Heart of Beckett

UPDATE (8/27/13)

What a crazy night/day. Yesterday, being discharged, was amazingly similar to the first time we were discharged from the hospital. Ironically, by-the-way, we were discharged this time exactly one month from the day we had to readmit him. Anyways, it was another day of “hurry up and wait”. I got to the hospital early, met with the Cardiologist, got everyone and everything on the same page (because we really needed to be discharged from the hospital by 1:30pm…at the latest). I was scheduled (time-slotted) to conduct my research to nearly 500 freshman students at 3:30pm, and really only had/have one opportunity to get this done. If I missed it, there is a seriously good chance I’d have to almost start over on my Thesis. Well, we were pretty much done with everything (to be discharged) by around 11:30am. They brought us the discharge paperwork, and Leah observed that it wasn’t done right (to later regret even bringing it up), so they had to take it back and redo it. Furthermore, we were shown Beckett’s wean schedule, in which we noticed was way too quick of a wean for Beckett (found out the pharmacist who put it together didn’t know Beckett very well because the primary pharmacist was not working that day). Soooo…..that had to be redone as well.
Uh Oh. (pertaining to my deadline)
Long story short, we waited and waited and waited until I literally needed to leave or I would be late for my research. Truly I would prefer to leave with my wife and son (and would be further annoyed if I left to find out they were discharged 15 minutes later). Well, the nurse overheard me say to Leah that I gotta go, and she called into the room “I got it!” Soooo, we got the new paperwork, packed him/everything all up, and finally left! Yay!!!!

By the time we actually left, I was cutting it close…and of course, It seemed like we were getting caught behind every semi trying to pass another semi (huge pet-peeve of mine). Clearly, I was not going to speed….but I started getting a lil antsy. We actually pulled up to the building I was doing the research in at about 3:28pm (no joke). Leah drove the rest of the way home, and afterwards, I solicited a ride home from a friend I bumped into.
Done. And Done.

Concerning today and last night. Leah, her sister and mother were drawing up all if Beckett’s meds and we realized that the hospital did not give us scripts to 3 of Beckett’s critical meds. Unfortunately we did not catch this until Beckett needed one of them. So, we called the hospital, and I ran up to a CVS that took an hour to fill the scripts. BUT, we got them!

Lastly, Beckett decided he didn’t really want to sleep last night. We had him to sleep by around 11:30pm, for him to only then wake up by around midnight….and stay awake until about 3:00am or 4:00am. At one point, Leah and I just looked at each other and laughed. I mean, there is nothing we can do about it….and we are certainly not complaining. We just said, “today could be an interesting day.” Which it was. Her and I were sooo tired. Classes (for me) were good…but at times really challenging to stay focused. And Leah had various visits from a nurse and even a Medicaid specialist. And Beckett, surprisingly was awake for most of the day again today (somehow)…sooo, very little time for either of us to nap or catch up on our sleep. Hopefully he’ll sleep good tonight…but I guess we’ll see. He gets meds all throughout the night (which isn’t a big deal), it’s just more challenging when you add to that a grumpy baby who is whimpering because he is tired…but refuses to fall asleep. I must say though, it wasn’t anything like when we were home the first time. Beckett would scream bloody-murder all throughout the night then. THIS is much more tolerable. But again, I guess we’ll see what tonight has in store.

Thanks again for all the continual prayer and support. Oh, and if anyone is interested, here is the link to sign up to bring us meals:
http://www.takethemameal.com/meals.php?t=ENMX4112
That feels weird to say (but it’s probably my pride that gets in the way). To not have to think about meals is certainly a blessing, and if you are interested, we are certainly willing to take any frozen meals for later (we got a freezer/fridge combo from someone for free a few months ago…so we do have some extra freezer space). Thank you!!!!

#GoBeckett
#ODAAT