February 25, 2013

UPDATE (2/25/13)
Hey everyone, sorry our updates have become more sparse. We do try very hard to do at least one per day, but oftentimes we aren’t able to even get to it until late in the evening (slash) right before we go to bed…like, right now. Life is starting to catch up to us some. Not only have things with Beckett been a little more hectic the past 24-48 hours, we are dealing with things like being on the phone with chase bank about our mortgage for over an hour. But that’s life, and we learn to flex and roll with what comes our way. With all that being said, lets get to “talking” about who y’all are really interested in.Beckett has had an interesting past few days. If you read Leah’s post from last night, we’ve had a number of things to truly be thankful for, yet some fairly disappointing news as well. Let me break it down and update you tonight by way of a list.

The Good
– Beckett is OFF VapoTherm, and is rocking it! In fact, multiple times today we’d look at him and his nasal cannula is out of his nose under his lip, or even in his mouth…yet his oxygen levels have been great. We are totally expecting him to possibly come off of oxygen altogether sometime soon!
– Beckett’s MRSA is looking better. They did a focused ultrasound on his source of infection and concluded that it is still external. So that’s great! (we don’t want systemic)
– He fell asleep in my arms tonight and remained asleep as we put him back in his crib. This hasn’t happened for at least a week now (possibly due to the tea Leah was talking about…#caffeine). It was quite nice, actually, to walk out of the room watching him totally conked out.
– My brother Joshua and his wife Julia got to see Beckett again today, and Julia got to hold him for the first time. It was a great cap to a great weekend that both them and many others helped make happen.

The Bad
– We spoke with the Infection/Disease Doctor today. He was encouraging in some sense, but also somewhat troubling. He did his job…but in doing so he had to explain how “insignificant” MRSA can be, OR how “devastating” this could be for Beckett. Beckett is on heavy antibiotics, and they are treating this very aggressively (taking no chances…which I certainly am appreciative of). It’s scary, and yet another thing my poor little son has to deal with now…but he’s pulled through so much worse. We are being told that he will be in isolation (which means we have to wear these yellow gowns and purple gloves while in his room) until he is discharged to come home. It’s kind of awkward, hot, and inconvenient…but we’ll do what we’re told if it’s gonna help Beckett.
– He was poked and prodded what seemed like a hundred times today. At one point I could hardly handle it anymore and had to stand up and just walk around the room (which it’s a pretty small room…so I was probably more-so just spinning in circles). Leah and I both have our breaking points…and unfortunately I believe she found hers a few times throughout the weekend, and I sniffed mine a few time throughout today. Beckett cried and cried today (and rightfully so) after each time he got poked for some other new reason. Poor little dude, he’s been a lil human pincushion. (which leads me to my next point)
– Beckett will be getting his PICC line back tomorrow. This is what he had last week that I had the opportunity to “help” pull out. A small part of me had this feeling of “I hope we won’t need to put this back in here again”. Lo-n-behold, he needs it back. In the long run, this is a good thing because they will be able to pull blood from this much easier and even administer medicine through it. So, I guess it’s a good thing…but it’s still a bummer, and I’m sure Beckett isn’t gonna enjoy it.
– I’ve also made the difficult decision to miss my very first class of grad school tomorrow. :-\ This was a difficult decision, but I did/do have full support from my faculty and classmates…but I’m just trying to do my best to keep up and appear as if this is entirely doable. Though it truly may be doable…balancing my schooling with supporting my wife, my son, normal life/bills/etc has truly been quite taxing on every level (emotional, spiritual, physical, mental….). Nobody told me this would be easy though, and we are truly blessed with an amazing support system. To God be the glory…just another opportunity to be reminded to rely on him and him alone, right? One day at a time….

Beckett has had setbacks, but nearly every time we’ve had a setback we’ve had the opportunity to see why (which isn’t expected, and is certain not a guarantee). Just last night we spoke with a family who was told their child may need to be put on Ecmo. Ecmo is what Beckett was on for 9 days. It’s a scary beast, but is clearly intended to help. We were able to gently tell this family the truth about it, but also instill a sense of hope and peace. It was a great opportunity, and I’m thankful for all the opportunities Beckett’s lil life of 2 months has had to minister to so many. This has been so humbling.

I want to conclude with my personal thank you for the benefits this past weekend. I’m pretty much speechless, but will do my best to muster up a few words. Clearly I must say “thank you”. Leah and I are truly blown away by the generosity of so many of you. We feel so loved, and yet, feel as if Beckett is truly loved all the more. So many of you are thinking and praying for him, and I couldn’t ask for more…I truly couldn’t. And financially, you all were so wildly generous….I’m not even quite sure what words to type next. I guess, “thank you”….but that hardly seems sufficient. And to all of you who helped organize, run, cook, bake, clean, etc, etc, etc….again, not sure what else to say other than “thank you”. In a very humble manner, I must say that I do believe Beckett is worth it…but I hardly feel worth it to have such an amazing son like him. You all are in for quite the treat when you get the chance to see/meet him in person some day! But anyways, again…thank you!

I’ll wrap up this update with a quote from Ernest Hemingway:
“It is good to have an end to journey toward; but it is the journey that matters, in the end”
Love you guys!

— with Leah ‘Whiteley’ Rupp atSt. Vincent’s Women’s Hospital.

One thought on “February 25, 2013

  1. Diana M says:

    Jonny and Leah,

    I fell asleep last night thinking about Leah’s post and praying. When I think of your unfailing love for Beckett, the way you are always beside him, the way you are always looking out for his best interest, the way you tell others about the wonder of his life, I can only think of the Father’s protecting, perfect love for us. Your love is a living testament of the Father’s, not just to your son, but to all of us. Praying that this day you would feel His strong gentle arms holding you, just like you hold your own son.

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