Heart of Beckett

UPDATE (1/25/13) -goodnight-

As mentioned in my post earlier today, Beckett was put back on some medication to help support his heart function and wean his pain medication a little less aggressively. This (so far) has successfully given Beckett a pretty decent day. PTL

This seems to be our general theme for each weekend, but once again the game plan for this weekend is to hopefully just chill and be as uneventful as possible. Beckett needs to continue to gain his strength and become more and more acclimated to breathing without the ventilator. Please pray for boring updates 😉 this weekend and continual progress!

I must conclude with a brief update of our friends here and their son Henry. We were informed that Henry pulled out his ventilator tube last night, which was kind of crazy news, BUT he was handling it ok, so they left him off it nearly all day until a few hours ago when they had to quickly reintubate him. Though that is certainly discouraging news, he WAS successfully extubated for many hours today. Though frustration is a natural emotion, please pray for peace and confidence that this was progress, just slow moving.

Thanks everyone, have a great night and a great weekend! — with Leah ‘Whiteley’ Rupp at Peyton Manning Children’s Hospital.

UPDATE (1/24/13) -goodnight-

Welcome back to the unfortunate stereotypical ‘Beckett Jude Update’:

Beckett did have another ‘good’ day today….until about an hour ago. Though it wasn’t ‘catastrophic’, Beckett had a mild temper-tantrum where his heart rate raced up a lil and he kind of through his oxygen saturation numbers around as well. The Doctors do have some theories as to why this happened and will be closely monitoring him throughout the night. It wasn’t a fun hour or so, and could quite possibly stunt the opportunity to be transferred to the NICU tomorrow….but it could have been much much worse (we’re truly counting our blessings). As always, please hang in there with us….its gonna be ok. — with Leah ‘Whiteley’ Rupp at Peyton Manning Children’s Hospital.

UPDATE (1/24/13)

– a lil drama…but happy ending-

Beckett had a good night (again), in which we are clearly so thankful for! However, we have been anxious about a few things:

1) The results of another ‘Echo’ done yesterday on his chest.

2) And, after this morning’s CBC (Complete Blood Count), Beckett’s Platelet Count dropped from 263 to 9….9! That’s not good.

Sooo….the results of the ‘Echo’ were good! For some reason I was really nervous about that one, but everything in his chest looks ‘good’.

Secondly, the Platelet ‘Issue’: In a nutshell, they think it was a fluke. You obviously cannot be too careful about these kind of things, but we were kind of waiting anxiously for the results. They ended up giving him more Platelets to be safe, but they think he’s lookin’ quite good.

In fact, he’s looking soooo good, thaaaaaaat: they just told us that they may be taking Beckett to the NICU tomorrow. What?!?! That’s huge! Basically, Beckett is nearly considered ‘Stable’ (with a capital ‘S’) from a Cardiac Standpoint. This is crazy, and so exciting! We truly are taking great strides in the right direction.

I’d like to conclude this update with some scripture from Psalm 103:1-2 –

Let all that I am praise the Lord; with my whole heart, I will praise his holy name.

Let all that I am praise the Lord; may I never forget the good things he does for me. — with Leah ‘Whiteley’ Rupp at Peyton Manning Children’s Hospital.

UPDATE (1/23/13) -goodnight-

What a great day, and a great ‘win’ (did y’all see our pic from this morning?)! We are only a few hours away from our ’12 hour window’ (which is just a general timeframe), and Beckett is rocking it. In fact, the nasal cannula has continually fallen out of his nose the past few hours and he’s still holding strong stats on his own. Similar to when he was taken off Ecmo, I’m nervous to go to sleep tonight without his ventilator….but I really do think he’ll be just fine. This has yet been another great milestone for lil Beckett…and I am genuinely so thrilled and proud of his progress! Go Beckett!!

[Please keep praying for Henry (our new friend’s son) who is battling Leukemia. They have received word that all traces of his Leukemia are gone(!), but they are now fighting an allergic reaction and he is still struggling to successfully Extubate. Great news about the Leukemia – Frustrating/Discouraging news about the other issues. Thanks.] — with Leah ‘Whiteley’ Rupp at Peyton Manning Children’s Hospital.

UPDATE (1/22/13) -goodnight-

Beckett’s had another good day (so far). We had more friends and family come visit again, and a relaxing afternoon/evening of just holding him…even Grandma got a chance this time.

The current buzz around here is that the Extubation may commence ‘early morning’ tomorrow morning. …..wow…..what an exciting next step! We have been warned that this may not be successful the first time (that just happens). Which reminds me: Please pray for some friends of ours we’ve met here whose son has Leukemia. They have certainly had there ups and downs (like us), and have attempted to Extubate their son (Henry) 3 times (3rd time today), and he just isn’t ready yet. Though they still have options, this can be very disheartening. Please keep them in mind and in your prayers as they work through this as a family. They have been very supportive of us during our journey, and we certainly would like to reciprocate!

(lastly, stay tuned as we are putting together a lil website for Beckett…for all those who’d like to follow outside of Facebook) — with Leah ‘Whiteley’ Rupp at Peyton Manning Children’s Hospital.

UPDATE (1/22/13)

I’ll begin by saying that we had another good night. We were presented with news this morning that they may attempt to Extubate Beckett sometime today, however, after ’rounds’, the doctor decided to just really wean him down to bare-bones on his ventilator and then try to Extubate him tomorrow. All the nurses seem very excited about this for us, and though we too are excited, this is yet another ‘crutch’ for Beckett that we are nervous to take away. However, taking into consideration our hesitation, we really are very excited to see our son’s entire face once again without all the tape and tubes.

This is the update thus far….it’s been a nice uneventful, slow-progress type of day.

Matthew 11:28-29 — with Leah ‘Whiteley’ Rupp at Peyton Manning Children’s Hospital.

UPDATE (1/21/13) -goodnight-

It’s been another great day. After ’rounds’, one of Beckett’s doctors said, ‘It’s time to start power-weaning!’. Our first thoughts were something like, ‘ummm, ok….here we go again’. They turned down some of his ventilator settings quite a lot this morning, and he handled it like a champ……sooo, they turned him down some more. The original intent was to have him Extubated by Friday (as I mentioned in my earlier post), but they are now saying possibly tomorrow or Wednesday! With that being said, we have learned our lesson that Beckett will go at his pace and is not shy to remind us who is in control (he’s got quite the attitude….I think he gets that from his mom ;-)). Soooo, as I said, another great day! We even had a friend visit from Illinois, along with constant messages, posts, and words of encouragement from so many of you who’ve been reading these updates. We even heard that the infamous Ivanhoes MIGHT have a Blue Ribbon fastened out front of their store…we’re hoping for free Ice Cream for life for lil Beckett. j/k (I’m trying to intentionally cut the proverbial tension developed over the past few weeks by lightening the tone a lil with this update) We are very pleased, yet each beep in his room, whether ‘serious’ or not, still quickly raises our brows. It’s quite funny to watch the nurses ‘fight’ to be put with Beckett for their shift….he’s already stealing all the ladies’ hearts.

And as always, thank you all for all the prayers and support! This journey would have been horribly lonely and discouraging without each of you.

I’d like to attempt to quickly do a brief ‘shout-out’ of thanks: our ‘Detroit’ Friends and Family (Evident, Vox, Apple, Bridgeway, DMC, UDM, etc..), Gaylord, Archbold, EMC/FEC, Chicago, Wheaton College, Bethel College, The Castle, Taylor University, Upland, Miracle Camp, LCS, St Joe’s, even all those we’ve actually never met all across the country and even around the globe, and certainly our close family and friends (…and all who I’m missing, in which I’m so sorry). Thanks to you all!! Lets keep this progress going….Go Beckett! — with Leah ‘Whiteley’ Rupp at Peyton Manning Children’s Hospital.