Heart of Beckett

UPDATE (8/16/13)

As Leah and I arrived this morning, we were anxious to speak with cardiology about a “game plan”. Even more so, we were eager to talk with OUR Cardiologist (who we knew was on service today). We were greeted by a student and resident who certainly did their best to explain what all everyone talked about this morning about Beckett. It did, however, get to a point where I had to politely ask if we could just speak with our Cardiologist once he got a moment. It wasn’t too much later when our Cardiologist then walked into the room. He is great! He has a charisma about him that just exudes confidence, maturity, experience and humbleness. It’s fantastic. Have I mentioned that we like our Cardiologist?! 😉 Anyways, I basically had to tell him that Beckett’s puking (which has been resulting in choking) just doesn’t seem acceptable to me. He borderline cut me off and said, “It isn’t…(and)…we’re gonna figure this out.” He listened to all our concerns, he left, made some phone calls, had some answers, and before we knew it we were executing a new plan.

Beckett is now on a new formula. Now, this formula isn’t AS ideal as what he was on to treat the chylothorax (that fluid that developed around his lungs that initially brought us back into the hospital nearly 3 weeks ago now), but after consulting with senior dietitians, this was what they decided is the best option to pursue for right now. He was very convincing, and currently, we feel comfortable with this plan.

Beckett also hadn’t pooed in over a day. A concern that I have been bringing up consistently the past day and a half or so. However, we were literally just told that he did a BIG one while we were gone for dinner. Yay! Never knew I’d cheer for something like that.

Moreover, Beckett continues to do well on being weaned off his oxygen. He isn’t completely off (by any means), but we feel like we are awfully close to getting back to where we were when we were home a few weeks ago. Unfortunately we feel like we are still another week away from actually going home…but at this point I’m more tempted to start thinking that way in order to align myself in such a way to be pleasantly surprised if that happens to be an overestimation.

#GoBeckett
#ODAAT

Psalm 37:7
Be still before The Lord and wait patiently for Him.

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

UPDATE (8/15/13)

Wow, I cannot believe it’s August 15th already! Can you?! I think back about how this whole journey began on December 28th, and to think what all has happened in these (almost) 8 months is astounding.

Beckett had some great visitors again today. An old friend of mine from college, who is currently living in China, just so happened to be driving through Indy to the Airport and paid us a visit. I got to thinking, and realized I hadn’t seen this guy pretty much since graduation from undergrad (surprisingly, quite a little while ago now). He is now married with 2 beautiful little girls. We reminisced a little, and simply just caught up. It truly is inspiring to know we have prayers being said both domestic and international. I am humbled yet again.

Beckett had a decent day today. We had to do an ultrasound this morning in which he did “ok”. At times he just laid there, however, he definitely had some moments where he broke down pretty badly. We later received the results if that study to inform us that everything looks fine. That’s great news! Because as odd as this may sound, my initial thought was, “Good….as if he needs something else to be going ‘wrong’.” Please don’t judge me. 😉

HOWEVER, one of the residents then proceeded to try to explain to me that she feels the best thing to do right now is wait on the gj-tube, and maybe do that after we work through this portagin formula (a special formula that he HAS to be on right now, but is making him puke chunks in which he has been choking on). Again, please don’t judge me, but my first thought (in which I didn’t say out loud) was, “WHAT?!?!”. You see, the whole purpose of doing this ultrasound and possibly changing his g-tube to a gj-tube is to help him RIGHT NOW with throwing up such large chunks that he literally has and is choking….not just “cough cough”, but complete blocked air-way. Sooooooo, I mustered up all the politeness left in me and told her that the purpose of doing this gj-tube is to help him RIGHT NOW….not after he’s off this formula and back on something more normal.

(And just for further clarity, this new formula is non-negotiable right now because of that effusion he got which initially brought us back into the hospital. This new formula will help make sure that doesn’t come back. Soo, we have to work around it.)

Anyways…the conversation ended with her telling me that she can now see it from that/our perspective and will reconsider. We will talk about it again tomorrow to discuss what will be best for Beckett.

Well, I feel as if I should be apologizing for these updates because they are typed out with so much emotion…and sometime emotion doesn’t inspire thoughtfulness or mature responses. For that I apologize. I obviously do not apologize for how we are advocating for Beckett. Though we have no intentions to stir up strife, we will speak up on behalf of our son, and certainly try to do it in the most respectful manner possible. To be quite honest, the lady (the resident) I was speaking with today is very kind and we were able to talk it through well. Again, it just gets tiring sometimes when we feel like we are the ones thinking outside-the-box and/or repeating ourselves.

I’ll try to leave this on a lighter note…and I may have already shared this….but Beckett plays the best game of peek-a-boo! I lightly lay a blanket on his face in which he will rip it off with such zeal, it is sooo precious. And his cute little giggle helps add to the “adorable factor”. So awesome! He is such a good and cute little boy.

Lamentations 3:22-23
The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.

#GoBeckett
#ODAAT

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

UPDATE (8/13/13)

A much better day in some regards, yet kind of scary in another.

We had a good conversation with the medical staff in rounds today and got really solid answers from the Cardiologist. There are just some things that still need to be dialed in. Our Cardiologist assured us that there is probably nobody in this building that wants to discharge Beckett more than him, yet his goal is to discharge him in such a way that we are discharged FOR GOOD (well, until his next surgery in a year or two). With that being said, we had a few issues today…

Beckett keeps throwing up. Yes, babies throw up, but for Beckett his spit ups are very traumatic for him. However, what’s all the more scary is that we have had to change Beckett’s formula to a formula with no long-chain fats. This will help his pleural effusion not come back. But this new formula has effected his stools, and his vomit has gotten pretty chunky. Well, we were concerned about this because we were picturing Beckett choking on those chunks during one of his spit ups. Well…..Leah and I returned to Beckett this evening after dinner in which he had just woken up in the lil swing he was in and almost immediately began to spit up. This time, however, it escalated pretty quickly as Beckett’s eyes got huge, he began to arch his back, his face turned purple and Leah firmly demanded me to “Go get someone, he’s choking!!” So I ran out if the room, politely and sternly asked if someone will come into Beckett’s room because my son is choking. They responded very quickly and began to assess him and suction his mouth. It was actually pretty scary for both Leah and I. I think at one point Leah said to me, “Wow, I’m usually pretty calm and collected in emergency situations….I guess it’s a little different when it’s my own son.” So we got Beckett calmed back down and began conversations as to what we are going to do going forward to try to fix this. I think for now they are going to try to go down on the volume of his feeds, but we are hoping to figure out better answers tomorrow.

We are still hoping to go home sometime early next week (I feel as if we say that every week), but if Beckett continues to “misbehave” (no fault to him), it could possibly be longer than that.

I was scolded by Leah for my post last night. You see, I usually try to get her to proofread what I post (for clarity, grammar/spelling, accuracy, and maturity…..she makes me delete things often 😉 ), but last night she had a pretty bad migraine and fell asleep before 10:00pm (which is pretty early for us), and I wasn’t going to wake her to just proofread a post. Well, I don’t think she’s upset that I was being transparent, but I think I came across ungrateful and not thankful for the care we have/are receiving. And I tried to skirt the line the best I could to share my frustrations without being crude/unfair/close-minded. So I should retract a few things I may have said about his care because it isn’t that our nurses and doctors don’t care, I think I just lose perspective at times and am not fair in my “judgement”. So for that, I apologize. I don’t believe it’s wrong to get frustrated, but I do see it as an opportunity to figure out why I’m frustrated and try to work through that situation with a different set of eyes, ya know?

Anyways, that was today. Fairly good…yet really scary! But Beckett is still here, and we have been blessed with another day. To God be the glory. “May You please continue to heal my son, in Jesus name!”

#GoBeckett
#ODAAT

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

UPDATE (8/12/13)

Ok, here we go. I’m only on the second sentence of this update, and I’m already nervous about it. I’m sure many of you are familiar with the expressions, “Wits end”, “Boiling point”, “Breaking point”, “Straw that broke the camels back”….well, I’m sure you are getting the point. I’m nervous because I’m afraid if I share transparently, I may unintentionally dismember appropriate filters I try to use when writing these updates. You see, I try very hard to be open, honest…transparent with this blog. And at times I’ve been graced with perspective that even surprises me. However, I am human, and there are moments when I sway way too far from a healthy informative blog to internalized unprocessed journaling. This may skirt that line to a degree I may not be completely comfortable with. Sooooo, with that ridiculous preface behind us…here we go:

In just a few short hours, we will be able to commemorate the time we brought Beckett back to Riley after only being home for 5 days. It will now be 2 weeks since that morning we decided to call the on-call Cardiologist about Beckett’s breathing. By around 3:00am, we were already packed and heading back down to a place we have come to greatly appreciate yet want to avoid at all cost. If you read Leah’s post, it was a pretty crazy day that kind of spun out of control. Hindsight is always 20/20, but looking back I think we all (the Docs and Nurses included) have learned a lot from Beckett readmission. First, I think he got “over-treated”. It is what it is (and like I said, hindsight is always 20/20), but I truly believe that we could have tapped Beckett’s effusion, Cathed him, diureced him, and been back home within a week. In fact, the Cardiologist who was on at the time projected for us to be in the hospital for days, not weeks. Yet, here we are. Still fighting the same battles…both physical and in patient-care. I promise I am not just saying this to be politically correct (I hope you know my heart by now)…..but we are FOREVER grateful for all the Doctors and Nurse (and RTs) have done for our son since birth. FOREVER grateful! But sometimes it gets soooo amazing exhausting repeating ourselves over-n-over, or getting a Nurse or Doctor who seems to care more about their job than the patient…my son (surely no hospital has a flawless staff…I totally understand that). To those nurses or doctors defense though (kind of), it’s not really fair to them when we’ve been blessed with medical staff who are absolutely amazing (it’s hard not to compare). Either way, that’s not really the point right now. At one point today I was still hopeful (and I’m still trying to be) to going home within the next few days, but as the day unfolded, it isn’t looking that promising. There is a really good chance we may be staying for a least another week. Mind you, patients with Beckett’s heart condition OFTEN go home after the Glenn operation (the one Beckett just had on July 2nd) within 7 days….OPEN HEART SURGERY! We are now approaching 2 weeks (working on 3) for some respiratory issues. For the past 5 days straight, either Leah or I will bring up the same questions at “rounds”…looking for answers:
1) Discharge Goals
2) Weaning Oxygen Settings
3) Reminding them to leave Beckett’s methadone alone (they wanted to wean it again today…unbelievable…see my post from a couple days ago)
4) Diuretic Settings
5) His Feedings (His Formula and Reflux Issues)
6) Med Schedule (realigning it to what we were on at home).
All of this is “heard” and even validated, but then nothing happens. Nothing! In fact, his oxygen support got bumped up today at one point when he was angry, and then nobody turned it back down (until I finally did…oops, I probably shouldn’t do that). You see, if nobody turned that back down, that then gets recorded as his “baseline”, and then we officially “take steps backwards”. The list goes on-n-on. Nobody tried to adjust his med schedule today (we definitely bring that up daily). And Diuretics! This is what we’ve referred to in the past as Lasix. His lungs will get “wet”, and so we have to diurese them. So, again, in rounds today they discussed an x-ray they did again this morning, it looked unchanged from the one yesterday, but the one yesterday looked “wet”, so whatever we tried yesterday, didn’t work. Then they moved on in the conversation. I had to then ask, “Hey, what are we going to do about this?!” They decided to hold off for now…until later in the afternoon, Beckett’s breathing looked so much more “distressed” that when we saw one of our favorite nurses walk by…we pleaded our case with her. She didn’t mess around. Within minutes the entire Cardiology team was at Beckett’s bedside and we were coming up with a plan. The sad thing was, it had to take Beckett’s distressed breathing and a brave/driven nurse to “make it happen.” And we are still waiting on all the other things to happen.

Soooo, here we are…on cruise-control. Not really doing too much. Just racking up a massive bill while heading into our 3rd week of being back in the hospital. I feel as if Beckett found a pocket between “Emergency Situation” and “Proactive Recovery” (…thankful for not being in an “Emergency Situation”). It just doesn’t feel like anyone is taking this “by-the-horns” and getting us out of here. I must give some credit to the Cardiologist though today, at one point he did stop the conversation (during rounds) and said (something along the lines of), “Hold on, we need to figure out where we are at with Beckett, and how do we get him back home.” It was like music to my ears…..yet, very little happened once again today. I know this sounds line complaining….but it’s probably because it is. I’m really trying hard here to cling to perspective, and being thankful that I even have this to gripe about (we should be thankful Beckett is still alive). But I guess that’s exactly what Jesus is talking about in the Gospels when his disciples “spirit is willing, but the flesh is weak”. Or even King David in Psalms that “my flesh and heart may fail, but God is my strength”. Or certainly Paul speaking of being the worst of sinners in 1 Timothy. These are not excuses for me, but reasons. I am weak at times, I can loose my patience, I can loose my perspective….but (literally), I am so thankful for God’s grace!

I know today’s update is certainly not uplifting, but I hope (at the very least) it can shed light on where we need prayer and support right now. And please don’t just pray that everything begins to “work out” for us, but pray that we learn that which we have been giving the opportunity to grow and be stretched by. We pray that we don’t overlook an opportunity to share Jesus with someone, or find the strength through Christ to extend grace, or simply allow God to do whatever it is he’s doing through what seems like another crummy situation. I will not always maintain a good attitude, or a proper perspective….but that does not mean I cannot (or should not) pursue balance in advocating for my son yet communicating out of love and respect.

My goodness…….one day at a time, huh? God, please use us, use me, use Beckett….may you, God, receive all the glory!

#GoBeckett
#ODAAT

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

UPDATE (8/11/13)

Happy Anniversary, Leah! Seven years ago, today, I said “I love you”, for the very first time, to the woman of my dreams. I often share this story by saying, “One year later, I then married her before she could change her mind!” It’s amazing what all can happen in a few short years. We met, got married, moved to Illinois, lived in a basement during our first year of marriage, I worked my “first career” out of that basement that entire first year, she finished up her undergraduate degree, moved to Michigan, we worked one more summer at the camp we met at, then moved to Detroit with no job lined up to help start a church, lived in my sister and brother-in-law’s basement, I began raising financial support to work at the church, Leah found a job AND went back to school for another undergrad degree, I juggled 4 part-time jobs to maintain my commitment at the church, got accepted into grad-school, found out Leah was pregnant, moved to Indiana (Leah’s hometown…sixth address since we’ve been married), was blessed with an amazing son…..and here we are 7 months later, still with a son, still with an amazing wife….what could I possibly complain about?!

“Life” sometimes doesn’t seem fair, but “fair” is not an objective term…it’s subjective, it’s relative. Take a few proverbial steps back, and do as my mother always tells me….”Count your blessings, son.” Wise words. Yeah, sometimes life gets hard….I feel as if I may have earned the merit over these past few months in particular to say that (to a certain extent), but that doesn’t mean it isn’t fair. Allow those “unfair” situations to illuminate that which you should be thankful for; keep pliable to the stretch-marks of perspective, and never compromise your values.

As I was saying, I am amazingly blessed. Today is my six year anniversary in marriage to Leah, and though I did not get to spend it with her, I assure you that Beckett and I celebrated this day in our own way together. He was a hoot once again today. He slept a lot, but when he was awake, we played together, just talked to one another, I played guitar for him (let him try to strum a time-or-two), rocked him back to sleep (multiple times), and just held in my arms what would never have been if Leah wouldn’t have said “I do” six years ago today!

Thank you Leah for loving me, and giving me one of the greatest gifts I’ve ever received. Your love is not expected or deserved, it’s freely given…everyday (and to ME, none-the-less). You truly are a special woman, and even more-so, an amazing mother! Happy Anniversary, Love. May we celebrate many many more!

#GoBeckett
#ODAAT

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

UPDATE (8/10/13)

Beckett is the cutest baby ever. My goodness. I know parents can tend to embody skewed perspectives about their own kid’s “cuteness” (and rightfully so)….but geesh, Beckett is so darn cute! He just flashes the biggest smiles ever, and as of late, he officially responds amazingly well to the age-old game of “peek-a-boo”. It’s great!

So, Leah left this morning for work in Fort Wayne. She left me a list of questions to go over with the Cardiology team during rounds, to which I did. However, amongst it all, I must have missed some fairly pertinent news. They went down on his methadone again today. “Deep Breath.” Here’s the thing, Riley, St. V’s, even Lutheran in Fort Wayne are the reasons we still have our son….but at times it is so exhausting to repeat ourselves over-n-over. You see, when Beckett’s methadone is slightly touched (his dosage, that is), he will respond. Furthermore, he typically has a delayed response. So, it will then be assessed that he is handling a wean “ok”, when in reality, the brunt of it is just about to hit. Coincidently (and unfortunately), the decision will then be made that since he’s handling the last wean so well, we can go down on his dose again. At this point, if this is not caught or dealt with appropriately, the ramifications are only compounded. Beckett will begin to “downward spiral” out-of-control with heavy withdrawal symptoms. Sooo, long story short, I had “a talk” with the on-call cardiologist this evening and the decision has been made to go back up on his dose, sit tight..ready with some PRN doses of Ativan, and wait another day or two before we try anything with his methadone again. Moreover, when he displayed withdrawal systems, it affects his respiratory, heart rate, and even reflux. Well, the two major issues we are (and should be) dealing with are his formula and oxygen settings. And when we play with methadone doses, we just “muddy the water” on if he’s handling a wean on his oxygen support adequately, or is he in mild respiratory distress from withdrawal systems. I hope that makes sense. But either way, I will be discussing this with the Cardiologist tomorrow morning, and I’m confident we will eventually see eye-to-eye on this issue.

Other than that, I restate my first paragraph that Beckett is so cute! If he’s not sweating, throwing up, or irritable (all symptoms of withdrawal…to name a few), he’ll just be laughing, giggling and playing like a champ!

Lastly, please pray for Leah. She is working tonight (once again), and just informed me that she just had a very difficult situation with a baby and that is always very difficult to handle. I only know it was a baby and nothing more cause of course she can’t and won’t say more. My wife is an exceptionally strong woman (in every sense of the word), but working with children or babies in her field might be best explained as her “achilles tendon”, if you know what I mean. Give her someone burnt from head-to-toe, gunshot wounds, or whatever other gnarly thing you can think of…..but not kids. And clearly, our current situation seems to compound the intensity of it all what seems 100 fold. So anyways, please pray for her, please continue to pray for Beckett, and please pray for our continual gratitude and patience.

You guys are the best!!

Isaiah 41:10
Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.

Zephaniah 3:17
The Lord your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love; he will exult over you with loud singing.

#GoBeckett
#ODAAT

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

#Surprise / #Early #Anniversary (In A Hospital)
My wife has blessed me with a son who happens to only have 1/2 a heart, yet our family is now more whole than ever!
Happy Anniversary Leah!

UPDATE (8/7/13)

Soooo….shortest update ever:

Leah has a really bad headache, and I’m somewhere in Indiana with little-to-no signal. With that being said, Becket had a GREAT day! He officially got move up to the Heart Center floor, which is definitely a sign of continual progress…..progress to going BACK home! I think it’s currently still projected to happen sometime early next week in which we are very thankful and excited about.

Thank you all (AS ALWAYS) for your continual support and prayer! We still need it…and still want it. This next chapter will certainly have it’s challenges, but we welcome those challenges…as it involves Beckett finally be home! I feel as if that should conclude with an “Amen”, yes? 😉 AMEN!

#GoBeckett
#ODAAT