July 21, 2013

UPDATE (7/21/13)

Today has been a great day, other than the fact that Leah has been gone…her boys need her back! Beckett has been in a pretty good mood pretty much all day. There is one thing he had been “struggling” with the past 24-48 hours though. You may recall that he got behind on his Lasix a little when we were first transferred here to the heart center. Well, we’ve been trying to figure out why Beckett has begun to desat here-n-there to the 50’s when he’s sleeping perfectly sound. That’s pretty low. He always recovers, but it has been concerning to me (and the nurses). However, I should clarify that it hasn’t been that concerning to the cardiologists….so we should definitely find some level of peace in their steadfast demeanor concerning this little issue. Additionally, I have explained recently that Beckett has been withdrawing since the wean of his methadone this past week. Another viable option the cardiologist proposed is some mild discomfort still. Sooo, another thought when he becomes agitated is to introduce (or reintroduce) Ativan to Beckett. We tried it this morning, and it seemed to work well. It isn’t a narcotic (which is nice), but more-so just a drug typically used for anxiety….it has a calming element to it. Certainly we don’t want to use it too much (or ever, if we don’t have to), but we are thankful that it seems to be a good solution to a more successful and smooth wean of Beckett’s methadone over the next month or two.

On another note: I went golfing today! An old friend from my hometown took me out for 18 holes today, and though I played horribly bad, I truly had a great time. Thanks Jordan!

We are still on track for going home sometime this week. We are currently looking at possibly Wednesday, and possibly sometime in the afternoon (clearly, any of this can change at any moment). They still want to do another X-Ray, another Echo, they need to do a car seat study (which I think will be tomorrow), we need to go through some more training, we need to talk to the home care people (I think on Tuesday), and I think we are going to do a night of “parent care” one of these next few nights (where we sleep over with Beckett, administer all his drugs ourselves, mix and fortify his milk, etc). BUT, all this action means we are definitely getting close!

I’ve been wanting to address this for a little while now, but haven’t been sure as to how. I’m not necessarily advocating for a big extravaganza, but I did want some Uplanders (and whomever else would like to come) to feel invited to welcome Beckett home to our house. It situation may be short lived, but if you wanted to be there at/around our driveway while we pull in to celebrate with us as we walk him into the house, you’d be more than welcome. If nobody showed, no offense would be taken (as it most likely will be in the middle of the day sometime), but I’d be willing to post on Facebook and the website as we are leaving Indy so a projected time could be better assumed of our arrival. Again, not a big deal, and I assume we’ll just take him right inside to the air conditioned home, but it will definitely be quite the special moment for us! Message me, text me (if you have my number), comment on this post, or whatever you want to do if you think that would be something you’d be interested in.

Again…..we are sooo close. #ODAAT


— with Leah ‘Whiteley’ Rupp at Riley Hospital for Children at IU Health.

3 thoughts on “July 21, 2013

  1. Close is good. Fervently praying for Beckett, you and Leah.

  2. bekahmoser says:

    Soooooooo wish we could be standing in your yard to welcome Beckett home!!! I am sure I would be bawling for you guys and it would be such an awesome experience for our kids to see the answer to a prayer they have been praying daily for the last 6plus months “Jesus please help Beckett to come home.” Can we reenact it when we get back from vacation? :).

  3. doriew says:

    Deb and I are counting on seeing you all arrive home, but her hours at TU may prevent her
    being included. I now have a front porch swing and I will be keeping it warm while waiting. May this be only the first of many joyous and victorious moments in store for all of you!

    Doris and Deb

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