Heart of Beckett

UPDATE (7/25/13)

Wow….we’re home. This is genuinely surreal. We didn’t really post an official update yesterday, but as you could have possibly gathered from the few statements I posted, there was a sincere threat that we may not actually get to go home. We were packed and literally just sitting in Beckett’s room….waiting….for hours. Needless to say, we were all a little fidgety. Well, I should speak for myself…I was truly beyond fidgety. I don’t know if it was the wait of 7 months culminating down into the final few hours….but my goodness, I was antsy. We had a photographer with us and a few videographers. We were estimated to leave as early as 1:00pm, so that’s when they all showed up. The videographers mentioned that they really should leave to head back home by around 4:00pm….well, 4:00pm came and went, and they stuck around (as-well-as the photographer). Then 5:00pm came around, and we were still waiting on just one phone call from insurance to approve a med. We eventually decided to “call it”, and I walked the videographers to their car. As they were getting ready to pull away, my wife called me with the news that we got approved!! The pharmacy was gonna close in a few minutes, so I rushed to get Beckett’s meds, and we literally strolled out of the hospital! Some NICU nurses met us down in the lobby, and the moment got a little emotional (big surprise, huh?).

Sooo, off we went…on our way home! ….finally. Leah and I kept echoing one another with the phrase “is this seriously happening” (or something similar). As we approached, we were greeted with some friends and family. Once again, it was quite emotional….and amazing!!

So, wow! What a roller coaster of a day. Last night was fairly restless for us. I tried to take over most of the responsibilities in the middle of the night with meds and feeding so Leah could sleep. But Leah certainly helped when I needed it.

Beckett’s been awfully sleepy. He’s actually been sleeping most of the day and most of the night. However, most of the times (not all of the times) once he was awake he’d get awfully mad. He’d be happy, then choke, then gag, and then it would be all downhill from there! Leah and I are trying to not get too worried about it, but it seems to be happening a lot. We’re getting visited by a nurse tomorrow morning, and we’ll have a chance to get any of our questions/concerns answered. All-in-all, he’s currently doing great! Soo, thanks for the prayers, and please…please keep ’em coming!

Another cool little update, our HeartOfBeckett website has only been live for about 6 months, and yesterday…the day we finally came home, we actually breached over 100,000 hits! That’s crazy! Now, that’s not 100,000 people, but of everyone following Beckett’s amazing lil story, we’ve all accessed his site over 100,000 times! Unbelievable!

Lamentations 3:22-24
The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. “The Lord is my portion,” says my soul, “therefore I will hope in him.”

#GoBeckett
#ODAAT

We got it!!!!
….there have been a ton of delays today (very frustrating), but as of right now (Wednesday / July 24, 2013 / 6:45pm), we are officially discharged for the first time EVER and on our way home!! See-y’all soon!

Ok………it’s 5:15pm, and we are still here. I’m currently not in the appropriate emotional state to post this update, but I’ll try with this brief “update”. Basically, we have been waiting HOURS for 1 measly phone call from insurance to sign off on a med we need to go home. We’ve even already signed the discharge papers. Sooo…there is a real chance now that we may not go home today. I’ll keep y’all posted! :-\

UPDATE (7/22/13)

Another good day. Beckett’s saturations were even better today! As I mentioned recently, his saturations were kinda goofy this weekend. Well, he had a nice big cry late last night before I left, which unfortunately prompted a fairly hefty throw-up. HOWEVER, after that…his saturations were great! In fact, they’ve been great nearly all day!

We had another friend visit today (which is always a treat) in addition to some techs delivering some equipment we will be going home on. They had to kinda teach us how to use the equipment and better prepare us for when we are home with Beckett. We were also suppose to have a car seat study for Beckett earlier today (which tests if he can even maintain his saturations when in a car seat for numerous hours. That got bumped to later this evening here, so we certainly hope Beckett passes that with flying colors.

A few more things:
1) Don’t you think you want Leah to write one of these upcoming Updates? I mean, I’ve been told by well-meaning friends and family “we really do like how you write, Jonny. BUT when Leah does it…wow! It’s amazing!” In which I reply with a proud and confused “thank you”. 😉 Anyways, just post back if you’d like Beckett’s mother’s perspective every-once-in-a-while. 🙂
2) Just to give some of you a heads up who might be interested in something like this…a new friend of ours is putting together a lil “meal schedule website” for us where (I think) you can sign up for days and times to provide us with meals. It’s kinda weird and awkward for me to be advocating this for us here on Facebook and our blog….but I know that would be something very practical and helpful for us once we get home. Sooo, if that’s your “cup-of-tea”, we would welcome your gift of nourishment.
3) Though I don’t take back anything I mentioned yesterday about people coming to our house to welcome us home (in fact, I want to encourage it all the more and welcome you to spread the word)…I did want to clarify that we probably won’t have much time to chat or even “show him off”. We will probably just take him inside right away (cause the heat isn’t that good for him yet), and we don’t really have that big of a house. We appreciate your understanding and fully acknowledge that you all probably already assumed all of this to be the case. I just thought some clarity might be helpful.

Whelp, please keep us in your prayers (as we know you have been) as we approach this transition. Please pray everything continues to go smoothly and Beckett just rocks it in the environment of his loving and rightful home!

……..we’re sooooo close!

#GoBeckett
#ODAAT

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

UPDATE (7/21/13)

Today has been a great day, other than the fact that Leah has been gone…her boys need her back! Beckett has been in a pretty good mood pretty much all day. There is one thing he had been “struggling” with the past 24-48 hours though. You may recall that he got behind on his Lasix a little when we were first transferred here to the heart center. Well, we’ve been trying to figure out why Beckett has begun to desat here-n-there to the 50’s when he’s sleeping perfectly sound. That’s pretty low. He always recovers, but it has been concerning to me (and the nurses). However, I should clarify that it hasn’t been that concerning to the cardiologists….so we should definitely find some level of peace in their steadfast demeanor concerning this little issue. Additionally, I have explained recently that Beckett has been withdrawing since the wean of his methadone this past week. Another viable option the cardiologist proposed is some mild discomfort still. Sooo, another thought when he becomes agitated is to introduce (or reintroduce) Ativan to Beckett. We tried it this morning, and it seemed to work well. It isn’t a narcotic (which is nice), but more-so just a drug typically used for anxiety….it has a calming element to it. Certainly we don’t want to use it too much (or ever, if we don’t have to), but we are thankful that it seems to be a good solution to a more successful and smooth wean of Beckett’s methadone over the next month or two.

On another note: I went golfing today! An old friend from my hometown took me out for 18 holes today, and though I played horribly bad, I truly had a great time. Thanks Jordan!

We are still on track for going home sometime this week. We are currently looking at possibly Wednesday, and possibly sometime in the afternoon (clearly, any of this can change at any moment). They still want to do another X-Ray, another Echo, they need to do a car seat study (which I think will be tomorrow), we need to go through some more training, we need to talk to the home care people (I think on Tuesday), and I think we are going to do a night of “parent care” one of these next few nights (where we sleep over with Beckett, administer all his drugs ourselves, mix and fortify his milk, etc). BUT, all this action means we are definitely getting close!

I’ve been wanting to address this for a little while now, but haven’t been sure as to how. I’m not necessarily advocating for a big extravaganza, but I did want some Uplanders (and whomever else would like to come) to feel invited to welcome Beckett home to our house. It situation may be short lived, but if you wanted to be there at/around our driveway while we pull in to celebrate with us as we walk him into the house, you’d be more than welcome. If nobody showed, no offense would be taken (as it most likely will be in the middle of the day sometime), but I’d be willing to post on Facebook and the website as we are leaving Indy so a projected time could be better assumed of our arrival. Again, not a big deal, and I assume we’ll just take him right inside to the air conditioned home, but it will definitely be quite the special moment for us! Message me, text me (if you have my number), comment on this post, or whatever you want to do if you think that would be something you’d be interested in.

Again…..we are sooo close. #ODAAT

#GoBeckett

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

UPDATE (7/20/13)

Pretty uneventful day, but also had a profound revelation/reminder:

Not much happened today. Leah left for work this morning, I held Beckett for a while, he “behaved” quite well from a medical standpoint, and the realization that we might actually be going home in a few days literally gives me the chills (in a wonderful way)!

We did have a visitor today, another friend from my cohort at Taylor University. I tell ya, Leah and I have the best support system ever!

Additionally, a group of us from college still get together once a year…..and, well, that was today. I told them that we fully intend to hopefully make it next year. Castle forever!
(sorry, I just had to give my “shout-out”)

I was reminiscing earlier this morning while just sitting and holding my sleeping son how remarkably blessed I am. Now, before you possibly check-out on me, I ask of you to hear me out. I was just looking at my peaceful son’s face and was reminded of a young boy (among many families we have been introduced to over the past 7 months) named Beckham. Beckham’s birthday was also in December 2012, he also has HLHS, and had his first surgery (the Norwood) on January 2nd, same day as Beckett’s. We were introduced to Beckham and his family over Facebook, so I have yet to actually meet them. I decided to hunt down their blog and see how he was doing. After perusing their website, I quickly discovered that they went home after that first surgery in about 7 weeks. However, in April they had to admit Beckham back to the ICU in which he went into cardiac arrest and had to have CPR for nearly an hour while being put on Ecmo. Beckett went into cardiac arrest 9 hours after his first surgery, had CPR for about 45 minutes, and was on Ecmo for 9 days. Nine days after Beckham was put on Ecmo, he too came off (it’s almost eerie how similar and yet different their story is to ours). Unfortunately, Beckham had “substantial” damage to his brain. They are actually back home again (as of June), but the climax of this story is that Beckham is currently categorized as not a candidate for the second surgery (the Glenn…the one Beckett just had). This means, unless he begins to respond “more” neurologically, he only has another 4-6 months to live because they will not proceed with the next surgery. I’m not sharing this story to be depressing, but to show how fragile these HLHS kids really are…at any state…but to also ask for you to lift this family up in your thoughts and prayers. Furthermore, this enlightenment surely provides perspective for our personal journey, because as difficult as it has been, I was overwhelmed earlier today with gratitude. My son is a miracle…but honestly, so his Beckham. Beckham is still fighting his own battle, as Beckett has his, and God has done mighty things through both these boys lives.
http://beatsforbeckham.com

I’d like to conclude with a real “concern” and prayer request. A few of you have inquired as to what we’d specifically want prayer for, so this is what I’m asking. Balance. I don’t necessarily believe that I will eventually obtain perfection in this, but I am asking that I will earnestly seek a healthy balance for when to protect and when to challenge my precious lil Beckett. I want to quickly learn where lines need to be drawn, and when lines need to be smashed. Please keep that in mind for me personally. I want to be a great Dad, and I want to be a great husband. That sounds generic, but its birthed out of legitimate fear of “failure”. Beckett is easy to love, but that doesn’t automatically graduate me into being a great Dad. And as I’ve already alluded to, I genuinely want to pursue my wife and her needs well while properly balancing life. These requests could be applied to any Dad/Husband, but I hope I am adequately explaining this from the subtext of my current situation.

Sorry if this update has undertones of venting or journaling (it’s fairly scattered), because some of this has been me just sharing my thoughts, concerns, and where I’m currently at in this journey. But….thank you for being patient and forgiving with/of me. We are still hopeful for only a few more days of hospital life. #GoBeckett!!

#ODAAT

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

UPDATE (7/19/13)

Soooo, we saw the surgeon again today, he only reaffirmed how good Beckett is still doing. Even our cardiologist spoke very highly of him again today. Not that I’m not a trusting person, or anything like that…but Leah and I have been joking that we feel like they are all just saying all these encouraging things just to be nice. We know that is not true, but with all “we’ve” been through, it’s difficult to not think pessimistically like that. The good news is that we KNOW they really are telling the truth….and it’s sooo crazy!

We are also still “on the docket” to go H.OM.E. on either Tuesday or Wednesday! Sooo, we decided to meet with a Financial Resource Program Coordinator to make sure we are still all “set-up” financially (particularly from an insurance and assistance standpoint) to go home. It was actually extremely intimidating and overwhelming. The lady had pure motives to “advise” and warn us of things to avoid, but the intimidating element is that if we did something wrong or overlooked a particular detail (throughout Beckett’s life, but especially over these next few years), it could cost us thousands to hundreds of thousands of dollars! Needless to say, that definitely got our attention. Sooo, that was yet another thing to stack on the palate of stress….but “what are ya gonna do”. Leah and I can clearly only “do our best” (as cheesy as that sounds), and trust that God is unequivocally in control!

Our house (carpets and sofas and stuff) got professionally cleaned today. We just felt like the fresh start would be a good thing for Beckett and launch “healthy living”. Speaking off, I’ve gotta hit the gym again…these past 7 months have wrecked me….but that’s probably too much information and probably just me venting again (which I can tend to do at times…sorry).

My sister and brother-in-law left this evening to go home. It was great to have them here for the past couple days. We got to stroll around the heart center again, do bubbles, and I forced my poor brother-in-law to proofread my Thesis before I submit it to my supervisor in order to propose! 😉

Hang tight y’all……we’re gettin’ close!!

#GoBeckett
#ODAAT

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

UPDATE (7/18/13)

Another good day today. I’ve got lots of neat little things to share, so here we go:

First, we saw our surgeon again today. He kept saying, “Whelp, he’s going right along with the program.” He was very encouraging, and it was so nice to hear him (of all people) say positive things about my son’s current condition.

Also, we were speaking to one of our nurses today who happened to say, “Beckett doesn’t look like an Ecmo baby”. It seemed like the conversation was just going to proceed after that comment, in which I had to politely interrupt and say, “Wait, wait, wait…what do you mean by that?” She went on to explain that they can almost always tell when a baby has been on Ecmo. She said that there eyes are typically somewhat jittery, they will focus above your eyes…on-n-on-n-on. She just couldn’t emphasize enough how great he looked for everything he’s been through. She said it’s a miracle. Obviously we are thrilled to hear that. But more potent is the fact that it is sooo vivid in our minds that after Beckett was put on Ecmo, it was such a disaster that our surgeon told us point-blank that with Beckett’s cardiac arrest and how long it took them to put him on Ecmo, we will see some sort of permanent damage. So you can imagine when we are told such encouraging things from strangers, nurses, and certainly our surgeon….we just can’t help but give God all the praise. Amazing!

This past week, they decided to wean Beckett’s methadone “a little”. He was on 2.5 mg every 6 hours after the surgery (including many other narcotics in which he is now amazingly weaned off of). To give you some frame of reference, when they tried to wean him off of his fentanyl back in April and May, they eventually had to only do it .25 every 3-4 days (and that was still rough). In fact, towards the end of that wean, they had to increase his methadone each time they would wean his fentanyl. Well, lets just say that this week began with him at 2.5 of methadone, and by Wednesday he was already at 1.9! Well, we tried warning them that you’ve gotta go “slow”, but we’ve learned that most of the time when we have a new team of medical staff, they kind of want/have to learn that hard fact at Beckett’s expense. I mean no offense, but a 2.5 to 1.9 within 3 days is kinda crazy for Beckett. Well, we are beginning to see the signs of this wean through Beckett’s behavior. He is definitely showing most of his signs of withdrawal. It’s not horrible yet, but we felt obliged to say something before they try to wean him again (which they were thinking about doing soon). The greater perspective is that even though Beckett DOES need to get off the methadone, we can actually go home on a little bit of methadone, so there is no huge rush to get him off it ASAP. In conclusion, they aren’t going to wean him again. They have “learned”, and they are watching him closely.

In other news, my sister and brother-in-law are visiting us for a few days. It’s great to have them here, AND my sister finally got to hold Beckett for the first time! That was pretty cool. We also took Beckett on another stroller ride this evening, this time in his own stroller! ALSO, my 13 month old niece, AnaBel, scooted all around the hospital with us as we strolled Beckett along. It was really fun actually. It was just another sniff of normalcy….and it smelled great!

On another note, out bathroom is DONE! Amazing! They actually got it done by today so that it was ready for the previously projected day to be going home (which is tomorrow). We are sooo thrilled that this happened somehow. We are anxious to get home, and it feels great that “everything” seems to be coming together. It’s still looking like possibly next Tuesday or Wednesday, but we are fairly optimistic that there aren’t going to be any more delays. We are soooo close!

And here’s another “shameless plug” or gentle reminder to email Beckett (if you so desire). Refer to some of the previous posts as to why and what his email address is….but the emails we’ve been getting have been awesome!! A big fat thank you to everyone who’s done that for Beckett. I’m sure it will really mean a lot to him someday.

#GoBeckett
#ODAAT

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