Heart of Beckett

UPDATE (4/8/13)

Much…..much better day today. In fact, Beckett was so calm and relaxed that most likely he will get weaned again tomorrow from his fentanyl. Not much of a reward for his good behavior, huh? But as we keep saying, these pain meds were a necessary evil, and we were warned of these trials from the beginning.

Our day began on a humbling note with another baby right next to Beckett’s room passing away this morning. It is always such a humbling reminder of how precious and fragile life is.

We were then informed that Beckett’s direct bili has increased again! Yikes! That’s not what we want to hear. Sooo, after our humbling reminder this morning with the neighboring baby, and this news, I was surprisingly slightly on edge until the infectious disease doctor told us that Beckett’s CRP level has actually decreased and as of right now he isn’t overly concerned about the bili level….but that they are definitely gonna be watching it.

We were also informed that they may remove Beckett’s chest tube sometime tomorrow. They just aren’t seeing any reaccumulating chest fluid, and they really should take it out before any infection may try to creep in.

Tonight and tomorrow will be a little unique for Leah and I. For the first time ever we both are staying in Upland for the night. However, a few months ago, Leah committed to not going home (to our house) until Beckett is with her. Sooo, she will be staying at her parents’ house. So as she works again tomorrow, I have class once again. I will then be staying at our house tonight in Upland as well. This then means, for a large portion of the day tomorrow (4/9/13), Beckett will be “by himself”. Now, we need to remind ourselves that that isn’t necessarily true. In fact, his primary nurses are working throughout the next few days. So that alone does help provide us with great comfort (thanks ladies!). But there will be a rush for me to get back to Beckett as soon as I can tomorrow after my obligations.

This now leads to Wednesday. We were informed earlier today that our care conference is scheduled for Wednesday at 3:00pm. We have been forewarned that there isn’t a guarantee that all the physicians and nurses we want present will necessarily be able to. As in, an emergency could arise (or any other more important issue may arise), that could thwart their participation and attendance. So pray for a good turn out, productive conversation, and creative/wise solutions to help streamline and effectively support Beckett’s complete recovery.

Thank you everyone! So encouraged from each of your support. It truly is amazing!

#ODAAT
#GoBeckett!

— with Leah ‘Whiteley’ Rupp