Heart of Beckett

UPDATE (10/19/16)
Whelp, if you saw the pic from earlier today, you learned that there is some serious talk about going home very soon. In fact, someone from our surgeon’s team came in and asked if we were interested in going home today. 😳 However, he then seemed to imply that he’d prefer waiting at least one more day, and to be honest, we were on the same page. You see, Beckett’s “numbers” need to be dialed in just a little more. He is trending in the right direction, but we would like from them to check his labs one more time tomorrow morning before we feel 100% comfortable taking him. With that said, we are fully confident the numbers will look great, in which we will then be homeward bound (yay!).
Today we played a lot. It was very fun. He was the most himself I’ve seen yet. We must have worn him out though because he slept for a very long time this afternoon. Once he woke, he showed off a little and walked down the hallway to the playroom. It was kinda funny, actually: when he was walking by a group of lady-nurses they kind of “applauded” him, which drew him to tears of embarrassment. It was cute though.
They just took off his steri strips (which were over his chest incision), so, there was some crying this evening…but all-n-all, he handled it quite well. Soooooo….I think we are going home tomorrow (that’s amazing!)! I can’t believe I’m even typing these words. Yet here we are. To think how far we’ve come, it’s even overwhelming from time-to-time.
Lastly, a friend of ours is graciously setting up a “Take Them A Meal” page (I’ll post the link soon). If you feel like encouraging us in that way, we certainly won’t turn it away. However, under no means do I want anyone to feel obligated to. Simple “Likes”, “Comments”, “Texts”, “Phone Calls” (a few of you have even sent packages) are very encouraging to us. We have felt very supported these past few weeks, and certainly the past few years. Thank you all for all your kind words, gifts, and certainly financial gifts (wow!)….we are tremendously grateful and inspired to pay-it-forward the best we can.
#GoBeckett

#ODAAT 

UPDATE (10/18/16)
If you couldn’t tell, I’ve been gone the past few nights. I went back home to get a few hours of work in, but now I’m back. I actually surprised Leah and showed up mid-day today. She thought I wasn’t coming until later this evening. It was quite nice though to have those few extra hours this afternoon with them.
Earlier this evening we were all playing in the “Play Room” with his mamaw and Leah’s Aunt Kathy when Beckett began to cough, which eventually led to him puking (sorry if that’s too graphic). Afterwards he leaned over to Leah and said, “Thank you for saving me.” I think it stunned her……I think our precious lil Beckett is “back.” 😏
Also, we have some great news! We are off oxygen support! Yay! We even had a visit from our actual cardiologists (he’s been out of the country), in which he is very VERY pleased with where we are at with Beckett right now. In fact, I think he is hopeful for us to be discharged within a few days (that is if Beckett continues to cooperate).
So, today was a BIG step in the right direction. We certainly don’t want to be discharged sooner than necessary, but we are obviously anxious to get home. One-Day-At-A-Time.
#GoBeckett

#ODAAT 

UPDATE (10/15/16)
Today was a good day. Slow and steady progress. It began with being greeted from one of Beckett’s nurses who use to take care of him 3 years ago. She couldn’t believe how big he’s gotten and said that he’s cuter than ever! We love seeing familiar faces like that…it makes us feel all the more comfortable when we leave (for Lunch, or things like that) and “feeling heard” when we share our concerns and goals.
With that said, Beckett stood and walked a few times today. He’s getting better at it and more confident. We played a lot today too (again), but this time he had more playmates as his grandparents from Ohio (my parents) as-well-as a surprise visit from his aunt (Leah’s sister). So, it was another fun day of progress and games.
He is certainly more himself:

Quick(er) to hug

Quick(er) to kiss

More giggles

And reengaging his strategic mischief

….it’s been more the “Beckett” we’re use to seeing. Welcome back, bub!
Whelp, that’s today. Wasn’t too eventful, just one step closer to home.
#GoBeckett

#ODAAT 

UPDATE (10/14/16)
Still kinda cranky today, but the day has ended really well. We try to keep him active (it’s good for him), but need to find a balance.
We played again in the toy room as-well-as some fun mat-time on the floor. We finally started getting some giggles again and spunkiness (is that a word?). We even tried to help him stand, but his legs were like spaghetti noodles (or, as Leah likes to explain it, what The Little Mermaid looked like when she was first learning to walk).
His sats have gotten better, but we still need to get him completely off his oxygen support. One of the nurse practitioners caught us off-guard and casually eluded to Beckett possibly being discharged as early as Sunday! 😳 Leah and I looked at each other and laughed in our heads together. We genuinely appreciated her optimism, but we are definitely more than 2 days out from being discharged. Don’t hear me wrong, I hope we are mistaken, but I think we’ll finally go home some day next week. In a nutshell, he needs to eventually start walking and get completely off his oxygen. As soon as he begins to play along with that game plan that’s when we’ll finally go home.
As Leah likes to remind me, “he just had open heart surgery a week ago.” Yes, yes…fair enough. I find that my patience teeters on reality and a passionate desire to just go home. When I finally take a deep breath I find perspective on being present and loving my wife and son the best I can today…remembering that none of us are guaranteed tomorrow and should fully embrace what today has afforded us. Surely we have all had days where an optimistic perspective is just too….well, optimistic. But certainly in my “daily struggles” I can easily find the blessing. To have a son nearly four years later to even console is a gift…..a miracle really! Anyways, I digress.
As always, thank you for the support and encouragement….we’re so so close! Oh, and thank you to all our visitors, we genuinely love it!
#GoBeckett

#ODAAT

UPDATE (10/13/16)
…still a lil cranky today, however, we had our moments of fun. We went down to the playroom a few times and even played some fun made-up games in his bed.
He did wake up today from his nap screaming with pain. So, he was given a little extra pain meds, additionally because they also surprised us with the news that they are planning on taking out his chest tubes. We were all in the room when they did it, and, to be honest, it was kinda gnarly. However, I think he liked it after it was done…a real “weight off his chest.” 😏
The surgeon came in again today to check up on him and said that he’s still looking good. They would like to “pull-off” some more fluid in his chest, but they are giving him plenty of diuretics to get that done.
He does look better everyday. Tomorrow will be one full week since his surgery, and I would say he’s done quite well!
I ran across a passage in my reading this morning that I remember embracing just a few short years ago when this journey began. It’s a passage that gave me great hope and peace, and thankfully came to fruition in more ways than I could have ever imagined.
John 9:2-3
2 “Rabbi,” his disciples asked him, “why was this man born blind? Was it because of his own sins or his parents’ sins?”
3 “It was not because of his sins or his parents’ sins,” Jesus answered. “This happened so the power of God could be seen in him.
Amen, right?
#GoBeckett

#ODAAT 

UPDATE (10/12/16)
I’m back. I fought through traffic jams and rush-hour this morning until I finally arrived at the hospital. Two days away felt like an eternity this time. The first thing I did was cuddle with him while awkwardly leaning over the side of his bed and putting my head next to his. What warms the heart is he will equally lean into my awkward embrace. Shortly after Leah took a nap while I held Beckett for a couple hours and we slowly dozed off for a bit (I literally live for those moments…they are very precious to me).
He is still a little “grumpy” today, but there were playful moments. He has a hard time understanding some of what he can and can’t do. Towards the end of the evening we were table to take him on a wagon ride around the unit until we had a pit-stop in the toy room. He was sitting up playing trains on a table until he eventually seemed a little worn out. We called it “quits” and brought him back to his room (which was a good call).
They are continuing some pain meds to get him over the “movement pains,” which we only hope we can stay ahead of (if that makes sense). It’s just not desirable to get “behind” on the pain tolerance and have to try and “catch him up.” It’s a balance, but that’s where we skirt the line of advocating for him and trusting the professionals.
The nurse called in some Physical Therapy and maybe even Speech Therapy (for his oral feeds…don’t worry Kendra, you’re not being replaced) so he won’t fall too far behind while he’s hospitalized.
Other than that, we are taking deep breathes and trying to enjoy each day and each moment…..I encourage you all to do the same. 😏 Thanks for the constant encouragement, I’m confident it means more than you’ll ever know.
#GoBeckett

#ODAAT 

UPDATE (10/11/16)
If you’ve been following along this past week, you would have heard that I’ve been back home since last night. Naturally, I am much more inept to attempt an update, but Leah has her hands full this evening.
Everything is “ok” with Beckett, he’s just had a really challenging day. Each day he seems to become more-n-more “comfortable” with his environment (the hospital, the nurses, the doctors, the incessant beeping, all the cables attached to him, etc). With that said, he’s becoming more active while simultaneously being weaned off his pain meds. Unfortunately this may have resulted in some unintentional discomfort. His body is still healing, but the more he moves around in his bed, the more uncomfortable he will be (at least for a little while during these first few days/weeks). Don’t hear me wrong, they want him to “move” but he may have just overdone himself slightly. Anyways, in short, he’s been very agitated today…not really in the mood to talk to anyone or do anything. This can certainly be draining on a mother who just wants to see her son get better and not in pain.
So, that’s the “bad news.” The good news is that our surgeon stopped in again today and told Leah that he thinks Beckett is still looking good. Furthermore, I just got a text from Leah that they just took out his art line. For us non-medical people….it’s just one less wire hooked up to him. But, if curious, it’s a catheter that is inserted in one’s artery to help more accurately measure someone’s blood pressure in more of a “real time” manner. Also, they may be moving Beckett tonight….yet another agitating/tiring thing. Moving him is a good thing, however. It basically means they think he’s doing well enough to get him out of the CV-ICU to a step-down “Heart Center”…one step closer to going home. The tiring part I was referring to is that he hasn’t gotten much sleep today….and while Leah was able to get him asleep around 9:15pm (finally) they came in and woke him up to possibly move him. She’s tired, he’s tired/cranky…I think they all just need a good nights rest heading into another long day tomorrow.
We have a lot to be thankful for. The news I’m delivering could have been much more devastating. If you’ve followed this journey long enough, you’ve read some of the more devastating posts. Those aren’t fun to write. So, I’ll say (type) it again…we have a lot to be thankful for. Beckett has been doing really well, and everyone seems to be quite pleased with his progress. Nearing the end of this marathon, I think we just need some stamina and encouragement while we attempt to sprint through the finish line. We may still have another few weeks in the hospital, but that is nothing compared to months (like our earlier season).
One-Day-At-A-Time
#GoBeckett

#ODAAT 

UPDATE (10/8/16)
A brief update:

All-n-All, Beckett is doing well. We left his room last night a little before midnight and stayed in the Ronald McDonald house in the hospital. As soon as we climbed into bed we received a call from his room that they just extubated him and that he was asking for us. So, we got changed and came right back up. Sadly, he just cried the whole time about his ouchies and had a pretty scratchy throat.
Today hasn’t been much different. We have been able to give him a little bit of water, but not enough to suffice his cries. He’s been very agitated all day, even with the presence of grandparents and a 4 foot tall balloon of Mickey. It’s been kind of draining, but hopefully not an accurate precursor of what’s to come.
His sats aren’t quite where they need to be, but the doctors appears to be optimistically cautious.
I’m not sure if we’ll post again later tonight, but I would assume if you don’t hear from me it’s usually a “good thing.” As always, thank you SO much for the consistent encouragement, we really do appreciate it very much!
#GoBeckett

#ODAAT