Beckett has had what the nurse has reinforced to me “a good day”. I think it was just one of those days for me because every little thing “wrong” was bothering me. It wasn’t that horrible things were even happening, but forsome reason I had to keep asking any nurse or doctor today if everything was really ok.
My day began with the nurses telling me how good Beckett is looking and that he is doing great (which he was, and is). However, within a few minutes I was politely pulled aside into a conference room by one of Beckett’s doctors to talk with me about a few things. She began by saying, “Beckett is doing well, but…”….that’s never something you want to hear. She (the doctor) proceeded to tell me that Beckett’s gall bladder wall is thick and his direct bilirubin is back up again. He also has some build up of sludge in his bioducts. She said that GI has been called over from the PICU to check it out. Additionally, Beckett’s kidneys are enlarged. There are more details that I will leave out, but all-n-all, the GI doctor said that they think it’s going to be treatable via medication. That’s good news because there was a chance that they were thinking of needing to send Beckett back over to the PICU to do a study and if unfavorable results emerged, surgery was the next option. Soooo, please keep praying that surgery is not the case and the meds they’ve already put him on will be more than sufficient for this “problem”.
Beckett’s fentanyl was decreased today. He’s handling it weeeeellllll (that’s my version of a cautious “well”). He really comes off any pain meds these days with much difficulty. They had to intervene a few times today by way of administering his scheduled methadone early, and then eventually a rescue dose of morphine. To be quite honest, it kinda freaks me out AND breaks my heart all at the same time. When he was withdrawing hard earlier today before the additional pain meds he just inconsolably cries and it looks like he’s going through so much pain. And when he’s not crying, he’s doing things like crossing his eyes, or doing other funky things with his eyes, or just staring straight at the ceiling. He just gets so snowed that it’s hard to even see his personality through the gaze. We had been warned months ago that his withdrawals will be challenging for both he and us…..and they weren’t kidding. The proper perspective here, however, is that his heart is pumping well and his lungs are looking better. In fact, I’ll conclude on this note…they did another X-Ray this morning and it actually stated that his plural effusion is gone (once again). It’s hard not to roll your eyes at the news, but I have to fight that urge as that certainly doesn’t display gratitude nor thankfulness. It’s just hard not to think, “yeah, it’s gone…..for now”.
So…please pray for our attitude (well, I should speak for myself, my attitude), continued healing (particularly for his gall bladder and kidneys now), along with a smooth(er) wean from his pain meds and even continual acceptance of the reintroduced “feedings”.