Heart of Beckett

UPDATE (7/17/13)

Ok. Beckett continues to progress, but at Beckett speed. Yes, we are still on track to going home (which we are still thrilled and yet freaked out about), but most likely not until sometime next week (hopefully early next week).

Though we weren’t expecting this, we were hoping to possibly come off of oxygen support by the time we go home. Well, it doesn’t appear that will happen; I guess it still may, but I doubt it. Beckett’s flow got as low as 1/16 of a liter flow yesterday, but unfortunately when Beckett gets mad he desats pretty hard and needs a little extra oxygen support to fully recover. He is doing better at recovering, it’s more so that he sometimes needs the extra help from time-to-time. Oh well, I’ve been telling Leah that the healthier perspective may be that at least we will have some oxygen at home for when he needs it, as opposed to going home with no oxygen and then needing to go find professional help if he’d ever happen to need some extra oxygen support while we are at home.

They are really working hard right now to increase the volume of his feeds. He’s handling it ok, but he still throws up every once and a while…which seems to concern everyone that he isn’t handling the extra volume. All-in-all, though, they have increased his volume some….sooo, he must be doing somewhat decent with the increased feeds.

Leah, her mom and I got out today to rummage sale shop. It ended with us shopping for some clothes for Beckett. It was actually pretty fun….but expensive! By the end of the day, it really added up! lol Though we didn’t go crazy with it, we felt like Beckett “deserved” some new “going home clothes”….and he’s only been getting bigger. He’s such a cutie though, you can tell that the heart center nurses are already starting to fall for those big brown eyes! 😉

Stay tuned for more “H.O.M.E.” updates! We’re getting close!

#GoBeckett
#ODAAT

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

UPDATE (7/16/13)

Another great day again today. At one point, the flow on Beckett’s oxygen was turned down to 1/16 of a liter (that is sooo small, it’s amazing that’s even a setting on the valve). However, it didn’t last too long because they had to redo his dressing again (unfortunately) on his PICC line, and while he was crying and sweating sooo hard from that, he sweat out his sub-q port in his thigh for his lovenox shot. Sooooo, then…that had to get put back in; eventually, he just needed a little bit more support. But it was only increased to 1 liter and is already back down to 3/4 of a liter.

We were told today that even though the option of going H.O.M.E. this weekend is not out of the question, it is looking more like it may be sometime early next week. They would prefer to increase the volume of his feeding a little bit more before we leave (though it’s not necessarily a requirement), and every time they’ve tried he hasn’t really tolerated it amazingly well. As you may know, Beckett struggles with reflux, so an increased volume is definitely going to have an effect on him. In fact, I just stopped typing this post for a moment and he threw up again just now. I know, I know…all babies spit up, but it’s just a little different for him. It can really effect his breathing, which can really effect his heart rate, etc, etc. He is “handling” it better and better. As in, he recovers with his saturations fairly quickly, and even cries much less. He’s a fighter, and he just fights right through it. #ProudPapa

Well, that’s about it. Oh, other than our home repairs. I THINK it’s getting finished up either today or tomorrow. This is amazing to me. I definitely, at one point, was fairly convinced that this wasn’t going to get done in time. Let’s just say we have the most amazing family and friends. Thank you everyone…we are sooo blessed!

#GoBeckett
#ODAAT

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

UPDATE (7/15/13)

Another great day!

As I sit here typing out this Update, Beckett is crying after just throwing up. I’m trying to look past this isolated incident and recall how calm and relaxed he has been for the vast majority of the day.

Beckett had Physical Therapy and Speech Therapy today. He handled the Physical Therapy ok, but Speech Therapy did try to feed him Applesauce, and he was not having it! He threw it all up and didn’t really enjoy it. We then changed some of his dressings, and I actually got to remove the steri strips off his incision today! Yikers! My wife is the one in the medical field, I’ll stick with business, electronics, ministry and higher education….not the medical stuff. (I am being slightly facetious at this point) It was actually a really cool experience. I sent Leah a picture (cause she wasn’t back at the hospital yet) and told her that I almost passed out (again, just kidding…but she understood why I would say that). His chest/incision is actually looking pretty good. It still needs to heal some, but I’m quite happy with how it’s closing up (but please pray for no infections!).

We also had some visitors again today. We love visitors (as long as you’re healthy ;-)), and Beckett does too!

I spoke with the Cardiologist today (he just so happens to be the one who did all his Caths), and he was beaming. He said that Beckett was looking sooo good! I reminded him of the time he did his second Cath and Beckett’s pressures were a little questionable. It was really neat reminiscing on this side of things. He said that we are definitely still on track for possibly going H.O.M.E. later this week or sometime early next week. I think they just want to watch him have multiple flawless days in a row….and then we’ll get the green light!

Whelp, I paused myself for a few minutes in writing this update to just hang out with my beautiful wife and precious son. Quickly after his “throwing up”, he recovered quite well and just started cooing like crazy…it was awesome. He is totally the cutest lil boy ever! I couldn’t be more proud. It brings me to tears every time I think about how far we’ve come and all that he has fought through. My goodness….to God be the glory!

And lastly, I can’t encourage it enough…please feel free to keep emailing Beckett (please reference the past few updates as to why and how). The emails are amazing, and so encouraging for us to read! I can’t wait until Beckett gets to read them. I did, however, play a mean little joke on Leah again tonight concerning these emails. We were eating out and I flipped my phone her way and asked if she would like to read some of the emails we’ve been getting for Beckett. She, of course, said yes. However, she looked up at me about 10 minutes in to ask a question about one of them and had huge tears in her eyes! I couldn’t help but laugh (but in a “aww, how cute” kind of way). She began to laugh too and asked, “You couldn’t offer for me to read these when we weren’t in a public place, could ya?!” It was funny! Soooo, again…keep ’em coming – we are really enjoying this!

#GoBeckett
#ODAAT

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

UPDATE (7/14/13)

What a great day….other than the fact that my parents had to leave early this morning to go back home and my wife had to officially go back to work. She’s such a trooper though. I did get to FaceTime with her today as Beckett was in a very calm and peaceful mood.

Speaking of, Beckett has been in a much better mood today! He was smiling and cooing at whomever came into his room. He is sooo cute….it’s amazing! Cardiology ordered an extra IV dose of Lasix, and I think he’s responding really well to it. The Lasix gets excess fluid off him, and it really helps with his breathing. However, overall, they need to maintain a balance because there is a “thing” such as getting to “dry”….and we don’t want that either. Soooo, another good day…definitely a step in the right direction (but I can’t wait for my wife to come back to us boys!).

In other (amazing) news!:
My cousin’s husband, Scott, in addition to her other cousin and Father-in-law were able to tear out our tub and put in a new one (the whole thing is probably 80% or 90% complete). We have some amazing other friends currently willing to try and finish it off for us by sometime tomorrow. I mean, my goodness…it’s sooo humbling to watch people gather around and help us out for this seemingly insignificant need. It’s a huge blessing, and will be such a burden off our shoulders to know we are bringing our son home (whenever that is) to a clean and functional house. We are so blessed!

Stay tuned. I’m sure there is more exciting “H.O.M.E.” news on the near horizon! Oh, and keep those emails coming. I’m thinking about adding some sort of incentive to overload Beckett’s inbox. I love this idea…and those of you who have participated have been such a blessing with your kind and encouraging words (again, if you don’t know what I’m referring to, just reference the past 3 posts, or so). Thank you!

#GoBeckett
#ODAAT

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

UPDATE (7/13/13)

A very uneventful day…

Our evening concluded with a mini “scare” that Beckett might actually have the onset of a fever. Long story short, he does not. He just hadn’t really been himself all day yesterday, and the evening ended with the first attempt to take his temperature and him running a little high. It came right down and might not have even been an accurate read.

Some of Leah’s college friends visited today. We haven’t seen them in a while, but, as I’ve mentioned before, it’s really neat how a situation like this with Beckett can really help foster and encourage visits and opportunities like these to see people/friends we haven’t seen in a while.

Beckett’s breathing has been a little bit on the faster side today, but they are saying that he looks comfortable. We are just praying that nothing bad comes of this, and that he only continues to get better and stronger.

Thanks to those of you who have reached out to help with our home repairs. We may actually still be in need of some help (if you are interested/available), but my new mission is to try to coordinate this from afar from various different men who are able to give some time, but not necessarily available to finish it (which is totally understandable). If you live somewhat near us (Upland, IN), and are interested in helping…we could possibly use your help this upcoming week. Please let us know.

Lastly, we are loving the emails you all have been sending Beckett. If you are confused as to why anyone is emailing Beckett, feel free to reference the previous 2 postings. You all are sooo awesome!

Thank you.

#GoBeckett
#ODAAT

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

UPDATE (7/12/13)

So, nothing too crazy today….buuut, we’ve had to make some adjustments. His breathing has gotten a little more “distressed” throughout the day, and Leah couldn’t help but express her concern that he just wasn’t completely “himself” today. We tried playing with him this morning, and even tried practicing some of the oral feeding stuff, but he just wasn’t havin’ it. He’s ok, it’s just that stuff like this makes us nervous. They think his lungs might be getting a little “wet”, so they have given him an extra dose of Lasix (this time IV), and this, in addition to his originally scheduled oral dose of Lasix should help get rid of some extra fluid. His oxygen flow settings got as low as 1/2 a liter (remember, about a week ago he was on a flow of 20(!!) on a VapoTherm), but he is now adjusted up to 2 liters (for now) to help compensate until he can pull himself back to a baseline. He’s ok (How many times am I going to type that phrase in this update? It’s like I’m trying to convince myself), we are just making a few adjustments. We asked the nurses here if this is a “setback” or a “bump”. They said that this is only a “bump”. This has not necessarily delayed our progress for going h.o.m.e. So, we are just trying to not get overly stressed about this, but just trust in God’s omnipotent control….one day at a time.

Speaking of going home…the conversations we are beginning to have with so many people here at the hospital about discharge stuff is daunting. We need to set so many things up, and talk with so many people, and learn so many different meds, etc, etc, etc. I’m confident we will be “fine”, but discharging a baby like Beckett is no simple task; there are many facets, many variables, many intricate details…he truly is a special boy!

We’ve also been working with numerous different people on things that we have been trying to arrange at our home for months now. We still have drywall that needs to be fixed from when our roof leaked back in April. But even more important than that, we have a quaint lil home of 3 bedrooms and 1 bathroom. Well, I’ve been trying to coordinate with many different kind and helpful people to fix our tub in our bathroom (it needs to be replaced). Unfortunately, Beckett’s amazing progress has unintentionally encouraged those who’ve been willing to possibly fix this for us before Beckett comes home to “back out”. Totally understandable, just troubling from our perspective. We definitely don’t want to be without a bathroom once we get home from our 6-7 month stay in a hospital, but it’s looking more-n-more that this repair isn’t going to be able to happen within the next week or so. Sooo, I guess, I humbly throw out some feelers for anyone able/interested/willing to help us with some home repairs (particularly our one-n-only bathroom). I wish there was a different word I could use other than “humbling”, but my pride forces me to push against asking for help, especially in times of need. We may actually have a few people able to do this for us, but one generous friend said even if he can do it that he couldn’t even start until next Tuesday. Well, the current rumor floating around right now is that we may actually be discharged by sometime late next week (say, Friday or even Saturday). So again, if anyone is able to help, please let me know. Thank you so very much.

Lastly, thank you all for your emails to Beckett. I posted yesterday how cool it would be for anyone to email Beckett for him to read later in life as to how he and his life has encouraged and/or inspired you. I’m adding spaces between the “@” sign in his address so that it doesn’t get picked up and spammed (we’ve already gotten one email saying that Beckett is being given an inheritance check…his account has only been active for less than a week). So, again, feel free to email him here (if you feel encouraged to do so): beckettrupp @ gmail.com

Thanks everyone. We’ve come a long ways, and we are almost H.OM.E.
Amazing!

#GoBeckett
#ODAAT

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

UPDATE (7/11/13)

Wow, what a great day!

Not much really happened today…which is a good thing…all-in-all, it was pretty uneventful. We did some Physical Therapy today for Beckett, which he handled very well. Leah and I actually left for a few hours this afternoon, we grabbed a quick lunch, then went to the Children’s Museum. It was really fun. We found out it was free today between 4:00pm-8:00pm (or something like that). When we returned, we were greeted with a pleasant surprise; they had Beckett in a stroller!!! What?! That was awesome. So, we actually strolled Beckett around for a bit, and he tolerated/enjoyed it quite well!

I’d like to actually conclude this update like this:
Not only have soooo many of you been such an encouragement and blessing to Leah, myself, and even our son, we understand that Beckett and his journey has left quite the mark and impression on many of you. Well, we’d love to hear from you. In fact, Beckett has got to be one of the youngest kids to ever have an email address, because I just set up a beckettrupp @ gmail.com account (I’ve added the space before and after the “@” to help the email address receive less spam, just eliminate the spaces when you go to email the account). If you wouldn’t mind, we’d love to receive emails to this account with messages to Beckett that he will be able to read later in life as to how he and his precious little life of perseverance and fight has challenged, encouraged, strengthened and humbled your life (he certainly has done all of this and more to both Leah and I). We love to hear about the tears, the laughter, the inspiration he might have evoked in you and/or your family’s life. I just think it would be sooo neat for him to be able to read these emails back when he can understand more as to why he has a special mark down the center of his chest. Clearly, I don’t want anyone to feel obligated, but I’d also like to ask if you’d also forward this post to others so that his inbox may be flooded with emails from all of you encouraging him when he may someday not quite understand why he is “different” or to reinspire him that his life has meaning and purpose, and his natural gumption to fight at such an early age was so inspirational.

Anyways, I think you get what I’m trying to say. I thought of this idea earlier today, and am pretty excited about it. Even if we only get a few messages, I’m sure Leah and I will find much encouragement from them for now. Beckett has the best “fans” ever! He already has way more friends than Leah or I. 😉 And I’m excited for him to begin life outside of these hospital walls. Thanks everyone…love you all!

#GoBeckett
#ODAAT

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

UPDATE (7/10/13)

Wow! What a day! I suggest you buckle-up:

Our day began with some pretty unbelievable news. We were told that we may be going to the heart center today! No, that actually isn’t the “unbelievable news”, what was even more exciting was our PICU Intensivist sharing with us (after we kind of coerced him to) that it is not necessarily out of the question to possibly go H.O.M.E. by sometime next week!! Now, he would probably be fairly disappointed if he knew I posted this, because he didn’t necessarily “want to be quoted”, and we have certainly agreed to keep our expectations in check. But….WOW, amazing news, huh?!

Soo, moving on. We were then informed that the transfer paperwork to be moved to the heart center had officially been put in. BUT, they currently did not have any available rooms. They said that we were second on the waiting list, but will definitely be moved as soon as there is room. We then spoke with a Cardiologist Resident who said that the heart center is awfully full, so we shouldn’t necessarily expect to head up there today.

So then Leah’s mom came down again. We played with Beckett for a while, then Speech Therapy stopped by. Speech Therapy works with nearly “all-things-mouth” related. So, not only “speech”, but also “bottle feeding”. Now that Beckett is off of VapoTherm, we are allowed to try things like bottle feeding again. We haven’t tried bottle feeding since February (when we were really close to going home the first time). He did surprisingly well for pretty much not ever being bottle feed. He also got to try rice cereal for the first time! He does have a long way to go, but it’s still exciting to be at this point.

Doesn’t this just sound like some sort of fairy tale? I mean, what seemed like a “lost cause” NUMEROUS times is now concluding with what appears a glorious happy ending. Yes, we still have some upcoming challenges, and mountains to scale, but we’ll worry about those days when those days come.

We were also graced with the presence of a few of Beckett’s favorite nurses from St. V’s. Now, don’t bite my head off Riley nurses, I said “a few of”, and I pointed out “St. V’s”. 😉 Beckett truly does have a lot of fans, but when it came to his daily care, it was difficult for him to not steal your heart….and he won’t give it back. These few nurses (among many many others) have meant a lot to us, and even months after moving from St. V’s here to Riley, they STILL visit and follow Beckett’s journey. It’s amazing, they’re amazing! They actually got to be a part of something pretty special today too. Let me explain:

As we all (Leah, me, Leah’s Mom, and our 2 St. V friends) were hanging out in Beckett’s room (we are actually only allowed to have 2 people, including Leah or I, in his room at a time…..oops), our nurse peeked her head in our room and said, “We’re going up” (referring to the heart center)! It happened quite fast. Within minutes we were scooting Beckett and his crib out the door, over to the elevators, and to his new room on the heart center floor. What’s amazing about this, is that other than the one day we had after he was born (before he was diagnosed with HLHS), this is our first time ever NOT being in an intensive care unit! Wow! Now that’s a “graduation”. This is a big day for us, and all the more for Beckett! We are so proud of him. We are now one step closer to the H-word (…home…). In fact, this is the last step. We will now see just how much he impresses his cardiologists, and if he shows no signs of relapse, we will probably be served our discharge papers! Yikes! What to even do with a baby at home?! We’ve kind of been laughing about that as of late. But I’m sure everything will be fine, it’s just kind of intimidating taking a baby…OUR baby, with such a complicated history, home. But again, we will deal with that when it comes.

Thank you Jesus! You are the savior of my soul, and the healer of my son. May you receive glory yet again this day, and everyday. May we please never take a day or opportunity for granted!

….thank you

#GoBeckett
#ODAAT

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

UPDATE (7/9/13)

Beckett is doing so well. This is such an overly used phrase, but completely applicable in this situation, “It’s a miracle!” It’s so exciting to see him excel and successfully achieve goals and bench marks.

I was actually not in Indy for most of the day today, but Leah mentioned that earlier this morning Beckett was extremely happy, “flirtatious”, and cooperative. I guess PT stopped in to “assess” him, but after noticing how good he was doing, they decided to try to do a few things (stretches, sitting up, etc) with him, in which I’m being told he tolerated very well.

You may recall me stating that they took out his PICC line the other day. That was definitely a good thing, particularly because of how old it was getting. However, they decided they want him to have it again, but this time in his other arm. Consequently, they were able to then pull his other lines (a central line, and an arterial line). I just noticed then, earlier this evening, that new PICC line is not hooked up to anything; apparently it doesn’t need fluids running through it this time (Leah is telling me that it might be “Hep Locked”…whatever that means). So, the only things directly “hooked” to him are the pulse ox and electrodes as-well-as his nasal cannula. I can almost pick him up and just walk around the room….that day will be amazing!!

As I was typing this update, Beckett’s surgeon, Dr. Brown, just walked in the room. Needless-to-say, I stopped what I was doing and felt obliged to stand. He was only in our room for a minute or two, but said Beckett appears to be cooperating with the program. He said that he is looking much better, and that he is very pleased. He then said, “Very good” and walked out of the room. I looked at Leah, and you could see a huge sigh of relief rest upon her. It was kind of like, ok, we’ve observed that he is looking pretty good to us, but to hear it from our surgeon is certainly a huge boost of confidence.

You all have been too kind about the dedication video. I keep getting messages and posts thanking us for sharing that moment with you. And though I appreciate your appreciation, we feel as if we should be thanking each of you. I know I conclude nearly each of my updates in this way, but I cannot help but thank you all over and over for your prayers and support. We aren’t done yet, but we are certainly sniffing fresh air and are excited for the immediate days to come! #GoBeckett!!! ……#ODAAT

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

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