June 15

Connor didn't sleep great last night. He's still trying to keep drinking, it's still visibly painful. He said he's less nauseous though. He does keep trying to get the mucus out, today he wasn't very successful with that.
The constant fluids did seem to impare his breathing today. He d-sated several times and they upped his oxygen from 3L to 10L and put a mask back on. He did manage to go back to a cannula a couple hours later. They gave him lasix to help him get rid of the fluids. It seemed to work, at least short term.
He got two units of platelets again.
His WBC count is still very low, as well as his ANC. He really needs time to have these come back, nothing will heal until they do.
They put in the midline IV again, and then he proceeded to blow out one of the other IV's. I guess he was tired of being a pin cushion. 
His sugars are still up, they are giving him insulin every four hours to correct, and adding back the overnight Lantis as well. They did adjust the TPN, but apparently they can't take out anymore dextrose. His electrolytes are better, them seem to have adjusted the TPN better for that.
Kirk took over visiting this afternoon, but I stayed until he got there. I never even saw him yesterday!
It was a frustrating day for me. My poor son was awake, and asking for me at 6am.(I had just woken up). By the time I got there at 7:30, he was falling asleep. He proceeded to have 5 nurses rush in as he d-sated, two more came to do the midline, his heart started beating irregularly, they rushed in an EKG. 6 Drs met outside his room to discuss their plans, and then they all walked away. Not one of them came in to update, or reassure me. It was hours before they did, and only because I told a nurse how pissed off I was.
I know that he is getting excellent care, but his lack of progress is so disheartening. He needs rest and time to recover, but I feel like every new thing brings new complications.  The constant beeping, poking, proding etc. are exhausting. He doesn't have much left.

Comments

  1. Nana PenJune 15, 2021 at 6:43 PM

    Oh Erin, our poor boy! The frustration level for all of you is way too high. So awful! We just keep praying.🙏❤

    ReplyDelete
  2. KinlinFamilyJune 16, 2021 at 12:41 PM

    Oh Erin, My heart is breaking for you all. I cannot imagine your frustration or exhaustion. Hold on to the fact that Connor is getting excellent care - I was once told “as long as the doctor can heal me, I can deal with the poor bedside manner” … doesn’t make it less frustrating, but, perhaps, helps to keep your eye on the prize! The tides will turn - stay strong. Lots of love. 💕K/C/M/L

    ReplyDelete
  3. BeataJune 17, 2021 at 2:07 PM

    Oh my goodness, Connor has been through SOOO much. Much as they need to be communicating at every turn, he is in such amazing hands both with the doctors and with you. Wishing you and him lots of strength and a break from this string of complications. Love and hugs 🙏❤🙏💕🙏

    ReplyDelete

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