!!” I may have only really been saying that to get a rise out of her…..and it worked. 😉 So, no…Beckett did not have a “bad night” last night, it was a little challenging and he was a little grumpy.

On that note (kinda), we really have come to appreciate and be thankful for the care we are receiving here at Riley. We DEFINITELY miss our St. V/Peyton Manning family, but we have always been blessed with great care. Yes, big and small mistakes have happened….but you know what really matters??…Beckett is sleeping beautifully in the arms of my wife right now after cooing during his entire bath. Yeah, we are still in the hospital. Yeah, we definitely wish we were home. But as Leah has stated before, “If it meant spending a lifetime in a hospital, but it meant keeping Beckett, that would be our new life.” Amen.

I was back in Upland (@ Taylor) all day today for my internship, so what I am typing is second hand material. I’m being told that Beckett had his Echo this morning and that Cardiology said that his heart function actually appears to be a little better! What?! That’s awesome! Now, he did say “a little better”….but shoot, we’ll take “a little better” over “a little worse” or even “looks about the same.” Sooo, this is great news!

Therapeutically, I was told that he sat in his chair for a while today, and that he apparently is developmentally up-to-speed with what’s called “transferring”, where he can transfer one object in his hand to his other hand. So, that’s awesome too! We, and they, are very pleased with his progress.

On to other good news:
Way back in February, Beckett potentially contracted MRSA. It apparently may not have even been a legitamite swab, as in, we’ve been told it may have actually been contaminated. His MRSA never went septic, and ever since all of that we were put in isolation where we have to wear these goofy yellow gowns and purple rubber gloves. Technically, Beckett wasn’t allowed to feel the touch of skin from our hands since then. Sooooo, Leah decided to ask if he is missing out developmentally from not feeling our actual touch…skin-to-skin. Our nurse then passed her concern along, and we then heard back this morning that since we are his parents, as long as we wash our hands thoroughly before-n-after we spend time in his room, we no longer have to wear the purple gloves!!! This is great news! Maybe more great than I can accurately describe through this update. We are truly very happy about this. Furthermore (yes, there’s more), Infectious Disease agreed to do another swab of Beckett’s nose and see if he has MRSA anymore; if he does not, we are Isolation FREE! That would be absolutely fantastic!

Lastly, a running joke around here at Riley since we arrived here back on April 10th is if we will still actually be here in the hospital when their NICU floor moves to their new building they call “The Tower.” We’ve been told its amazing over there. Well, being that they move on June 19th, it appears as if we will still be here. 😉 Well, Leah and her mother got a tour of the new facility earlier today. She confirmed that it really is nice! Apparently the official tours for non-medical personnel begin tomorrow, but we are pretty much medical personnel now. Obviously I am kidding, but they did ask if Leah and her Mom wanted to be the guinea pigs for the tours tomorrow. Anyways, just thought I’d share that with y’all.

We continue to take great, yet subtle, strides forward. My mother shared with me some great scripture this evening I must pass along to conclude this post. Please read these words, they are very powerful! Thanks everyone! #GoBeckett!

Psalm 145:13b
“The Lord is faithful to all His promises and loving toward all He has made”

Psalm 145:1-3
“I will exalt my God the King; I will praise Your name forever and ever! Everyday I will praise You and extol Your name forever and ever!
Great is the Lord and most worthy of praise! His greatness no one can fathom!”

Psalm 92:1-2
“It is good to give thanks to the Lord, to sing praises to Your name, O Most High; to declare your steadfast love in the morning and Your faithfulness by night”

#ODAAT

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

UPDATE (6/3/13)

Another good day! Spoke with cardiology this morning, and we are still looking good. It looks likes they want to do another echo this week, and then the cardiac cath sometime within the next few weeks (same story). They want to wean his Vapo flow to 2.5 tomorrow, then to 2 on Thursday and maybe do an MRV on Friday (if everything goes according to plan). We haven’t touched the methadone in well over a week….turns out the focus right now is on the VapoTherm and trying to get him off it. Being that it is currently looking like we may be just staying for the second surgery (and not going home at all), there just isn’t a huge rush to get him off the methadone. Vapo is priority.

Leah came back today. It is great to have her back. Before she got here, however, music therapy showed up and played guitar and sang for him. Beckett loved it!!! He wasn’t sure at first, but after a while he was kickingl his arms and legs and cooing right along. I actually got some video of it, but it was before he got really excited, it was while he was still kinda figuring it out. Unfortunately my phone ran out of space. The music therapist LOVED Beckett’s reaction, she said that she’d like to come 2-3 times a week if we were ok with it, and would also like to know if we were willing to fill out a release form to record his response (being that it was so dynamic). Of course we loved that idea and are eager to have her back.

He gained a little more weight again (that’s almost always good news). They are, however, going to slow down his calorie intake because of how quickly he’s gaining weight. They would like his length to catch up to his weight before they push his calories again. He’s starting to get a gnarly double-chin like his dad. 😉

That’s about it. Thanks y’all. Have a great night. I hope this updates continue to get more-n-more boring. God is still good (#rhetorical), and we are so thankful for how far we’ve come!

#GoBeckett
#ODAAT

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

UPDATE (6/2/13)

Another good day! Beckett was awake this morning from about 7:30am to about Noon(ish), then fell asleep from around Noon(ish) to 4:30pm (which is an amazing nap!). Leah was at work today but found a little bit of time to FaceTime with us (I love technology!). Beckett actually responded really well to it and looked right at Leah on my phone nearly the entire time….he looked a bit puzzled, but still really cute! Also, earlier today I was told that we may start talking about feeding Beckett real food, like applesauce and other baby-like food. Now, he still doesn’t know how to swallow, so it will most likely go through his G-Tube straight to his stomach, but it’s kinda cool that he might start “eating” “real food” soon! Lastly, the flow on his VapoTherm got turned down today to 3 liters, and he’s handling it really well! Oh…..one last thing: he’s officially over 14 lbs!!! #GoBeckett

To be quite honest, that’s about it. We are just thankful for yet another really good day! And thank you for all the prayers for Leah. She’s almost done with work for a few days and will get to see Beckett again tomorrow! She’s such a trooper, and I’m so proud of her!

II Tim 3:14&15
But as for you, continue in what you have learned and have become convinced of because you know those from whom you learned it, and how from infancy you have known the Holy Scriptures which are able to make you wise for salvation through faith in Christ Jesus.

#ODAAT

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

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

UPDATE (5/31/13)

Today has been yet another quiet and uneventful day. Beckett’s flow on his VapoTherm was turned down to 3.5, and he’s been tolerating it really well. And to clarify, when we’ve talked about his “oxygen support”, aka: VapoTherm, we watch two specific numbers. The “flow”, which, in essence, is the pressure with which the VapoTherm is blowing. The FiO2, or oxygen support, is the other number we discuss often, which is the percent if oxygen in the air flow; 21% is what is referred to as “room air”, which is what you and I breathe, and any number above that is additional support he is requiring. So, these two numbers, the Flow and the FiO2 affect his actual blood/oxygen saturation level, which is directly affected by his heart. Sooo, we watch these numbers closely. Beckett is currently suppose to maintain saturation levels between 70-85; you and I are at around 100…in which after his final surgery at 2 years old, he should be able to hit 95 or so. In theory, we continue to wean him down on the VapoTherm to lower and lower levels of flow and hope that his FiO2 will remain at 21%. Once off of VapoTherm he will be hooked up for Oxygen through the Nasal Cannula (like he is now…it won’t look much different), but won’t need the fancy VapoTherm which heats and humidifies the air. This then is yet another step closer to GOING HOME and also doing another MRV to check on his blood clot that he got in his brain from his cardiac arrest the night after his first surgery during the 45 minutes of CPR. I’d love to hear a status update on that, and we are praying that it’s long gone!

I’m sitting next to Leah right now as she holds Beckett….he’s as limp as a wet noodle in her arms….and it’s sooo cute. He’s now 13 lbs 11 oz, which is great, and they have increased his feedings once again.

Leah said that I must conclude with a funny little story from earlier today. And I must warn you, this story contains graphic material…but I’m not sure how else to properly communicate it:

I try to help out as much as I can with Beckett, but Leah is a diaper (and all-things-medical) champ….I mean, she is a nurse. 😉 So, earlier this evening, I was changing Beckett’s diaper and Leah placed next to me a bottle of Sensicare….which is for rashes and such. Beckett may have had a rash developing around his privates, particularly under his scrotum, so I was wiping it on Beckett, and of course, had squeezed out an excessive amount on my finger to spread. I got it rubbed in as good as I could. I then had it all over my gloves and fingers. I decided to pretend to wipe it on Leah’s face appreciating the forethought of her reaction of disgust, when unfortunately she plunged her head forward for some reason, not seeing what I was already in motion doing. My finger, coincidently, smeared the freshly scrotum-tainted Senisicare onto Leah’s forehead. Though I can tend to be a bit of a prankster at times, this was truly not my intent. We both began to laugh pretty hard (out of shock)…but my laughter was more apologetic, as Leah’s laughter was a bit more of a…..ummm, “I can’t believe you just did that” kind of a laugh. 😉 Anyways, it was really funny, and we were even able to get a picture of it.

Anyways, it’s been another good day (which we will never get board or unappreciative saying). Thank you for your consistent prayers. God is good….ALL the time! Do you truly believe that? We are learning…

#GoBeckett
#ODAAT

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

UPDATE (5/27/13)

I wanna first begin by honoring today, as it is Memorial Day, and not only give tribute to those who’ve served our country (as my Grandpa did and both Leah’s Grandparents), but give respect and appreciate both Leah and my heritage. We’ve come from an amazing heritage that we are very proud to now represent. Thank you Mom and Dad, our grandparents, and certainly our grandparents who’ve gone before us…we hope to make you proud and have decided to relentlessly hold fast to that which we have been taught at an early age. So, I’ve said it before and I’ll say it again…in our Family, we will choose to serve the Lord; he will receive all the praise no matter how hard or how great our situation may get. To God be the glory, great things he has done.

Sooo, onto the main show. Beckett has had a good day today! PTL! We had a good conversation with Cardiology and enjoy working through some details and a good game plan for the immediate future. Basically, rather than giving him rescue doses of narcotics (like morphine), which they had to again last night unfortunately, they are going to try a sedation med (called Ativan), so that we can continue to wean his current narcotic, methadone. It’s a great/better plan, and we were even able to get them to have some kinda “on hand” so that it can be administered a little quicker rather than the nurse telling the doctor, getting permission, waiting on pharmacy to deliver it, scan it, have it “witnessed”, to then finally administer it. They’ll have to do some of that, but are aware of getting him this med to calm him down ASAP, when needed.

He is still struggling with reflux, but we are working through it with him. It’s not that reflux is that “bad”, it just is for him because it really scares him, which makes his heart rate drastically decrease (when choking), then shoot way up, he’ll get all wide-eyed, sweaty, and it’ll take anywhere between 20-45 minutes to calm him back down. This then effects his breathing as well, and his breathes-per-minute will shoot way up as well. He’s ok though. It’s just taxing on him and us, and can get a lil scary for the both of us when he is gagging and desating.

Whelp, that’s about it. I’m heading back home tonight for the start of my summer internship tomorrow (Which, tomorrow is also Beckett’s 5 month old birthday! Crazy, huh?), so, we’ll be back to trying to figure out some sort of rhythm once again. Thank you again for the prayers and support. #GoBeckett!

#ODAAT

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