Heart of Beckett

UPDATE (8/28/13)

Not much to report (once again). Honestly, Beckett is doing quite well. Last night was a little better than the night before. We were definitely awake numerous times, but it was manageable, and Beckett was responding well to being rocked back to sleep.

We could still use some prayer figuring out a good and manageable routine. Leah had to nap again this afternoon, and I could have easily used one, but this ride isn’t gonna end (thankful…but I think you know what I’m saying). There are no “vacations”, we just need to figure out how to get up to speed with all his meds, appointments, sleep patterns, our jobs, my schooling, etc, etc, etc.

Lastly, I want to mention two more things:
1) Just another heads up (like last time we were home), there will definitely be days where we cannot quite find the time to post. But I assure you that if there is “bad news” to announce, it will be posted. So take peace in the days we are silent…we may merely just be enjoying life and enjoying our son….at home! 🙂
2) I want to remind you all of Beckett’s email address: beckettrupp @ gmail .com (spaces are added to help avoid it from being spammed on the blog). The emails you all have sent are so amazing, and I want to remind you that the purpose is to write Beckett something to either encourage him later in life if/when the scars aren’t making sense, or simply even to share with him what his young life has meant to you. He’s such an amazing little boy, and a slew of emails from you all will be so fun to share with him someday.

You guys are awesome! Thank you for your continual support. Oh, and the meals you guys are beginning to supply for us once again are such a blessing. Thank you so much!!
http://www.takethemameal.com/meals.php?t=ENMX4112

#GoBeckett
#ODAAT

UPDATE (8/27/13)

What a crazy night/day. Yesterday, being discharged, was amazingly similar to the first time we were discharged from the hospital. Ironically, by-the-way, we were discharged this time exactly one month from the day we had to readmit him. Anyways, it was another day of “hurry up and wait”. I got to the hospital early, met with the Cardiologist, got everyone and everything on the same page (because we really needed to be discharged from the hospital by 1:30pm…at the latest). I was scheduled (time-slotted) to conduct my research to nearly 500 freshman students at 3:30pm, and really only had/have one opportunity to get this done. If I missed it, there is a seriously good chance I’d have to almost start over on my Thesis. Well, we were pretty much done with everything (to be discharged) by around 11:30am. They brought us the discharge paperwork, and Leah observed that it wasn’t done right (to later regret even bringing it up), so they had to take it back and redo it. Furthermore, we were shown Beckett’s wean schedule, in which we noticed was way too quick of a wean for Beckett (found out the pharmacist who put it together didn’t know Beckett very well because the primary pharmacist was not working that day). Soooo…..that had to be redone as well.
Uh Oh. (pertaining to my deadline)
Long story short, we waited and waited and waited until I literally needed to leave or I would be late for my research. Truly I would prefer to leave with my wife and son (and would be further annoyed if I left to find out they were discharged 15 minutes later). Well, the nurse overheard me say to Leah that I gotta go, and she called into the room “I got it!” Soooo, we got the new paperwork, packed him/everything all up, and finally left! Yay!!!!

By the time we actually left, I was cutting it close…and of course, It seemed like we were getting caught behind every semi trying to pass another semi (huge pet-peeve of mine). Clearly, I was not going to speed….but I started getting a lil antsy. We actually pulled up to the building I was doing the research in at about 3:28pm (no joke). Leah drove the rest of the way home, and afterwards, I solicited a ride home from a friend I bumped into.
Done. And Done.

Concerning today and last night. Leah, her sister and mother were drawing up all if Beckett’s meds and we realized that the hospital did not give us scripts to 3 of Beckett’s critical meds. Unfortunately we did not catch this until Beckett needed one of them. So, we called the hospital, and I ran up to a CVS that took an hour to fill the scripts. BUT, we got them!

Lastly, Beckett decided he didn’t really want to sleep last night. We had him to sleep by around 11:30pm, for him to only then wake up by around midnight….and stay awake until about 3:00am or 4:00am. At one point, Leah and I just looked at each other and laughed. I mean, there is nothing we can do about it….and we are certainly not complaining. We just said, “today could be an interesting day.” Which it was. Her and I were sooo tired. Classes (for me) were good…but at times really challenging to stay focused. And Leah had various visits from a nurse and even a Medicaid specialist. And Beckett, surprisingly was awake for most of the day again today (somehow)…sooo, very little time for either of us to nap or catch up on our sleep. Hopefully he’ll sleep good tonight…but I guess we’ll see. He gets meds all throughout the night (which isn’t a big deal), it’s just more challenging when you add to that a grumpy baby who is whimpering because he is tired…but refuses to fall asleep. I must say though, it wasn’t anything like when we were home the first time. Beckett would scream bloody-murder all throughout the night then. THIS is much more tolerable. But again, I guess we’ll see what tonight has in store.

Thanks again for all the continual prayer and support. Oh, and if anyone is interested, here is the link to sign up to bring us meals:
http://www.takethemameal.com/meals.php?t=ENMX4112
That feels weird to say (but it’s probably my pride that gets in the way). To not have to think about meals is certainly a blessing, and if you are interested, we are certainly willing to take any frozen meals for later (we got a freezer/fridge combo from someone for free a few months ago…so we do have some extra freezer space). Thank you!!!!

#GoBeckett
#ODAAT

UPDATE (8/26/13)

HOME 2….the sequel

#GoBeckett
#ODAAT

UPDATE (8/25/13)

Honestly, not much to update tonight:

Both my parents were here again (came all the way down from Ohio just for the day!), and spent some good quality time with Beckett. We were greeted with the news that Beckett had a fantastic night last night (which is always music to my ears!). He was just laying in his bed…just cooing and playing. Other than him throwing up a few times today (which weren’t devastating), he was such a good boy today! When he was awake, he played, otherwise he slept (mostly in my mother’s arms). My mom kept saying politely and confidently, “I’ve got the touch.” It was funny. My Dad gave him a few trips around the floor in his wagon…and like I said, we mainly just played and slept.

Soooo, we are just holding our breath concerning tomorrow. We truly don’t know much yet, but what I do know is that a lot will need to perfectly fall into place to make tomorrow a complete success (from my finite mind’s standpoint). We’ll see how it unfolds……either way, “To God be the Glory, Great Things He has Done!”

#GoBeckett
#ODAAT

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

UPDATE (8/24/13)

Not much to report on today:

I pretty much just hung out with Beckett all day. He’s been whimpering a lot, but it wasn’t until later this evening that I remembered they weaned his methadone again yesterday (they really really wanted to), and we might be seeing the first signs of the withdrawal from that wean. But he wasn’t mad all day. We went on numerous wagon rides, hung out in his room, practiced sitting up, we played with his toys, I played guitar for him, played peek-a-boo…..all kinds of stuff. He’s such a smiley/good little boy (most of the time). He usually is only ever mad or upset if there is actually something “wrong”, in which case he obviously deserves to be a little fussy.

As you might have read from yesterday’s post, we’ve been anxious to find out about those goofy little beats Beckett dropped yesterday. Remember, one scenario is bad and the other is acceptable. Well, our nurse told me that the Cardiologist didn’t feel comfortable sharing his thoughts with me about it until he spoke with our Cardiologist. To be frank, that kind of freaked me out. So I tried to text that to Leah (cause she was at work today) in a way that didn’t sound bad or make her worry…but I think I failed because she has been on edge all day about it too. So I decided to just take a deep breath and just wait. So I waited, and waited…and waited some more for the Cardiologist to even come and tell me something. 3:00pm rolled around, and I decided to solicit some clarity. I told one of the nurses at the front desk that I’ve been waiting to hear from the Cardiologist today about an “issue” with my son, and asked if she could page him. She told me she’d try. About 5 minutes later I was told that the Cardiologist had already left for the day and that she was able to get a Resident to come and try to answer any of my questions.
Ooooooo.K.
So up came a Resident in which I proceeded to ask for clarity on their opinion on Beckett’s heart rhythm issue from yesterday, she said she didn’t really know much…and that she thinks they are just gonna wait it out until Monday and talk about it then.
That would have been nice to know.
Again, we are trying to assume that no news is good news…but things like this can be unsettling, and not encouraging to our goal of being discharged on Monday morning at some point. But I guess I’m thankful we are being “better safe than sorry”.

I was also told today that IR (the ones who did his J-Tube), may want to redo his stitches on the J-Tube. The stitches are “loose” and are quite irritable to Beckett. However, IR is off on the weekends, so we have to wait till Monday on that as well.
Oh dear.

So here we are, just kinda sitting on our hands (once again), waiting for Beckett’s withdrawals to start kicking in full-swing (not good times), waiting on answers, making countless laps in a wagon, hoping to go home, yet realizing it could very well be delayed once again. It’s hard not to get frustrated, discouraged, and even angry…..but as I was telling a friend today, perspective really is key. I’m thankful I even have Beckett here with me today to get angry “about” (not at him, the situation). As I continue to say over-n-over, this is clearly not the story for every parent we have met these past 8 months…and we are truly thankful for the struggle, it just reminds me that we still have our son to struggle over……..one step at a time.

Psalm 139:1–4
O Lord, you have searched me and you know me. You know when I sit and when I rise; you perceive my thoughts from afar. You discern my going out and my lying down; you are familiar with all my ways. Before a word is on my tongue you know it completely, O Lord.

#GoBeckett
#ODAAT

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

UPDATE (8/23/13)

Please excuse my brief update. I usually try to provide details that are both informative and engaging….but today I am feeling a little drained. Not because we had a bad day or anything, but more-so the fact that it’s been a long 8 months (almost), and these updates can sometimes be challenging to compose.

Beckett has had a much better day once again today. We hardly had to give him any meds to settle him; maybe a lil Advil and/or Tylenol. Though he definitely had his moments where he got tired and grumpy, it was nothing a lil orajel and/or a wagon ride couldn’t fix. Thankfully Leah was able to actually hold him today and console him that way (in which I heard her whisper while holding him, “I missed this”. That usually hasn’t been working because of the sensitivity of the newly placed j-tube in his belly. She had to be careful, but he certainly seemed to like it (once again).

Two more things:
1) We are possibly on track to being discharged on Monday…which would be awesome!
2) But, they did find some very unique and potentially very undesired heart rhythms today in the telemetry room that could either be signs of a “bad thing” or signs of an “insignificant thing”. Clearly we are hoping and praying for the “insignificant thing”….but we are now waiting to hear back on the overall consensus from the team. Hopefully we’ll know more by tomorrow.

That’s about it. Love you guys! Goodnight!

#GoBeckett
#ODAAT

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

UPDATE (8/22/13)

I was at home (in Upland) this morning getting ready to put in a full day at work, and couldn’t shake just how discouraged and tired Leah sounded last night from the exhausting day with Beckett. I decided to call Beckett’s nurse and see how his night went and she blew me away with how many drugs they had to give him throughout the night just to keep him mildly calm. She explained that they gave him some Ativan last night before Leah even left; after she left, however, he received Benadryl, Tylenol, Morphine, his scheduled Methadone, Lortab (Hydrocodone), and even another dose of Ativan this morning. Un.be.liev.able! And yet he was still angry. It literally brought Leah to tears from both physical and emotional exhaustion. No matter what she tried yesterday, nothing worked. And as parent, that can really do something to you; you can easily feel discouraged from the inability to console your child.

So, as I was saying, I was in Upland and decided to meet with my boss/friend and tell him that I just don’t feel right not being there for Leah today. He agreed and said (something along the lines of), “Ten years from now, you will not regret leaving us on this day to spend time with your family.” Wise man….good man.

So, off I went, back down to Indy once again. As I was pulling into the parking garage at the hospital, I saw the most beautiful woman walking from her car into the hospital, naturally I couldn’t help but whistle and say, “hey there, hot stuff” (nice and cheesy). Yeah, yeah…it was Leah. But it was great to watch her handle a car coming from behind her with a dude whistling at her. Ha…perfect timing. Of course she asked what I was doing there, and I simply told her that I’m on “Beckett Holding Duty”, and that we are going to figure this thing out.

As we were walking up to his room, Leah asked me her infamous and impossible question, “Is Beckett ok?” You may think that question is similar to, “Do I look fat?” In which we men have learned to never hesitate, but quickly, confidently, and with an unrehearsed tone simply reply, “No”. Well, I struggle with this question from Leah. Nowhere in scripture am I guaranteed Beckett will pull through this. Just as nowhere in scripture are YOU guaranteed to live to see tomorrow. I believe that Beckett is doing well, and I truly believe my God can heal (continue to heal) my son….but I have never “been told” how this story will end. I prefer to echo a man’s phrase, in whom I greatly respect who is currently battling cancer, in regards to that question, “He can, He will, and even if He doesn’t”. Kind of deep….but kind of simple. In this particular moment I told Leah that they have ran many tests (x-rays, and echo on his heart, they’ve checked his levels), and everything is normal. He isn’t running a fever….he’s appears to be “ok”. We just need to be patient with him and continue to try to figure this out. She couldn’t help but respond with, “but those aren’t answers”, in which I replied, “they sure are, they are answers that everything is ok”.

Well, as we approached his room, he was awake and kind of playing. He actually lit up and we played with him for a little while until he started moaning and grunting a bit. I asked Leah if I should pick him up (which is usually the golden ticket for him when he’s cranky). Though it wasn’t working at all yesterday, we decided for me to give it a shot. Well….long story a little shorter, he flipped out. He went absolutely bonkers. The nurse came in and started to suggest some medications, in which we refused at the time. I asked Leah if she tried a wagon ride yesterday (they have a bunch of little red wagons here, and Beckett seems to enjoy rides in ’em when we can). She said no, so I said, “Well, we could just be carting a screaming baby into the hallways, but I say it’s worth a shot.” So off we go, and almost as soon as we rolled even a foot outside the room, Beckett stopped crying! Amazing! Leah and I made lap-after-lap until it appeared he was finally getting a little tired of it. We came back to the room, in which, Beckett began to cry again. This time we were informed that our previously inquired suggestion of using orajel for his teething (which was shot down from a resident) was unequivocally signed off on by one of the Cardiologists. So we applied a little to his emerging teeth, and within 10 minutes, he was a brand new baby. Amazing (again)!

In conclusion (at least as of today), our best friends were not narcotics, but rather a little red wagon and some over-the-counter orajel. So Awesome! Every time (and I mean EVERY TIME) Beckett began to get mad, I would try one or both of those solutions (we can only give the orajel once every few hours though)…and it worked like a charm.

Sooo, later on Leah left to go to her younger sister’s first collegiate volleyball scrimmage of the school year. I was glad she was able to get away for a bit while I held down the fort here with Beckett (making lap after lap in that silly little wagon). We were also visited by one of Beckett’s favorite old nurses. They just played and played….he’s such a lil flirt, and when he’s not screaming…he really is such a good/cute little boy.

If you’ve been following these posts the past few weeks, you will be aware that we’ve been struggling with Beckett’s reflux and throwing up. I’m happy to announce that today he only spit up twice and only refluxed less than a handful of times. Though that’s not ZERO, it’s way better than before! I just hope that the spit up continues to lessen more-n-more, and that we hopefully get to go back home sometime here soon.

Lastly, I want to attempt to share my gratitude once again to all of you who soooooo consistently follow Beckett’s amazing lil journey. You are such a blessing to us, and I’m amazed, each time we post anything, as to how many of you are still following……nearly 8 months later!!!! Your kind words, prayers, encouragement, and even financial support…..truly astounding. I literally do not know how to arrange words in such an order that could accurately and sufficiently express our gratitude. Sooo, for now: Thank you, Thank you, Thank you!

Hang in there with us. We aren’t done yet, but are still very anxious to introduce each of you someday to our precious little boy!

Isaiah 30:18
Therefore The Lord is waiting to show you mercy, and is rising up to show you compassion, for The Lord is a just God! Happy are all who wait patiently for Him!

#GoBeckett
#ODAAT

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

UPDATE (8/19/13)

A day filled with many questions and some answers. In just starting this update, I’m already convinced I will not be able to cover everything that went on today, but I’ll obviously try to hit the highlights.

I had many different conversations today with multiple Cardiologists, a Dietitian, numerous nurses, etc etc….to figure out where we are (with Beckett), where we are going, and how do we get there (sound familiar?). I expressed concern that I didn’t feel like everyone is on the same page. I used the example that our Cardiologist expressed an opinion last Friday to slow down on the volume of Beckett’s feedings, yet the very next day the team decided to increase his feedings! I also feel that since Beckett doesn’t appear to be as “serious” (or critical) as he pretty much has been his entire life, that his care (or at least the planning) is not driven, focused and intentional. Yet another week has gone by, and we feel that we have very little to show for it. It is really frustrating, and it seems like whenever we ask to speak with someone about all this (or even something more specific), we are always speaking to someone new, or (no offense) a student or resident; we’ve learned that we have to be intentional in asking to speak with someone specific (like our Cardiologist). So that is exactly what I did today, and we arrived at some answers.

Long story short (because there are many details), we are officially going to do his GJ-Tube tomorrow! Though he is not officially scheduled (he’s an “add-on”), we are prepared to go down this road. A GJ-Tube will hopefully lessen Beckett’s reflux (sooo, less of a chance of choking or aspirating), it’ll give his stomach a break, but it’ll also put him on “continuous feeds” (24 hours a day….just nice-n-slow). This hasn’t necessarily been presented to us as “THE solution”, but rather a “solution” (emphasis/quotation on solution). We are going to try this and hope it helps…it’s not a guarantee, but it fits what I’ve been begging for: forward progress. I feel like we’ve been sitting on our hands for so long, that at least now we are actively doing something tangible.

Like I said earlier, there were a lot of other details I’m missing (like double checking his digoxin level and even a 12-Lead EKG because of some funny heart rate issues from earlier this morning). But with all that being said, we are taking a step forward tomorrow (a step of faith), and trusting that God will continue to lead us.

On a more fun note, we’ve tried taking his therapy into our own hands a little (since we can’t seem to get that message across to them as well….that we want continual PT, OT , & ST for him). Our nurse suggested an ExerSaucer (I had no idea what that was) and we even tried his Bumbo…..and he did both without us helping to hold him up!!!!!! It was awesome! #GoBeckett! I have a video I may try to post….but I’m not sure it turned out the greatest.

That’s about it. One day at a time (#ODAAT). Please continue to pray for Beckett’s complete healing and our patience. We really do love our care we are receiving here at Riley (and everywhere we’ve been for that matter), but at times we just need some extra grace and understanding while also trying to protect and defend the exceptional care for our son. We may have sounded harsh as of late, but I promise it doesn’t fully/accurately reflect our gratitude for all that has been done (and is being done) for Beckett. Amen.

— 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 (8/17/13)

Man, I don’t even know where to begin. After typing out what seems like hundreds of these updates…sometimes it’s hard to know what to say or how to begin. Sometimes it just “flows”, other times it’s like “pulling teeth.” I’m not starting this update with this seemingly unnecessary preface because anything bad has happened today…but rather just trying to find my footing.

These days can tend to be tiring, monotonous…and really, sometimes it’s just “draining” to spend what seems like every waking moment in a hospital. However, today was really good at times and yet, really tiring.

Beckett was either laughing and playing….OR….crying and screaming. And as some of you know, babies have different kinds of screams. Sometimes it’s a scream that symbolizes them just being tired, and other times (at least for me) it feels like there must be something wrong. Well, I’m not trying to say that there is “something wrong” with Beckett, but numerous times today he’d scream so hard (while I’m trying to console him) that doctors and nurses would poke their head in just to see if everything was ok. I’d usually respond with a shrug, or with the question “any suggestions?” Unfortunately we ended up giving him some Ativan this afternoon (last resort), which definitely helped. I finally got him to sleep, but……..our nurse accidentally woke him up. Yeah……it’s hard not to get disappointed by that…but she didn’t mean to. Coincidently, he really never fell back asleep after that. He had some more meltdowns, and really just didn’t sleep much today (so I guess he should technically sleep really well tonight for his nurse).

We are still trying to figure out his feedings/formula. And deliberate if we want to really push for this gj-tube. Please pray for us while we work this out. Moreover, please continue to pray for lil Beckett. He’s such a little trooper, but he’s been really really cranky lately (as I’ve mentioned). He’s been through so much, so he deserves a lil crankiness, but not to the point of discomfort. We just want him comfortable and happy (which he is often…just not as of late).

My Mom and Dad are here again. They’ve been busy with their other grandchildren. You know, they should get some grandma and grandpa time too…cause we’ve definitely been hoggin’ it a lot this year. 😉 So, it’s nice to have them back around.

Oh, and one last thing. As much as I’m afraid to even post this, they did mention that if Beckett has a good weekend, we could be going home as soon as Monday. But that theory involves no gj-tube. So we’ll see how all that/this plays out. One moment and one step at a time.

Oh, and please continue to pray for Leah and I. That we do not neglect one another, that we actively love one another, and fight the urge to be lazy and self-centered at times. In some regards (hospital life, marriage life, family life), we could really use a “second wind”.

……..thanks 🙂

#GoBeckett
#ODAAT

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