May 31, 2013

UPDATE (5/31/13)

Today has been yet another quiet and uneventful day. Beckett’s flow on his VapoTherm was turned down to 3.5, and he’s been tolerating it really well. And to clarify, when we’ve talked about his “oxygen support”, aka: VapoTherm, we watch two specific numbers. The “flow”, which, in essence, is the pressure with which the VapoTherm is blowing. The FiO2, or oxygen support, is the other number we discuss often, which is the percent if oxygen in the air flow; 21% is what is referred to as “room air”, which is what you and I breathe, and any number above that is additional support he is requiring. So, these two numbers, the Flow and the FiO2 affect his actual blood/oxygen saturation level, which is directly affected by his heart. Sooo, we watch these numbers closely. Beckett is currently suppose to maintain saturation levels between 70-85; you and I are at around 100…in which after his final surgery at 2 years old, he should be able to hit 95 or so. In theory, we continue to wean him down on the VapoTherm to lower and lower levels of flow and hope that his FiO2 will remain at 21%. Once off of VapoTherm he will be hooked up for Oxygen through the Nasal Cannula (like he is now…it won’t look much different), but won’t need the fancy VapoTherm which heats and humidifies the air. This then is yet another step closer to GOING HOME and also doing another MRV to check on his blood clot that he got in his brain from his cardiac arrest the night after his first surgery during the 45 minutes of CPR. I’d love to hear a status update on that, and we are praying that it’s long gone!

I’m sitting next to Leah right now as she holds Beckett….he’s as limp as a wet noodle in her arms….and it’s sooo cute. He’s now 13 lbs 11 oz, which is great, and they have increased his feedings once again.

Leah said that I must conclude with a funny little story from earlier today. And I must warn you, this story contains graphic material…but I’m not sure how else to properly communicate it:

I try to help out as much as I can with Beckett, but Leah is a diaper (and all-things-medical) champ….I mean, she is a nurse. 😉 So, earlier this evening, I was changing Beckett’s diaper and Leah placed next to me a bottle of Sensicare….which is for rashes and such. Beckett may have had a rash developing around his privates, particularly under his scrotum, so I was wiping it on Beckett, and of course, had squeezed out an excessive amount on my finger to spread. I got it rubbed in as good as I could. I then had it all over my gloves and fingers. I decided to pretend to wipe it on Leah’s face appreciating the forethought of her reaction of disgust, when unfortunately she plunged her head forward for some reason, not seeing what I was already in motion doing. My finger, coincidently, smeared the freshly scrotum-tainted Senisicare onto Leah’s forehead. Though I can tend to be a bit of a prankster at times, this was truly not my intent. We both began to laugh pretty hard (out of shock)…but my laughter was more apologetic, as Leah’s laughter was a bit more of a…..ummm, “I can’t believe you just did that” kind of a laugh. 😉 Anyways, it was really funny, and we were even able to get a picture of it.

Anyways, it’s been another good day (which we will never get board or unappreciative saying). Thank you for your consistent prayers. God is good….ALL the time! Do you truly believe that? We are learning…


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

5 thoughts on “May 31, 2013

  1. Aunt Raelyn says:

    Yes! I have been waiting to hear a funny story like this from you guys. So glad you can laugh about it in the midst of all of this. Love ya! Praying for continually progress so you can take Beckett home. Can’t wait to celebrate that day!

  2. Sharon Crigger-Stokan says:

    Loved reading this “normal day in your life” post. These times are so precious and good for your family. Even though Beckett may not understand what is really going on, he can sense a fun-loving mommy and daddy and that is a good thing for him to hear and for. his little heart to feel. Always praying…

  3. Yes, Jonny, I do TRULY believe that God is good…all the time! We are just too preoccupied with what WE want Him to do that we may miss that. I tell myself that over and over again. One would think at 82 that it has finally funk in! Believe it even in the scary times. Hope these encouraging days continue! Me next door

  4. doriew says:

    Now that’s funny! Laughter is so good for the soul…keep it up (not necessarily in that mode).
    And for the record, God is good..all the time! Even on the dark days. At 82, I have experienced this again and again. I was too blind to see it often, but it was there.
    Keep believing it. Me the neighbor

  5. child of God says:

    Lol!!! Awkward moment but one that you will remember for a long time. 🙂
    Yes!! God is good all of the time!!
    Praying and praying for more good days and a 100% healthy Beckett.

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