Heart of Beckett

— 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.

UPDATE (5/26/13)

Today has been an “ok” day. Beckett has been what’s called tachypneic today where he is breathing kind of fast. As you may know or remember from high school anatomy class, your heart is “connected” with your lung function, and so when breathing is “distressed”, it’s still concerning. His flow on his VapoTherm was recently turned down to 3 liters, unfortunately it got turned back up to 4 today (though his oxygen support has remained strong at 26%).

Everyone is “watching him closely”, as he’s on the verge of doing ok, or possibly not tolerating some of the changes we’ve been making on him as of late. We try hard to not always jump to conclusions that assume any issues he may be having to be directly related to his heart (though oftentimes it is). For example, we think we may actually see a few teeth coming in (not sure though), so some of the irritability may or could very well be contributed to that.

It’s good to have Leah back from work again. I had the privilege to go to the Indianapolis 500 today, which was really cool. However, being in such a concentrated area of thousands of people, very few cellphones were working. This, in addition to simply not being at the hospital by Beckett’s side, did increase the anxiety of the experience….but it was still good to get away for a bit with some friends.

Sooo, it looks like the drama continues. It could be so much worse though, so as my momma always says, “count your blessings.” Beckett is still with us, he’s still fighting, Leah is here, and God is still (and always will be) in control!

#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 Children’s Hospital.

UPDATE (5/23/13)

Beckett had another good night last night. As we arrived at Beckett’s room I typically ask the nurse some standard questions like:
1) How was his night?
2) How is he doing?
3) Have either the Neos or Cardiologists rounded already?
(and if so…)
4) Are they making any changes today?
5) Etc., Etc…
The nurse informed me that he had a good night, he’s doing well, they’ve already rounded on him, and that there are no changes today. A few minutes later one of the nurse practitioners walked up to our room and said, “Sooo, looks like we will be turning off Beckett’s Milrinone today!” That was kind of a shocker. I looked over at the nurse and she couldn’t help but say, “That’s not what I was just told.” After hunting down some clarity, we were pretty certain that was the plan for the day. Even though Leah and I were fairly indifferent about the decision, it was difficult to ignore that Beckett was just weaned yesterday…so we felt as if he hadn’t really been given a chance to adjust. The Cardiologist came up to talk with us and explained why they made that decision, but also wanted to make sure we were comfortable with it. He explained that Beckett is on such an incredibly low dose of the Milrinone now that, in theory, they feel as if they pretty much weaned it yesterday when they turned it down to .06 He advocated that he thinks Beckett is ready, and that they would like to proceed with the wean. After reaching a consensus, the nurse reached over and just turned off the pump. It was kinda like…whelp, here we go.

Additionally, the Cardiologist mentioned that the weekly Cardiologist/Surgeon meeting that usually takes place on Friday mornings is happening later this afternoon. However, he then said that we probably still won’t hear what they decide until first thing tomorrow morning. Sooo, we wait (you’d think we’d be good at that by now…..but it’s still difficult)…

On a bit funnier/sad note (I bet you never thought those two words could/should go together), Beckett’s Pharmacist put together a projected weaning schedule tailored specifically for Beckett to be taken off the Methadone (a pain med) that he is still on. His best guess is anywhere between 30 and 40 days……yikes! Well, I guess they are beginning to learn Beckett a little better. And on top of that, that weaning schedule was suppose to begin this week, but hasn’t yet due to this Milrinone wean. Sooo, sad but kinda humorous (in a shake your head in disbelief kind of a way).

Here we sit, again, in Beckett’s room just watching him sleep (/heal ;-)) and taking it one step at a time, understanding more-n-more each day how precious life is and how thankful we are for yet another day with our amazing son!

Goodnight y’all….please pray with us 1 Chronicles 16:9-12
Sing to him, sing praises to him; tell of all his wondrous works!
Glory in his holy name; let the hearts of those who seek the Lord rejoice!
Seek the Lord and his strength; seek his presence continually!
Remember the wondrous works that he has done, his miracles and the judgments he uttered.

#GoBeckett
#ODAAT

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

UPDATE (5/22/13)

Soooo, our day began this morning at around 2:00am. Leah woke up with extremely painful abdominal cramps. At one point she actually said to me, “If I was still carrying Beckett right now I would think that I’m going into labor”; except this time she said the pain didn’t come in waves (like contractions), it was just constant. Off-n-on we constantly contemplated taking her to the ER, but it was so difficult to judge how serious it really was. So I did all that I could to calm her down by rubbing her back, her stomach or head. Occasionally it seemed to work, and eventually we both fell back asleep at around 4:30am. However, about a half hour later it came back with vengeance. Leah eventually said that even if this goes away within the next few hours that there is no way she can drive 2 hours to Fort Wayne and work a 12 hour shift in an ER with this little amount of sleep (or highly disturbed sleep). I agreed with her and encouraged her to call in at work. So she did and I ran out at around 6:00am for some over-the-counter meds and a heating pad. I finally found a 24-hour Walgreens (after first striking out a few times), bought some stuff, and rushed back to get it to Leah. Thankfully it seemed to help….but this was certainly not how we planned to spend our night or evening. However, today turned out to be another “good” day for Beckett, and it was nice to have Leah here again with me. She is definitely doing better than earlier this morning, and as cheesy as it may sound, I’m just thankful it didn’t turn out to be something much more serious.

They officially weaned Beckett’s Milrinone (his heart med that he “needs” to come off of) from the small amount of .17 to .06, this is hardly anything which is an encouragement to Leah and I that we think he really can eventually come off it. We are, however, anxiously waiting for the Cardiologist/Surgeon meeting on Friday….not much else matters at this point until we hear what they determine is the wisest and best course-of-action for Beckett.

Hope you’ve all enjoyed the pics we posted today! Beckett has been so lively lately, and it’s just super cute.

#GoBeckett
#ODAAT

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

UPDATE (5/21/13)

Beckett has had a good day today. He slept a lot, and even did “tummy-time” this morning (for some of you men out there, that’s when the baby sleeps on their tummies ;-)). He cooed and smiled a lot today and just behaved really well.

Leah and I went down to the hospital lobby where they had a “Hot-Wheels Exhibit”. We were able to pick out a hot-wheels car, color it, and even package it up in official packaging. It was actually really fun. It was nice to get out of the windowless room for a little while…

We did request for an x-ray for Beckett today because he just seemed to be breathing a little heavy. Rather than Leah and I really thinking something was wrong, we more-so just wanted to confirm that his chest/lungs/ heart all still looked ok. And sure enough, they do! He just hasn’t had an X-Ray for a few weeks now.

Also, he weighs 13 lbs and 4 ounces! That’s awesome! We are very pleased about that. Cardiology was thinking about weaning his Milrinone today because it sounded like he had a really good night last night. However, even though he had a “good night” last night, if you recall from yesterday’s post, he didn’t have the greatest afternoon. So after I politely brought that up, they decided that they will wait another day until they try anything with him. Also remember, we are waiting anxiously for what the Cardiologists and Surgeons decide on Friday morning. Not only will we know more at that time, we were just told that they are going to try to put together another “care-conference” sometime next week (Monday or Tuesday) where we can get “everyone” together again to figure out where we were, where we are, and where we are going. This will be a good thing and something we are very excited about.

Leah is going to be working again tomorrow, so please pray for her to have a good day, safe travels, and for Beckett to “behave” 😉 so that she doesn’t have that to stress about.

Thanks everyone! Love you all!!

1 Peter 5:10
And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.

#GoBeckett
#ODAAT

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

UPDATE (5/20/13)

I know I played a mean joke in last night’s post, so today I promise not to do that. As we approached Beckett’s room this morning, they had already begun the echo on his heart. We stood outside the room and observed that his oxygen support has increased from 30% to 55% overnight. He was tolerating the echo, but definitely not enjoying it. The Cardiologist happened to be in our same module, but with another baby. We then watched the echo technician slowly get up, walk across the room, speak to the Cardiologist, and shortly after the Cardiologist was conducting the rest of the echo. In our experience, this usually isn’t a desired gesture.

The Cardiologist finished the echo, stepped out of the room to address our concerned faces. He explained a few things he saw and used words we’ve heard before. He explained that his heart function wasn’t bad but just mildly decreased. He’s concerned that the narrowing of his aorta may still be an issue. That was something they repaired when we first got here over a month ago. However, due to the location, they can’t fix it in the cath lab…which means they would need to “go-in” more invasively. If that’s the case, he explained, it may be prudent to begin conversations about doing his second surgery sooner rather than later (which a “date” was intentionally left vague). This would allow them to do the next stage as well as fix the aorta all in one surgery.

Though the news this morning was not necessarily disturbing, it wasn’t quite as encouraging as yesterday’s report. He explained that Beckett isn’t a “problem baby”, but is a baby they need to start having more frequent and serious conversations about. He shared with us that the Cardiologists and Surgeons meet every Friday morning, and that he will definitely be brainstorming with the team this Friday as to what may be the best course of action for Beckett.

Sooo….that was our morning. Leah was going to try to work today, but unfortunately it didn’t work out. Some of the options now are to work shorter shifts and drive to Ft. Wayne more often, OR possibly miss seeing Beckett for the day and spend the night at home in Upland (which she has yet to do). We have been very grateful and thankful to her work for being sooo accommodating these past few months, but kind of in the back of our minds we couldn’t help but think that unfortunately this surely won’t last forever. I’m not a big fan of her on the road so much, so this begins to make us think of alternative plans…everything from me possibly looking for some more work to relieve the burden on her shoulders (which I’ve never been comfortable with her carrying), or it could even force me to slow down on my grad school progress, etc etc… So as you can tell, we would appreciate prayer in this area of our lives as well. This situation This is has just unfolded into what it is now. We hoped to be home months ago, and that clearly wasn’t what happened. So then we set a goal for me to just finish the semester. But now it’s hard to know how to best proceed when we cannot predict what the future holds for us and Beckett. This places us in an interesting predicament when thinking about this journey from the standpoint of “one day at a time”. We are trying to be wise and good stewards, yet worry about today and tackle each trial as they surface. I have a tendency sometimes on this blog to rant or vent, so if that’s what I’m doing, I apologize. I share with you all because I know you care and will support us through this journey as you all have been so faithful these past many months.

I told Leah earlier this morning before we even got to the hospital that if Beckett is going to withdrawal from the fentanyl wean on Saturday that I think it’ll be either today or tomorrow. Ironically, we have been told by many doctors, nurses and even the pharmacist that fentanyl should reveal any withdrawal side-effects fairly quickly…but even if that is typically the case for most babies, that is not typically the case for Beckett. I’ve heard one nurse practitioner specifically say that she has never seen a wean like this, ever, and will certainly reference Beckett in the future if she should so happen to have anything remotely similar to this again.

Soooo, on to this afternoon. Leah and I came back from lunch and Beckett was sleeping. All of a sudden he quickly woke up crying. We tried all the typical soothing techniques that typically work for Beckett, and none of them seemed to work. That, along with him suddenly waking up in anger, is a fairly substantial clue to withdrawal…at least for Beckett. So Leah then held him for a while and he calmed down. A few hours after holding him, Beckett suddenly woke up again hysterically crying and had a heart rate in the 170s (which is pretty high for him). What was all the more odd was that after we calmed him down he maintained a high(er) heart rate; in fact, it continued to climb as high as 180. I think I kind of freaked Leah out because I couldn’t take it anymore and I left the room to find a doctor. I explained what happened and a doctor came right away. She assessed him and said that she would first like to get a blood gas (basically to make sure everything “internally” is still looking good). Even though that was totally the right call, After Beckett flared up again, Leah and I looked at each other and nearly simultaneously said, “yeah, he’s withdrawing.” So, they did a blood gas and the first one came back all out of sorts (which happens sometimes), and all the numbers were way off. So she had to do it again. In the meantime Beckett is screaming and crying and racing his heart rate into the upper 180s. We patiently waited for the results of the next blood gas which showed great numbers and the consensus was finally made to give him some morphine. Though I believe the morphine was ordered, delivered, scanned, double-checked, and administered as fast as they could….it felt like it took a half hour or longer while Beckett was off-n-on in hysterics. Finally he got some morphine, and another half hour later (once it finally fully hit his system) he began to settle down. He went to sleep and Leah and I were able to run away real quick to grab some dinner. We returned to him sleeping well, but within a few minutes he began to wake up again and start crying again. The consensus: He’s withdrawing pretty hard from the fentanyl.

We know that withdrawing is inevitable, but the combination of that emotional distress along with receiving potential news that he may be having the second surgery “sooner-than-later” was a lot to stomach. I’m actually glad Leah didn’t end up working today, cause it was great to have her here with me. She is such a champ when loving on Beckett. She just seems to innately know exactly what to say, what to ask for, what to do to help better his care. Even most of the physicians around here sometimes resort to asking her what she thinks about certain scenarios or solutions. Now don’t here me wrong, they are certainly still the professionals…I guess I’m just saying that her opinion is highly valued and respected.

I will say that this evening is concluding with Leah just holding Beckett and “all seems well.” I had already actually posted last nights update before Beckett’s Bath-Time and almost reposted an addendum to my update because Beckett was a riot last night. He was making the most endearing and cutest little coos. I also snapped a lot of great pictures (I’ll have to post some soon…they are sooo good).

Well, as always, thanks again for hangin’ with us….as you can tell, we are far from “finished” and definitely have a ways to go on this journey. We are just asking for continual pray, support and cheers as we do our best to not only eventually finish strong, but endure strong!

#GoBeckett
#ODAAT

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