Heart of Beckett

UPDATE (4/4/13)

Soooo, after a long day of classes, I finally made my way back “home” to Indy. Unfortunately, as soon as I got here Leah was leaving for Upland to head back to work tomorrow morning for another 12 hour shift (last one for the week). I literally saw her in passing on Monday night for less than an hour before I had to head back to Upland, and tonight was unfortunately eerily similar. We are truly doing ok though (for anyone who’s been wondering), but it has been an additional challenge.

Leah was texting me updates throughout the day (sorry to all my professors who could tell), as today was yet another “big day”. By “big”, I mean successful. Beckett has been successfully extubated once again. He truly looks great. Leah said that it went smooth and he seemed relieved to have that tube out of his throat once again.

Our surgeon stopped in the room earlier today inquiring about Beckett’s status (he has been out of the country on vacation for the past few weeks). He was discussing with the neonatologist as to why Beckett has had to go on and come off the ventilator so many times. They explained to him that it is a number of things, but Beckett’s reoccurring plural effusion (the fluid around his lungs) is a large contributor to his struggle(s). One odd thing he mentioned to Leah (and supposedly didn’t really explain much) was that if Beckett is still here in 3 weeks, he said that we are going to need to start talking about possibly doing his second surgery “early”. Now, before we freak out, we don’t really know what “early” means, and he really didn’t take the time to clarify, but it evoked some “brow-raising” at the very least. We were told last week by one of Beckett’s cardiologist that we will definitely be waiting on Beckett’s second surgery until late May at the EARLIEST, but most likely June or July. Well, 3 weeks is still April….sooo, I guess we will wait and see what the near future holds. I was also informed today that our “care-conference” (where all the docs, surgeons, cardiologists, nurses, and us all come together) will be happening sometime next Wednesday. That should be an opportune time to get a lot of questions answered and hopefully solidify a collaboratively derived strategic game-plan (how’s that for a mouthful). I am in great anticipation for that opportunity and will most likely feel much better after that finally happens.

That’s about it. Beckett really is doing “well”, just please pray for no more set-backs. I truly can’t imagine him (nor us) “handling” much more. It’s time for consistent “wins” and a regular flow of “good news”.

“But when the darkness of dismay comes, endure until it is over, because out of it will come the ability to follow Jesus truly, which brings inexpressibly wonderful joy.”

#ODAAT
#GoBeckett!

UPDATE (4/1/13)

Happy April Fools Day! I really wanted to play some sort of April Fools joke with this update, but I literally could not think of anything that wasn’t terribly inappropriate or out-of-line….so I must refrain.

With that being said, Beckett has had a great day today! No “Joke”! 🙂

I began my day by stopping in this morning to see Beckett before I met up with a good friend for coffee. As I approached his room, one of Beckett’s doctors greeted me at the door and said that I cannot go in at this time because they were putting in another chest tube right then. This is Beckett’s 3rd chest tube to drain his re-accumulating fluid. They were able to remove about 60 mLs of fluid. Beckett responded really well to it. He looks like a brand new baby once again. He pretty much slept nearly all day today and when he was awake we had some good time just looking into each other’s eyes as I just rubbed his head and legs, and held his hands. Leah was at work once again today trying to put in a full 12-hour shift (kudos to her…she’s a strong woman). She is actually on her way back down here right now, but unfortunately as soon as she gets here I will be leaving for home for classes to begin once again this week…my luxurious spring break has officially come to a close.

I had a good moment today discussing some theories and ideas I’ve been having about Beckett’s treatments with the cardiologist. I wanted to affirm that we will go even slower this time weaning him off of his pain meds. Obviously he has now been on pain meds much longer (3 months) than when we were first trying to wean the meds back in January (1 month in). Beckett has built up quite the tolerance to pain meds (unfortunately), and will need to be much more strategically weaned. He agreed and said that they will be sure to make sure they are even slower this time. I also asked about weaning him off of his IV hearts meds. I wanted to know why we are in such a hurry to take him off if they are so helpful. He said that there really is no rush and there really are no ramifications if Beckett stays on on them. So, with intent to give him all the support we can right now (especially while we attempt to wean off of pain meds once again), Beckett will remain on some level of heart meds until we possibly (hopefully) take him home or until his second surgery. I also had to ask about the plural effusion. I was glad they were able to drain it once again, but I wanted to know if they were really investigating WHY it keeps coming back. As a result, sometime next week we will officially be having a “care conference” with the surgeon, cardiologist(s), and his primary doctors and nurses in order to discuss 1)Where we are at 2)Where we are going, and 3)How are we going to get there. I will feel much better about Beckett’s “care” once I understand there is an actual plan. Lastly, I discussed the option of possibly doing a trach for Beckett. Believe me, I’m not excited about the idea…but I had to ask if it’s a “good” idea or at least something worth considering. He wasn’t very keen on that idea as he said that it is typically something that would stay with Beckett for a while, it’s another operation, and it will be very close to where they will be operating once again on Beckett within a few months (for his second surgery). He said it was a very intriguing idea, but after standing there and pondering the idea for a moment, he just wanted comfortable with it. Honestly, that’s all I needed to hear…but I had to ask.

I’m not quite sure why I add all those details to this post (as conversation like that happen often between us and the nurses and doctors), but I just thought I’d give you a glimpse into that side of our days here in the hospital.

As always, thank you for the prayers and support. We are still intently focused on leaving tomorrow’s troubles with tomorrow and living our days one moment at a time. Don’t get me wrong, I’m not “preaching” to not plan, prepare and ignore upcoming events…so I hope you understand what I’m saying. So I will claim it once more, One Day At A Time.

Stay tuned as we hope for even more good news throughout the upcoming days, weeks, and months. We are celebrating today with an old friend of ours I haven’t mentioned yet in our updates (I don’t think) who’s premature baby that was born around the same time as Beckett is going home today! That’s right, no April Fools Joke here! I’m so happy for them and cannot wait for our day to come soon as well!

#ODAAT
#GoBeckett!

UPDATE (3/31/13)

Happy Easter (once again)

Beckett has been very irritable nearly all day. It is a real challenge to calm him down. In fact, that picture we posted earlier today was snapped during the very brief moments between the calm and tears (obviously we try to only post the “good” ones…who wouldn’t?). Leah and I have been praying for an Easter Miracle all day (again, knowing this may happen or may not…but still trusting that God is still in control).

Dr. Kumar (one of Beckett’s Cardiologists) came in today and gave us a fairly uplifting update. He is very good at communicating difficult news with honesty and hope. He said that the critical areas I posted about a few days ago haven’t really changed and he isn’t really concerned by anything he is seeing. Beckett is still very critical (I mean, he just got put back on a ventilator last night), but in proper perspective, it could be much worse. He mentioned that our surgeon is out-of-town right now (we found out that meant that he is on a safari in Africa….wow), but he’ll be back this week and they will reconvene to figure out a good game plan. That’s good. I like “Game Plans”. But until then, we continue to take it a day at a time asking and welcoming God to perform even more miracles in our son’s life.

One small piece of bad news. You know that chest tube he’s had put in multiple times to drain fluid from his chest? Well, the fluid is back. 😦 This is not good. It is looking like they will need to tap his chest once again. Pray that if this happens (again), that it’ll go well and really help Beckett out. I’m really hating these little things that I know hurt Beckett, but it’s for his own good. How ironic that I allow Beckett to go through these painful situations for his own good wherein I am struggling through this particular situation most likely for my own good (#RefiningFire).

Truly, one day at a time. There seems to be no better perspective than that.

“In Christ, there is nothing I can do that would make You love me more, and nothing I have done that makes You love me less.
Your presence and approval are all I need for everlasting joy.
As you have been to me, so I will be to others.
As I pray, I’ll measure Your compassion by the cross and Your power by the resurrection.”

#ODAAT
#GoBeckett!

UPDATE (3/31/13)

Happy Easter everyone!

Just a quick update. First, Beckett was just smiling while getting his diaper changed and almost peeing all over Leah. It was great! However, secondly (and unfortunately before we left the hospital last night), Beckett got reintubated once again (for the 5th time now altogether). Indeed, this is clearly disappointing…but we know it is simply to help him.

Similar to if this was just a normal day, we are just taking it one day at a time…it’s no different. Happy Easter, He is Risen, Beckett is still with us! Many things to be thankful for!

#ODAAT
#GoBeckett!

UPDATE (3/30/13)

When is enough, enough?
How far can we bend till we break?

Today has been rough. Leah decided to not go in to work because of it (we are praying for no ramifications to her employment…we need her continual insurance), and I completely supported her decision. Beckett has been extremely restless and aggressively crying nearly all day. Is it withdrawals, is he in pain, are his lungs compressed against his big heart, is he hungry, is he uncomfortable…..? On-n-On-n-On We are now being told that they are pretty sure it’s cardiac related. Even though we’ve always appreciated “bad news” as long as it’s something rather than the unknown…this particular theory is very discouraging.

As I was attempting to pound out this update on my phone, he got so mad once again and dropped his heart rate lower than I’ve ever seen it into the 40s. I began to feel myself hit a breaking point and started to slowly “loose it”. I tried to hide it at first (a natural reaction), but couldn’t contain myself any longer. Leah noticed…and then it got worse. I just can’t help but ask the questions, “Why?” or “How is this fair (referring to Beckett, not me)?” or “When is it going to stop?”. Though emotionally driven, these questions are very real and difficult to wrestle with. I truly believe in “greater good”, and trust that God is allowing or doing greater things than we even know through this situation. Eventually, Leah walked up to me and said “Bigger things are going on outside of this little room”….and it’s true.

I believe it is not wrong to ask (or to BEG) for healing…and I will not stop. However, I must trust that my omnipotent creator is allowing this for a reason (sorry, but I’m not up for a theological debate here). We will take this a day at a time (ODAAT), and cry through it, plead through it, rejoice through it, and love deeper than we ever thought we could. There is no way we could be doing this without our faith, and you cannot challenge that unless you’ve been where I’ve been. God is good, all the time.
Please God…..heal my son!

Mark 5:28-29
because she thought, “If I just touch his clothes, I will be healed.” Immediately her bleeding stopped and she felt in her body that she was freed from her suffering”

Mark 9:24
Immediately the boy’s father exclaimed, “I do believe; help me overcome my unbelief!”

#ODAAT
#GoBeckett!

UPDATE (3/29/13)

All throughout this experience we have been encouraged by many families who have had children challenged with various medical conditions, some with Beckett’s condition (HLHS) and others with just as difficult situations. Their words of encouragement have been very appreciated, and we too cannot wait to someday be an encouragement to other families as well.Towards the beginning of this journey we were encouraged by a story of a precious little boy named Bowen. He is the son of Matt Hammitt, lead singer of Sanctus Real. Bowen, too, battled HLHS and overcame many dark moments. He is 3 years old now and has successfully completed his 3rd surgery! Hannah Schooler, Bowen’s aunt was in Leah’s cabin at Miracle Camp. They have remained friends since then and have had the opportunity to kept in touch through Facebook. Today Hannah sent Leah the picture below. This was yet one of many very encouraging “gifts” we’ve received throughout this process. Thank you Hannah, Hammitt family, and especially little Bowen!

On to Beckett:
I failed to mention that yesterday was Beckett’s 3 month old birthday! Yay! He is getting so big (at over 10 lbs. now), and I’m so proud of how well he truly has handled everything he’s been challenged with. He’s such a strong little man!

Dr. Kumar (one of his Cardiologists) came in today and explained a few things that they are watching closely. Overall, he was very encouraging, but had to speak directly that Beckett has 1)weak heart function, and 2)a leak from his tricuspid valve. In addition to his HLHS condition and an enlarged heart, those additional two factors do not do him any favors. Dr. Kumar did say that Beckett can definitely “come back” from this, but that he is very “fragile” and will need to be watched closely until after his second surgery. I had to ask what the plan was (these are things I can’t help but inquire about), and Dr. Kumar said to basically continue to help him get stronger and bigger and hopefully (eventually) get us to take him home. If that doesn’t happen, Beckett will simply remain in the hospital until his second surgery, which can be as-soon-as late May but preferably June or July.

Leah did receive the dreaded phone call this morning from the doctor that Beckett had a minor episode this morning and desatted a little. Apparently it took him about an hour to fully recover, but he eventually did. Then later this afternoon I happened to look at him in a comfortable sleep suddenly awake in a fiery rage. He immediately turned beat red and was crying hysterically. We went and got the nurse and they consoled him back down. The odd thing about it was how quick it was…..and from such a restful state. They immediately did an X-Ray and everything looks just fine. They did another Blood Gas, and that came back even better than earlier today. Not necessarily as a result from these outbreaks, but they decided to give him a little bit of fluid because of the amount of Lasix he’s been given this past week….they think he may be a little “dry”. Lastly, they are creating a new wean schedule for him to hopefully respond better to than before. All-in-all, it was an “ok” day. He hope for more uneventful days and appreciate “slow-progress” more than we ever thought we could. Slowly moving forward is always better than any steps backwards.

Leah has worked the past few days. She’s had a great attitude throughout it all, but you can tell she anxiously wants to get back to her son. She got very little sleep last night, as did I. I was up until about 3:30am finishing my Thesis. Today was just a day of proof reading and waiting for Mommy (Leah) to come back. Unfortunately, she has to head back first thing tomorrow morning to finish her shifts for the week. So please pray for her as she finishes the week strong.

Thanks for all the thoughts and prayers everyone.
Truly One. Day. At. A. Time. (ODAAT)

#GoBeckett!

UPDATE (3/28/13)
-Short and Sweet-

Today began with me, Leah, and both our mothers attending a class on how to properly maintain Beckett’s G-Tube “when we finally go home”. We really aren’t even close to having those conversations yet (of going home), but we just wanted to get that formality out of the way.

Leah left shortly after that for work today in Fort Wayne. This is her second day going back to work. It appears that she is handling it much better than last time, but if you rewind to “last time”, it was a terrible day.

Today has been an uneventful day….thank you God! I worked on my Thesis all afternoon while my mom and mother-in-law spent the afternoon with Beckett. My mom held Beckett many hours today and thoroughly enjoyed it (who wouldn’t?)!

Here are the medical updates:
– He is now already off of any new heart meds he was given earlier this week
– His Lasix is back to oral from IV
– He’s back on feeds and is tolerating it well
– His VapoTherm settings haven’t really changed much
– He’s got a very small plural effusion (nothing alarming at all)
– His lungs are looking better

Things to pray for:
– His heart is still considered “large”, so please pray for that to get under control
– Pray for continual Rest and Strength for Beckett
– Pray that while they wean his pain meds once again that it is done at a speed Beckett will tolerate
– Pray for continual healing!

Thanks everyone…”short-n-sweet”!

#ODAAT
#GoBeckett!

UPDATE (3/27/13)

As we were leaving the hospital tonight, I abruptly muttered “my how things are so different tonight than 24 hours ago”.

I must first explain that nearly my entire day consisted of sitting in the hospital lobby squinting at a laptop while little children mistakenly confused me for some sort of large play-toy. So, most of this update is what I have been relayed via Leah throughout my day.

The day was fairly uneventful (you’re welcome, for setting your mind at ease this early in the update). Beckett’s VapoTherm got turned down from 8 liters to 7 because we were being told that the X-Ray was showing his lungs to be inflated a little too much (and I don’t doubt it, having 8 liters of air blown up your nose looks/sounds like relentless-compressed-air being maliciously blown at your face for an unfortunately long amount of time……poor little guy).

Here is where the update gets a little interesting. Beckett has pretty much ALWAYS had (at the very least) a small plural effusion and mild to severe atelectasis. In fact, the X-Rays yesterday were showing a large amount of atelectasis (which is one of the many reasons he was struggling so much). The X-Ray today was showing NO plural effusion and NO atelectasis! I’m not gonna lie, part of me still finds this hard-to-believe (Mark 9:24), but a much larger part of me is genuinely blown away!

As a result, Leah pretty much held Beckett on-and-off nearly all day. She would send me pictures of him just sleeping, resting, lookin’ around, gettin’ his fingernails filed (yeah, they were gettin’ crazy long and we aren’t allowed to clip them), and all kinds of “normal” things. Beckett handled it so well. One of the things we kept getting told is how little “reserve” he has for anything. You go to change his diaper, and just by lifting his legs and compressing his ribcage against his heart, he would desat. That was not the case today, it was yesterday, but not today…..amazing!

We couldn’t be more thrilled with how restful and encouraging today was. What an answer to prayer. Hang tight, I hope for many more great announcements like this to come.

Joshua 1:9
“Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”

#ODAAT
#GoBeckett!