Heart of Beckett

Beckett has had a good day. Let’s begin like that. We came into his
room this morning to be greeted by another new nurse practitioner. She
was reading through his meds and mentioned that Beckett’s milrinone
was scheduled to be weaned again today. Needless to say, that caught
my attention. I couldn’t help but to inquire about the need to wean
him off of a medication that seemed to be the primary cause for his
“episode” on Friday. I was under the impression that the plan was to,
as the Cardiologist said, “Let the dust settle this weekend”. A wean
right now didn’t seem to fit the mutually understood agenda. The nurse
practitioner was very patient with my concerns and assured me that my
questions are valid and she’d be more than willing to contact
Cardiology for me. A few minutes later I was then on the phone with
one of our (many) Cardiologists. It was actually a very pleasant
conversation as I attempted to politely state my concern yet reinforce
that I want to trust his judgement with my son. We agreed to wean his
milrinone just a very little bit today (.1), but found a compromise to
wean the milrinone every other day, rather than his proposed plan for
every 24 hours. I respectfully said that “Whatever speed you guys
determine is slow for Beckett, go just a little bit slower than that
and you may be getting close to an appropriate speed.” I’m just trying
to do all that I can to advocate for him as a parent, but trust and
respect their professional and educated decisions. It can be
difficult, but both Leah and I have been reinforced multiple times
today that we “aren’t those parents”. The Cardiologist and the nurse
practitioner assured us that if we “were those parents”, we’d know it
by-way-of restrictions, mandatory parent/doctor conferences, etc.

Either way, Beckett seems to be doing much better once again. As Leah
mentioned yesterday, and as I hope you’ve had the chance to see from
the posted videos, Beckett is still such a little cutie. He’s “talkin”
a lot more and is actually doing developmentally impressive things
like playing with his toys and even clasping his hands together across
his chest. This is all really encouraging and just the cherry-on-top
to his overall recovery.

We hope for fewer (or NO more) set-backs from here on out. But we
continue to enjoy the day at hand and truly accept it as a gift, and
not something we deserve. I’m blessed to have an amazing son and a
wonderful wife. And we are also consistently reminded that our vast
support system (you who are reading this right now) is not necessarily
normal. We are so blessed to have so many people following, praying,
giving, visiting and sharing this journey right alongside of us. I
hope that we never post an update with a tone that takes any of that
for granted. And to our God and Savior, You have never been so “real”
to us in our lives as you are now. We are reminded that suffering is
apportioned to us as individually designed expert therapy…it is not
a punishment. The purpose of any trials or suffering is that our faith
may be refined, holiness might be enlarged, a soul might be saved and
that God may be glorified! To God be ALL the glory!

Please pray as Leah heads back to work once again tomorrow and as I
wrestle with finishing these next few weeks strong in my studies. But
truly more important than that, please continue to pray and plead for
Beckett’s healing and to welcome the Lord’s will to continue to be
done in and through his life!

#ODAAT
#GoBeckett!

Sooo…..Beckett had a good night. In fact, when I got to his room he was on just a nasal cannula, rather than his VapoTherm! Wow, that was awesome! They had also taken out his IV from his head, which just made me smile.

However, we had a fairly eventful morning. As I walked up to his room (in typical Beckett fashion) Beckett began to cry, yet somehow maintaining a low heart rate in the 90s and 80s (which is not like him). He was sweaty and cold at the same time. It wasn’t something to necessarily freak out about quite yet, but they decided to restart some of his meds and run a bunch of tests.

I stepped out for a moment to update Leah (always nervous to make those calls while she is at work to hopefully appropriately inform her while not freak her out). I text a few family and friends with an update, but walked straight back to his room. There were even more doctors around his room now…which is never a good sign. The Cardiologist was just standing at Beckett’s door watching him closely. They drew a blood gas to monitor some of his “levels” and noticed that a few were off. After the Cardiologist gave specific instructions to the nurses he turned and told me and said that he’s continuing to learn and understand Beckett. He said that he thinks Beckett fooled him (which we know is often the case). Beckett was responding so well to the weaning of his milrinone (IV Heart Med), that he may have weaned him off of it a little too quick and/or didn’t offset the wean correctly enough with captopril (the Oral Heart Med). He said he learned a valuable lesson to go a little slower with Beckett going forward. Though I’m glad they are finally/truly learning this lesson over here at Riley, I can’t help but wish it could have been learned another way. We tried to warn them, but to their defense, Beckett is a little trickster. I guess the proper perspective is to be thankful that this appears to be back under control. They are thinking that he just got out of balance a lil, but they are hopefully back on track now once again. (….it’s just always so intense when there are tons of doctors and nurses all around his room :-\) One of the last things the Cardiologist said before he walked away was that they may need to reintubate him once again for a few days to help him get over this hump. Thankfully that was not the case. Though Beckett has been breathing a little fast today, he looks much better tonight than he was this morning. Unfortunately they put the IV back in his head for some of the meds they restarted today (sooo, no new picture for now :-\).

Leah is back again from work. We had a horrible communication issue today. I had been texting her all throughout the day with updates, and apparently she wasn’t receiving any of them. She then jumped to conclusions that things were so bad today that I didn’t even have time to text her. I just assumed she wasn’t texting me back because my updates were so sufficient and I assumed she may be too busy to actually respond (I mean, she does work in an ER). I eventually called her simply out of curiosity as to why she hasn’t been responding and to give her a verbal update, and I guess she had to walk out of a room from a doctor saying “My son is in the hospital, I have to take this call”. Apparently he wasn’t very familiar with our situation….sooo, oops. To make it worse, I guess this lack of communication drew Leah to tears multiple times today. This just breaks my heart. These “little things” in addition to Beckett’s day only magnified our stress. Today was supposed to be a make-up day for me with my schooling…and that didn’t really happen. Beckett and my family are my priority, but my schooling responsibilities are relentlessly looming and hardly feel like an opportunity right now (though I wish I could assume that perspective). I just want to finish strong and properly prioritize my responsibilities…whatever that actually looks like.

Soooo, lets just continue to praise God for his faithfulness (even in these hard times), and pray for continual healing.

#ODAAT
#GoBeckett!

So, even though I wasn’t with Beckett for most of the day, I will attempt an update for everyone. Leah is back home once again (#TagTeam) and is heading back to work (tomorrow) for yet another 12 hour shift. I have been in school the past few days…and quite frankly, am a little overwhelmed with all that needs to be done within the next few weeks. God has helped me thus far, so it’s simply a lack of faith to challenge the possibility of finishing this semester strong. I know “I” can do this, I’m just not sure how.

With that being said, my “motivation” is doing well once again today….his name is Beckett. Have you heard of him? 😉 Riley Hospital has definitely/officially caught the “Beckett Bug”. Leah said that doctors, nurses, cardiologists, etc stop by frequently with what seems to be a routine “checkup” but always later appears to be more like a “check-out”. I don’t really mind though. It’s like show-n-tell. “Hey, look everyone…look how awesome my son is!” #ProudDaddy But in all seriousness, Beckett is such a cutie, and if you think his pictures are cute, you should just see him in person. Also, and if you’ve been wondering, I haven’t posted a picture in a while mainly because he currently has an IV in his head. Apparently that’s normal, and not a big deal, but it’s kinda gnarly, at first, so I’m anxious for that to go away. Once that IV is gone (which may be a soon as tomorrow), I promise to post another picture soon.

Beckett had another echo once again today (which is basically a fairy accurate “picture” of his heart and heart function). The results are supposedly showing very little change since last week when he first got here, but the few areas it may have changed some look a little bit better. They are saying that this is “good”. Surely we’d like to hear that everything looks great, but I think they’ve literally said, “everything looks ‘Beckett good’”…sooo, that’s good, I guess. They have completely weaned him off his milrinone (which is a med that helps his heart), and yet his heart function still looks really good (or, “Beckett good”). These are definitely things we enjoy hearing, especially as it is “good news” pertaining to his heart. That’s awesome!

His VapoTherm is weaned down to 2 liters and he is still on room air (21%). If you’ve been following these post for a while, that should make some ssense, but if not…it basically means that he’s doing really well thus far from a respiratory standpoint.

PT (Physical Therapy) and OT (Occupational Therapy) are back once again. Leah said that he’s been doing well with that too. Similar to PT (kinda) is his new “trick”, which involves playing with some hanging toys in his crib. They dangle right above his chest/belly, and he just loves batting them around. It is so darn cute!

I think there have been a few other minor changes, but I cannot recall what they are at the moment. I know that they spoke with Leah about the supposed “game-plan” we’ve been waiting on (Beckett has had a lot of bumps that have needed to be taken care of before we can really get to a “game-plan”), and it looks like that may happen sometime next week. I think the current plan has been to continue to just get him more stable and wean him off of some of his support meds. We want to know things like: When are we going home? Are we going home before the second surgery? Etc? Etc? But I don’t think those questions are really answerable quite yet, but it appears that we are getting close (and by “close”, I mean to answering those questions…not necessarily going home quite yet).

We are truly grateful for this past week of progress. Grateful to the Doctors and Nurses here at Riley. Grateful that his condition was caught back at Lutheran in Ft Wayne. Grateful for all that Peyton Manning Children’s Hospital did for him (saving his life…multiple times). And definitely grateful for all that the Women’s Hospital was able to do for him during his challenging chapter of infections, respiratory issues, etc. etc. We are thankful he is still here with us for yet another day. And we are thankful to our God. I am so amazed at all the legitimate miracles God has done in and through my son. There have been so many things the Doctors can’t even explain, “things” that only God could have been present in. May we all (even you who are reading this) be forever changed by the story of Beckett. To love deeper. To pray harder. And to acknowledge our God in and through the big AND little things. He is present, and He cares. May we always be people of gratitude, both through the difficult times and certainly in the easy. God, you are sovereign. I give you all the glory, honor and praise for all that you’ve done, are doing, and are yet to do.

#ODAAT
#GoBeckett!

Sorry these past few updates are so brief….but that should be translated as a good thing, as there is not much to really update y’all on (in comparison to the past few months).

– Beckett’s direct bili has come down once again! Love it!
– They did his test today and discovered some lingering sludge (yes, “sludge” is the technical term they actually use with me). So they’ve decided to keep the tube in for now and flush it with saline ever so often (on a schedule), but the tube may come out as soon as tomorrow or Wednesday if his numbers continue to improve like they are.
– They will be reevaluating his overall game-plan either tomorrow or Wednesday now (which we are clearly eager to hear).
– They did, and have, adjusted a few of his meds today from IV to oral….which concerns Leah and I. However, we have obviously shared our concerns and have warned them what to be on the lookout for. He can’t stay on these IV meds forever….soooo, here we go again. :-\ They assured us that they will go “slow”….sooo, we’ll just take it a day at a time and see what happens.
– I surprised Leah tonight and had all of Beckett’s decorations hung for when she got back from a long day of work. …..I could tell it made her happy. Just tryin’ to make things a lil homier, ya know?

More miraculous updates are to come….I just know it! #perspective

#ODAAT
#GoBeckett!