Happy April Fools Day! I really wanted to play some sort of April Fools joke with this update, but I literally could not think of anything that wasn’t terribly inappropriate or out-of-line….so I must refrain.
With that being said, Beckett has had a great day today! No “Joke”! 🙂
I began my day by stopping in this morning to see Beckett before I met up with a good friend for coffee. As I approached his room, one of Beckett’s doctors greeted me at the door and said that I cannot go in at this time because they were putting in another chest tube right then. This is Beckett’s 3rd chest tube to drain his re-accumulating fluid. They were able to remove about 60 mLs of fluid. Beckett responded really well to it. He looks like a brand new baby once again. He pretty much slept nearly all day today and when he was awake we had some good time just looking into each other’s eyes as I just rubbed his head and legs, and held his hands. Leah was at work once again today trying to put in a full 12-hour shift (kudos to her…she’s a strong woman). She is actually on her way back down here right now, but unfortunately as soon as she gets here I will be leaving for home for classes to begin once again this week…my luxurious spring break has officially come to a close.
I had a good moment today discussing some theories and ideas I’ve been having about Beckett’s treatments with the cardiologist. I wanted to affirm that we will go even slower this time weaning him off of his pain meds. Obviously he has now been on pain meds much longer (3 months) than when we were first trying to wean the meds back in January (1 month in). Beckett has built up quite the tolerance to pain meds (unfortunately), and will need to be much more strategically weaned. He agreed and said that they will be sure to make sure they are even slower this time. I also asked about weaning him off of his IV hearts meds. I wanted to know why we are in such a hurry to take him off if they are so helpful. He said that there really is no rush and there really are no ramifications if Beckett stays on on them. So, with intent to give him all the support we can right now (especially while we attempt to wean off of pain meds once again), Beckett will remain on some level of heart meds until we possibly (hopefully) take him home or until his second surgery. I also had to ask about the plural effusion. I was glad they were able to drain it once again, but I wanted to know if they were really investigating WHY it keeps coming back. As a result, sometime next week we will officially be having a “care conference” with the surgeon, cardiologist(s), and his primary doctors and nurses in order to discuss 1)Where we are at 2)Where we are going, and 3)How are we going to get there. I will feel much better about Beckett’s “care” once I understand there is an actual plan. Lastly, I discussed the option of possibly doing a trach for Beckett. Believe me, I’m not excited about the idea…but I had to ask if it’s a “good” idea or at least something worth considering. He wasn’t very keen on that idea as he said that it is typically something that would stay with Beckett for a while, it’s another operation, and it will be very close to where they will be operating once again on Beckett within a few months (for his second surgery). He said it was a very intriguing idea, but after standing there and pondering the idea for a moment, he just wanted comfortable with it. Honestly, that’s all I needed to hear…but I had to ask.
I’m not quite sure why I add all those details to this post (as conversation like that happen often between us and the nurses and doctors), but I just thought I’d give you a glimpse into that side of our days here in the hospital.
As always, thank you for the prayers and support. We are still intently focused on leaving tomorrow’s troubles with tomorrow and living our days one moment at a time. Don’t get me wrong, I’m not “preaching” to not plan, prepare and ignore upcoming events…so I hope you understand what I’m saying. So I will claim it once more, One Day At A Time.
Stay tuned as we hope for even more good news throughout the upcoming days, weeks, and months. We are celebrating today with an old friend of ours I haven’t mentioned yet in our updates (I don’t think) who’s premature baby that was born around the same time as Beckett is going home today! That’s right, no April Fools Joke here! I’m so happy for them and cannot wait for our day to come soon as well!
— with Leah ‘Whiteley’ Rupp at St. Vincent’s Women’s Hospital.
Rejoicing with you that Beckett had a good day today and the opportunity you had to discuss plans with his doctor. Glad that Leah was able to get through her work day and know that Beckett was having a much better day. Praying continually for you all. Go Beckett!
Glad to hear Beckett is doing a bit better today!! Thank You Father!
Continuing to pray and pray for him.