Heart of Beckett

UPDATE (1/28/13)

Happy (1 month) Birthday Beckett!

Well, everyone keeps saying how well his color looks and that they are very pleased with his uneventful weekend. Ever since his lil outbreak Thursday night, Beckett was put back on some medicine to support his heart again. As somewhat mentioned in my older posts, Beckett needs to be off any IV cardiac (heart) support meds and switched to oral before we can be transferred back over to the NICU for his next chapter in this recovery process. This then lead to the weaning of these meds over the next few days and Beckett instilling confidence with the Doctors that he is ready to move forward without that support. Soooo…..we continue to sit…and wait, and wait some more.

I can’t help but be reminded of Isaiah 40:31- but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint. — with Leah ‘Whiteley’ Rupp at Peyton Manning Children’s Hospital.

UPDATE (1/27/13)

‘No News is Good News’

I have very little to report other than another quiet day (so far). He’s been a lil moody this evening, but hasn’t raced his heart rate too high from it (so that’s good). Tomorrow is his 1 month old birthday….craaaazy! This has been one of the slowest AND fastest months of our lives! I can’t believe Beckett is already a month old (…..almost). All the Docs and Specialists will be back tomorrow and we may know more details for this week after morning ’rounds’. Have a good night y’all, I’ll post a more informative update tomorrow!

(thankful for a quiet weekend) — with Leah ‘Whiteley’ Rupp at Peyton Manning Children’s Hospital.

UPDATE (1/26/13)

Beckett had a great night. He has had no major ‘episodes’ since Thursday night and seems to be getting ‘better’ little-by-little each hour and each day. His surgeon came in today while I was holding him and asked ‘How’s our never ending saga doing?’. lol Beckett is well known around here, and many are still quite optimistic of his progress.

Continually asking and praying for a quiet weekend of rest, strength and healing!

James 1:6-8

…when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind. That person should not expect to receive anything from the Lord. Such a person is double-minded and unstable in all they do. — with Leah ‘Whiteley’ Rupp at Peyton Manning Children’s Hospital.

UPDATE (1/25/13)

Last night was interesting. After the Update I posted last night, Beckett threw his heart rate around for a few more hours…not nearly as intense as last week, yet severe enough to get our attention. Sooo, its pretty safe to say that we won’t be leaving the PICU today, and will most likely be here for at least a few more days (minimum).

-added clarity-

When arriving nearly a month ago (wow!) to Indy from Ft. Wayne, we were sent to St. Vincent’s NICU. Beckett was then transferred from the NICU to the PICU because of his heart condition. All heart surgeries for kids (at least here at St. Vincent’s) are done and managed at the PICU. Once his cardiac function is “healthy” enough to be discharged from the PICU, we are then transported back to the NICU for further care (continual weaning of pain medicine, relearning how to eat orally, etc etc).

The Doctor’s are watching him closely, but have expressed that this isn’t nearly as critical as other things we’ve already gone through. Beckett will be treated with various medication to strategically assist his heart while relearning to breath off the ventilator. Though this does feel like a minor setback, it’s basically another 3 steps forward 1 step back scenario. No use getting ahead of ourselves, Beckett will show us his pace one way or another. 😉

Psalm 57:7, 9, 10

My heart is steadfast, O God, my heart is steadfast;

I will sing and give praise.

I will praise You, O Lord, among the peoples;

I will sing to You among the nations.

For Your mercy reaches unto the heavens,

And Your truth unto the clouds. — with Leah ‘Whiteley’ Rupp at Peyton Manning Children’s Hospital.

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.