June 10, 2013

UPDATE (6/10/13)

I’m back in Upland again. Leah and I officially passed off the baton.
It’s sooo good to be together as a family, and even though it’s
short-lived at times, at least it’s “short-lived”…and we are fully
expecting/anticipating that to change sometime soon. I’ve got a lot to
go over in this update, but I’ll try to be brief and to-the-point.

I’ll begin with Beckett’s reflux issue. He has continued to reflux all
day today, but as I mentioned last night, we got an opportunity to
speak with the head Neonatologist today about this issue. However,
before that happened, Leah called me this morning with a great idea.
We aren’t sure it’ll work, but it’s definitely worth a shot. Beckett’s
food (/milk) gets, what’s called, fortified to a certain caloric
level. He, for a while, was up to 30 calories per feeding, but he is
now down to 27. The milk gets fortified with a formula like Gerber
Good Start or Pregestimil. Well, Leah remembered that while we were
over at St. V’s, the milk was being fortified with
Pregestimil…however, as soon as we came to Riley, they use Gerber Good
Start. We also noticed that his reflux has gotten significantly worse
since being here at Riley. Sooo, if you are connecting the dots…we
offered up the solution (Leah’s idea) to fortify the milk with
Pregestimil instead of the Gerber Good Start and see if that makes any
difference. It might, it might not…but like I said, it’s definitely
worth a shot. Babies reflux, we understand that, but if we can somehow
lesse n how much Beckett is doing it, it will definitely be a good
thing for him while still in this “critical” state.

Next, his flow on the VapoTherm is still on 3 liters. In fact, they
kept turning up his oxygen support (the FiO2) today after every reflux
“episode.” I think he can handle less support and flow, but its best
right now to just give him as much support as possible heading into
the Cardiac Cath. Speaking off…

Soooo, we heard some interesting news today. Cardiology had the
thought today “why wait”…turns out, they’d like to do Beckett’s Cath
this week sometime (preferably Thursday). Wow! That was a bit of a
shocker. Additionally, they said that if his hemodynamics look ok,
they will most likely review his case the following morning (Friday
morning) at the Cardiologist/Surgeon-Weekly-Friday-Morning-Meeting,
and could potentially schedule his next surgery sometime within the
next week or two. Again…Wow! Leah and I knew this day was
coming….eventually, but now that we are actually talking about it,
it’s gettin’ kinda scary! I’m excited (and a lil scared), but I’m
excited because I want to keep this train goin’. As far as I’m
concerned (taking into consideration my falling, messed-up, prideful
nature), I’m ready to take the lil rascal home….but all in due time,

Lastly, we got the results of the MRI back. It’s good news….and
interesting news. Let’s start with the good news. The clot is GONE!
What a praise! I am so thankful to know that is no longer an “issue”.
However, they did happen to notice some other “things”. I’m terrible
at explaining this kind of stuff, so try to hang in there as I use
severe layman’s lingo (and I’ll be brief). They saw some small “spots”
all throughout his brain, most likely some sort of left over blood
from some busted vessels. They are definitely “old” (I’m assuming
happened during the cardiac arrest back in January). It’s hard to tell
if they will have any negative effects on him cognitively, but they
are hoping and assuming they won’t. Additionally, his brain is a
little small. They said this can happen to babies with Beckett’s heart
condition, AND to babies who are on Ecmo. This could actually manifest
itself to affect him cognitively some, but again…we won’t really know
for a while until he’s actually developing more in areas such as
speech and learning. Lastly, they saw a small spot toward the middle
of his brain they are calling white-matter. It is technically an area
of tissue that has died due to injury. It’s a spot that can happen to
people after a stroke (which Beckett must have had sometime in the
past as they can tell it is old) and can definitely effect things like
motor skills, coordination, etc. Again, we won’t really ever know
until he really starts to learn how to walk and develop coordinating
types of things…but we are hopeful it won’t effect anything. They
followed up by saying, we’ve seen babies with very insignificant
findings struggle developmentally, and we’ve seen babies with
significant findings thrive. They said, “These are just images,
accurate prognosis is very difficult. He may be just fine, he may
struggle some, or he may struggle a lot. We just don’t know. This will
just be another thing we will be watching closely as he grows and
develops. (I hope I explained that “well”, and did it some justice).
But you know what, we tackle whatever we’re thrown if we just get to
keep our Beckett. I know that may either sound selfish, or it may
sound completely normal; I’m just trying to say that we clearly want
to “keep” Beckett, no matter what that may look like…but I truly do
offer him back to the Lord to use him however He may please.

One last thing, Beckett is so cool! He can give high-fives now! It’s
so fun to watch. You just put your hand in front of his face and say,
“high-five”, and he’ll slowly touch your hand palm-to-palm with his.
It’s precious. Ok, Ok…he may not really know he’s giving a “high-five”
as much as he just wants to touch your hand….but it’s great! Come
visit, maybe you’ll get a Beckett “high-five”!

Exodus 14:14
The Lord will fight for you, and you have only to be silent.


— with Leah ‘Whiteley’ Rupp at Riley Children’s Hospital.

4 thoughts on “June 10, 2013

  1. Praise God the clot is gone. Several things to add to the prayer list, but praying in faith believing that Beckett will just blow everyone’s minds with his developmental skills etc as time goes on. Counting on the Lord to fight for Beckett and the groans of the Holy Spirit on his behalf. Keep hanging in there, and I’ll keep praying for Beckett and his miracle.

  2. doriew says:

    Jonny, I truly feel like you should receive some kind of medical degree. You write and sound like an honest-to-goodness member of the medical team. We who tend to be so ignorant in these life changing matters. Thanks for taking the time to share with all of us. That precious little guy is in such good hands…not to mention being held so closely to God’s heart. Awaiting more good news daily! Doris

  3. Valerie House says:

    Thank you for your updates. Beckett has been on my mind a lot lately and I pray for him at various times throughout the day. He is such a fighter! Praise God that the clots are gone! I continue to pray for your strength and grace as you walk through this journey.

  4. child of God says:

    Praising God for so much good news! Thank you for relaying all of this information, it sure does help to specify prayer for Beckett. Praying for 100% healthy brain growth and function.

    Praying for another great day.

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