Heart of Beckett

Good evening. What an emotional roller coaster, huh? We are now making our new home here at Riley, the 4th Hospital (3rd Network) since Beckett has been born. We have been welcomed with open arms here at Riley, and have really appreciated the care and concern they are already showing towards Beckett. However, we do miss our old friends from St. V’s, but they each know they can visit us at anytime. That offer is open to anyone else as well. Clearly, it may be challenging if a few hundred people show up at the same time, but as long as you are healthy, and you are reading this post, you are welcome to visit! If you think the pictures are cute, you are in for a treat to experience our Beckett face-to-face. He’s got an incredible skill to just draw you in with his eyes and not let go. 😉

Sorry we did not post a second post last night. I actually did not get back home (here in Indy) until about 2:00am. Beckett had such a great day yesterday that as the evening began to wrap itself up, Leah looked at me and said “If you promise to take me home [to Indy] tonight after Beckett’s [2nd] Benefit at Taylor University…I feel comfortable enough to come”. That’s a big deal. Leah rarely leaves Beckett’s side. In fact, as I type this update, she has been holding Beckett for the past few hours, and when I asked her how long she’s been holding him, she seemed to surprise herself when she realized it’s been so long. It just feels like time is an irrelevant continuum when it’s just her and her son…it’s a beautiful thing. I can’t help but laugh, in which she questions why I’m laughing, and I don’t really ever have a good answer other than how endearing it is to simply watch her lose herself through the undeniable love she has for our son.

The Benefit was amazing last night. So many people came out in support for our son…I just wish we had a better word than humbled, because I feel as if that word isn’t quite adequate. If I begin naming names, I’m confident I will accidently leave someone out, buuuuut, I have to mention a few. Sooo, a huge thanks to the MAHE Cohorts, Amy Wilson, Steve Austin, Jake McCurry, Taylor Smythe, Eric Strong, Josh Kiers, Seth Abram, Jason Miller, and all those who donated gifts, time, talent, etc. And then to all those who came…geesh…so cool. So so cool. Thank you.

To fill the gap of my last post from yesterday (late morning) until now…Beckett is rockin’ it! Sorry, I should state it more professional, but “good” just isn’t cutting it anymore. He had that “invasive” procedure in the morning and did really really well. Then, when moving into the afternoon, we realized that the communication began to slow down. Later it was made evident that they were rethinking things throughout the early afternoon (when he was suppose to be having his MRI of his belly). They decided that this wasn’t the appropriate measure (for various reasons) and encouraged us to flush out his gall bladder. They made room to squeeze it in that evening, and after some Q&A time, we said “Lets do it!” So, this is now the second “invasive” procedure of the day. It was a concern, but he had handled the early procedure so well, they truly felt he could and would handle this just fine. After a longer time than we were expecting passed us by, they finally found us and calmly explained how well he did and they were able to clear our a tiny obstruction in his bile duct. They are now just draining any unnecessary sludge with a drain, and we were informed this morning that his bilirubin has already decreased another 2 points! Then, today, he got extubated once again!!! Yay! He’s handling it well, and we are just sooo relieved and at peace with his current care and condition (hence, emotional roller coaster). He currently looks great, and the plan for this weekend is to just chill and recover. Beginning early next week, they will shoot some dye into his drainage tube to confirm that everything has been relieved and “fixed”. If the dye flows well and correctly, they will simply remove the tube and that problem is theoretically solved. We will be waiting to then hear further details to a game plan for Beckett’s recovery and will have more details at that time.

As always, thank you for all of your unwavering support. It is so encouraging and invigorating throughout this journey. Beckett is nearly 4 months old now, the Heart of Beckett website has only been live for about 3 months, and we’ve already had over 50,000 hits! That’s just crazy! Sooo, hang in there with us and with Beckett. We are in another upswing, and it feels sooo good.

#ODAAT
#GoBeckett

As Leah and I sit here in one of Riley’s Family Rooms waiting once again while Beckett undergoes yet another operation, I am reminded of a song, recently brought back to my attention by a friend of ours, titled “Hallelujah”, by Leonard Cohen. It was made famous by many, but particularly to the younger generation through Rufus Wainwright. One of my favorite renditions of it is from an artist I’ve liked for a very long time. His name is Phil Wickham. I’ll provide the link at the bottom of this post and strongly recommend listening to it if/when you get the chance. It’s very genuine and raw, and appears as if it was simply recorded with 1 take in a random hotel room…I love it!

I’ve actually always wrestled with the phrase “cold & broken Hallelujah” in that song. It forces me to wrestle with what it can even look like to sing a “cold & broken Hallelujah”. Now, I’ll clarify that this song is not “gospel truth”, but it is art, and if you allow it, it can make you wrestle with deeper issues like the one I want to present in this post.

As many of you know, I believe in a God. I believe in one God…“the” God. And even those few sentences are a huge turnoff to many of you following Beckett’s journey. But I must plead for those of you who disagree with my beliefs to please hang in there with me and to not take your encouragement and support away from Beckett because of this disagreement. I truly believe Beckett still needs and wants all of our support! I am not so dogmatic to belittle anyone who believes different than I, but I cannot bend in my values and beliefs. With that being said, I believe in the Bible, and I am not deceived to trust in its infallible nature. I do wrestle, however, with scriptures like 2 Corinthians 7:4 “In all our affliction, I am overflowing with joy” or Romans 5:3 “we rejoice in our sufferings” or James 1:2 “Count it all joy, my brothers, when you meet trials of various kinds”. What do we do with passages like this? Are we to just smack a smile on our face as we are beaten, broken and run down? I don’t think so. But I do think we can sing “praise” and “hallelujahs” with a troubled spirit knowing that our “suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us”. Nowhere in scripture does it say that we can get what we want with enough prayer. I think the key phrase to pull out of that last sentence is “get what we want”. What a selfish phrase that is. People like to use the passage Romans 8:28 “that for those who love God all things work together for good…” But what does “good” mean? What we desire? I don’t believe we aren’t suppose to ask for the desires of our hearts, but I do believe we are to follow it with “but Your will be done” as a sign of our trust in His sovereignty and complete control. Romans 8:28 ends with “for those who are called according to his purpose”. I think that is where we are given a glimpse of the definition of “good”…”according to his purpose”. I am constantly reminded of Job’s story where he lost nearly everything…his wealth, ALL his children, his health…yet he gave God the glory. How is that possible? Job 1:21 says “The Lord gave, and the Lord has taken away; blessed be the name of the Lord.” Take note, he says, “The LORD GAVE, and the LORD has TAKEN AWAY”, not Satan, or evil…God did. I think back often to December, before Beckett officially joined us in this world. I believe that if God would have given us the option to choose a smooth journey as opposed to this challenging one we are currently right in the middle of (even knowing all the good that has truly come from this situation and will continue to come from it) we would still choose the smooth journey. Right? I’m weak. I’m closed minded. And I’m selfish. Even if God is doing greater things through this struggle, my heart bends towards what is easy. I believe this is where “the rubber meets the road”, especially in my prayer life. I beg God daily to preserve Beckett’s life, but I believe my ultimate priority is to know God fully. A close second (a very close second) is Beckett and my family, but again, my priority is to know God and worship him fully. I think we can, in a genuine spirit, cry out “hallelujah”, even in the midst of confusion and heart ache begging God to help us embody a healthy perspective and understanding of his control and purpose through our calamities.

Since this post has taken me so long to type, we’ve actually already now received news that Beckett did GREAT, no glitches, with his cardiac cath!!!! That is awesome!!! We are so thrilled, and now continue to just take another step forward in this journey. Truly One.Day.At.A.Time.

Phil Wickham – Hallelujah
http://www.youtube.com/watch?v=0Q00mWa0_ig

#ODAAT
#GoBeckett!

If you recall, I posted a few days ago that I feel as if I’ve been getting sick. This, in addition to all the emotion yesterday as-well-as overall exhaustion, today has been a challenge. Leah has worn herself out as well, yet we are so thankful she has already put in her hours for the week in Fort Wayne as we could not have anticipated what the backend of this week had in store for us.

As soon as we arrived last night at Riley, they began numerous tests on Beckett…and continued to all throughout the night. They were thoroughly assessing him today until they finally reached a conclusion. They need to do a cardiac cath on him tomorrow and not only evaluate his heart function, but also fix a small portion of his heart that they believe should really help his overall cardiac condition.

Additionally, and while they have to unfortunately reintubate him once again for the cardiac cath, the plan is to do an MRI of his liver/gall bladder area to get an extremely accurate view of what all is needed to repair it. What is planned after those results are analyzed is still to-be-determined.

Beckett has had a “good” day and, to none of our surprise, continues to steal hearts right-n-left. Everyone seems to comment on how cute he is, and “those eyes!!!!”. He has been very chill today and behaved very well during his examinations. Leah got to hold him a few times today, and you could tell that he just loved it! I, unfortunately, have been wearing a mask around him, and even though I had gloves and a gown on, I didn’t necessarily feel that comfortable even touching him much with the smallest possibility of him catching anything from me. That’s some torcherous tension that I attempted to “mask” (no pun intended) all day.

So, I guess I conclude that today was a “good” day overall. We are still very concerned for Beckett’s immediate future, but that ideology conflicts with our #ODAAT principle to simply take this journey one-day-at-a-time. Please pray that tomorrow’s cath goes well, and that they find what they need during the MRI. I do have some good news to share though (sorry, I nearly forgot), Beckett’s direct bili has come down!! Now, it is still high, but not as high as it was….which really is great news! Sooo, we press on and continue to love and cheer Beckett on throughout this journey. And please excuse my preface, but as self-medicating and overused as this sounds and is, I truly do want to continue to give God ALL the glory and trust that we are now here at Riley for a reason. We may or may not ever fully know the reason, but Beckett is not “ours”, he’s a gift and a blessing that we lay at the Lord’s feet entrusting him (Beckett) to His care.

I conclude, and was reminded of, a powerful and applicable scripture posted yesterday by a faithful follower of Beckett’s story (thank you Sharon):

Romans 8:26-27
“In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the Saints in accordance with God’s will.”

#ODAAT
#GoBeckett!

I must begin by warning you that this is not a “good” update.

As many of you know, we were prepared to transfer Beckett this morning back to Peyton Manning for a HIDA scan. This was a test to observe Beckett’s Liver, Gall Bladder and Kidneys. Well, they tested his Bilirubin again this morning, and it went up a lot once again. This inspired the decision to skip the HIDA scan and begin the conversations for interventions via procedure/operation.

The first theory seemed quite noninvasive. We heard one technician say it may only take 10 minutes to complete. They were also talking about trying to just do it here rather than being transferred over to Peyton Manning. These conversations were quite encouraging and seemed quite doable.

As the day progressed, we were preparing ourselves with questions for the care conference later in the afternoon at 3:00pm. At around 2:00pm, one of Beckett’s primary physicians came in the room to update us on the current plan for Beckett’s operation (as we had been thinking that this would have been “done-n-over” by now). Plans actually changed multiple times throughout the conversation. By the end, it was determined that Beckett needed to be transported to Riley Hospital for the best care for the particular procedure they are recommending. This was interesting news and definitely evoked further questions.

We then began our care conference with a room full of his primary specialists for his various areas of concern. It began with a conversation about his consistent and continual rise in his bilirubin level. Eventually the cardiologist spoke up and shared her concerns. This is where the vibe of the day takes a sharp turn.

The Cardiologist proceeded to explain her theory that she believes Beckett’s Liver, Gall Bladder, and Kidneys are being affected by his heart. She continued by reexplaining that Beckett’s heart is still enlarged and not functioning as well as he needs it to. She seemed to follow each statement with the words “I’m concerned”. She has always spoken very direct with us. In fact, she was the first person to really explain Beckett’s condition when we first arrived down here in late December. It seemed as if she was concerned enough about Beckett’s condition to reinforce any risks the “operation” may have on Beckett. She said that Riley will evaluate Beckett from scratch to even determine how safe this “procedure” will be, because there is always a chance with how fragile Beckett is on if he can/will even survive it. Additionally, she shared her concern on if Beckett will ever be ready for the phase 2 operation (for his HLHS). She didn’t necessarily seem convinced that he will ever quite develop enough to be ready for it. Furthermore, she discussed with us the very real potential for Beckett to possibly require a heart transplant. She explained the risks involved with that, but mostly focused on the fact that Riley can actually do transplants if we ever get to that stage (and St. Vincent’s/Peyton Manning do not).

After she explained these “concerns”, hardly any of our premeditated questions were even applicable. It was hard to know what to say. One insignificant question came to mind concerning moving out of Beckett’s room (aka: taking down all his pictures, decorations, etc). Other than that, it took all that we had to make it out of the room with a “thank you” without crying. Walking back to Beckett’s room was a blur. Our eyes filled with tears, and Leah and I just held each other for a while and cried.

The Cardiologist met up with us once again in Beckett’s room, to offer us an opportunity to privately ask any questions we could think of. Unfortunately, our questions were so direct, her general response was “I don’t know” or “I’m not sure” “…I’m just concerned”.

After she left Leah and I took a walk outside.
-more crying-
-more hugging-
Our concern is not necessarily just going to Riley, but rather the fact of feeling like we are starting all over again with brand new doctors, surgeons and nurses….but more-so the overwhelming concern that our Cardiologist made evident. I could spin this in “good light” and “good perspective” (like: fresh set of eyes, option for transplant, continual and respected reputation for patient care), but it just currently seems more fitting to just say nothing. I would just look into Leah’s eyes and cry with her. I still trust in God’s control, but mourn in the unknown. We are forced once again to trust in our Savior and his sovereign plan. This is a lousy situation, but we press on one step at a time. There is no reason to get ahead of ourselves. We are yet blessed once again with another day with Beckett, and another day as a family.

So, I conclude with an inadequate attempt to show our sincere gratitude to the St. Vincent / Peyton Manning medical staff. We are so grateful for your talent, care, and love you’ve faithfully and generously demonstrated to both us, and particularly, to our son. We are forever in your debt. Though we know we are in “good hands” once again, it was through your fervent effort and skills (and our God’s control) that we are even at this point in this journey. May God continue to bless each of you as you bless many other families with the level of care you’ve shown us. Please don’t be a stranger, as I’m sure Beckett would enjoy seeing you all as often as possible.

#ODAAT
#GoBeckett!

An interesting day…

As soon as I finished my responsibilities at school today, I drove right back down to Indy. After texting Leah a cute pic of Beckett with the caption “Hi Mom! I’m sleeping good. I miss you!”, she was pleasantly surprised at how quick I was back by his side. I knew it would make her feel better if I could manage to get back down to him as-soon-as-possible….and I was right.

I slept horrible last night and remained in a state of limbo between awake and asleep until well after 3:00am. All I could keep thinking was, “this is gonna ‘hurt’ tomorrow”. Sure enough it did. I say that because I think I’m starting to get sick. My nose is runny, I’m sneezing more often then normal, and I keep clearing my throat way too frequently. This made today even more miserable as I could only (for Beckett’s sake) stand by Beckett’s bed and talk to him (often with my hand in front of my mouth). I didn’t realize just how much I enjoyed touching my son and rubbing his head until it was “taken” from me. But all is well as I peer across the room right now and watch my beautiful wife hold my precious son. It just warms my heart.

Some announcements/updates:

We were informed today that the current plan for tomorrow is for Beckett to have a HIDA-Scan. This is in reference to his increasing bilirubin. They need to see if everything is working well in/around his kidneys, gall bladder and pancreas. This involves a trip back over to Peyton Manning Children’s Hospital. Though we are thrilled to possibly see some of our old friends from over there, we aren’t too excited for this transportation.
…for no particular reason…..just uneasy about it.

They weaned his fentanyl again today by .5 (first time in 5 days). So far he is handling it well, so we are very thankful for that. They are also eager to continue to increase his feeding. So far, for the most part, he is handling that well too. This is a really good thing for him, so please pray that this continues to increase at a rapid/healthy rate.

Sooooo, please:
-Pray for the transportation of Beckett.
-Pray for the hida-scan and the results.
-Pray for his bilirubin to go down.
-Pray for him to handle his weaning well.
-Pray for a safe/consistent increase in his feedings.
-Pray for the “care-conference” tomorrow at 3:00pm (that I’ve been talking about for the past week or so).
-Pray for my health
(these are just a few specifics for the day, we always appreciate pray for other-all health, for Leah, our marriage, for safe travels, etc, etc, etc…)

If you haven’t seen the picture I just recently posted, you must check it out. My son is just so darn cute. One day at a time…..Go Beckett, Go!

#ODAAT
#GoBeckett!

Leah left for home last night to be a little closer to work for the day today. I was with Beckett last night until after midnight. He was extremely irritable and needed a lot of attention. I tried to help him fall asleep over and over, but he wouldn’t remain asleep for much longer than 5 minutes until he would then awake in hysterical crying. Thankfully he was always consolable, it was just exhausting. Little did I know that he was merely giving me a glance at what was in store for me all of today. Now, to be fair…please feel more bad for him then me, as he is the one “uncomfortable” and crying.

I held him multiple times today, his nurse held him, we put him on his stomach, we put him on either side, we inclined his bed, we flattened his bed, I’d “swing” him, I’d pat him, I’d rub his head, I put a towel over his eyes, I fanned him with my hands, on-n-on-n-on…..until we’d either make it to his scheduled methadone dose or have to give him a rescue dose of morphine (which hardly helps anymore). The thing is, all of the aforementioned attempts actually worked….but for only 5-10 minutes (I think I had him sleeping one time for about 15-20 minutes). He’d startle himself and wake up aggressively crying. I tried to do all that I could to “pacify” the situation without the intervention of drugs; for the most part, it kind of worked. I got so tired from the past 24 hours or so, that when his Respiratory Therapist came in for a 5 minute treatment, I sat down in a rocker and nearly immediately began to snore……ooops. 😉

Please pray as he has continued to withdrawal pretty hard the past few days. He’s also lost some weight. However, that is expected as he is just now recently being slowly reintroduced to his feeds. He threw up a few times today as they’ve continued to increase his volumes daily (so needless to say, they are going to slow down a little now because of that). From a respiratory standpoint, he’s rockin’ it. He doesn’t really desat at all, even when he’s crying…which is great! He’s still a little yellow from the increased level of direct bilirubin, but we were warned that it may take 7-10 days to really see any results from the Zosyn (his infection medicine for this).

We really are content and pleased where Beckett is at physically. We were just sitting here together in his room reminiscing not only how far he’s come over the past few months, but especially even the past few weeks. It was a beautiful day outside today, and we hope and long to eventually get to spend a beautiful day like today outside as a family, Beckett and all! 🙂 #ODAAT

#GoBeckett!

Well, from a respiratory standpoint along with his cardiac “issues”, he’s actually still looking pretty good. It’s all kinda relative though. I mean, though he’s back down to room air (21%), he’s still on 6 liters of support from his VapoTherm. And though from a cardiac standpoint he’s “looking good” as well, he’s still on heart medicine and has an enlarged heart. BUT, he really is having better days as-far-as everything he’s been battling the past few weeks.

With that being said, he has been withdrawing pretty bad off-n-on all day today. He pretty much had to be held all day, which afforded a lot of opportunity to his grandparents today! 😉

His bilirubin is still up. In fact, it’s even a little bit higher today from yesterday. Leah said that he looks like an Oompah Loompah (however you spell that). I think he just has a nice tan. But on a more serious note, he is being treated for that…we’ve just been informed that since it’s “direct bili”, it takes a few days to see the results from the medicine. But rest assured, he’s definitely being treated for it (along with many other things).

We have to be reminded that even though he’s been “high as a kite” pretty much all day from the rescue doses of morphine, these were the “struggles” we were longing for when we were over in the PICU back in January. We are so thankful for yet another day as we take on this journey right alongside of Beckett one day at a time.

Oh, also…he’s lost a little weight. Not much, but some. So that’s something else to be praying for as well.

Thanks everyone! #GoBeckett! #ODAAT

Beckett has had what the nurse has reinforced to me “a good day”. I think it was just one of those days for me because every little thing “wrong” was bothering me. It wasn’t that horrible things were even happening, but forsome reason I had to keep asking any nurse or doctor today if everything was really ok.

My day began with the nurses telling me how good Beckett is looking and that he is doing great (which he was, and is). However, within a few minutes I was politely pulled aside into a conference room by one of Beckett’s doctors to talk with me about a few things. She began by saying, “Beckett is doing well, but…”….that’s never something you want to hear. She (the doctor) proceeded to tell me that Beckett’s gall bladder wall is thick and his direct bilirubin is back up again. He also has some build up of sludge in his bioducts. She said that GI has been called over from the PICU to check it out. Additionally, Beckett’s kidneys are enlarged. There are more details that I will leave out, but all-n-all, the GI doctor said that they think it’s going to be treatable via medication. That’s good news because there was a chance that they were thinking of needing to send Beckett back over to the PICU to do a study and if unfavorable results emerged, surgery was the next option. Soooo, please keep praying that surgery is not the case and the meds they’ve already put him on will be more than sufficient for this “problem”.

Beckett’s fentanyl was decreased today. He’s handling it weeeeellllll (that’s my version of a cautious “well”). He really comes off any pain meds these days with much difficulty. They had to intervene a few times today by way of administering his scheduled methadone early, and then eventually a rescue dose of morphine. To be quite honest, it kinda freaks me out AND breaks my heart all at the same time. When he was withdrawing hard earlier today before the additional pain meds he just inconsolably cries and it looks like he’s going through so much pain. And when he’s not crying, he’s doing things like crossing his eyes, or doing other funky things with his eyes, or just staring straight at the ceiling. He just gets so snowed that it’s hard to even see his personality through the gaze. We had been warned months ago that his withdrawals will be challenging for both he and us…..and they weren’t kidding. The proper perspective here, however, is that his heart is pumping well and his lungs are looking better. In fact, I’ll conclude on this note…they did another X-Ray this morning and it actually stated that his plural effusion is gone (once again). It’s hard not to roll your eyes at the news, but I have to fight that urge as that certainly doesn’t display gratitude nor thankfulness. It’s just hard not to think, “yeah, it’s gone…..for now”.

So…please pray for our attitude (well, I should speak for myself, my attitude), continued healing (particularly for his gall bladder and kidneys now), along with a smooth(er) wean from his pain meds and even continual acceptance of the reintroduced “feedings”.

Thanks everyone!

#ODAAT
#GoBeckett!