April 10

Thank you to everyone reaching out. The beginning of the day is quite busy, I've been trying to get this update out for about an hour. The doctors come in and out, and lots of specialists are weighing in as they make their plan for the day. I'm trying to concentrate on the questions I want answered. 
Connor still had very disruptive sleep, I think when he gets home, he'll sleep for two straight days!
When I got here this morning he was asking for water or ice chips, even with all the excess fluids not taking anything by mouth is hard for him.
They took off his BiPap (vent) in order to do oral care and give him some ice chips. He D-sat'd in under a minute. (Oxygen levels desaturated quickly). We had to keep putting mask on so he could breathe.
The actual flow of the machine isn't very strong though, so they decided to move him back down to the hi flow machine (cannula, or nose piece, instead of mask).
He says he has to concentrate on breathing now, but his blood pressure isn't going up with the effort anymore, and his resps are better. (Less shallow, but still not really deep).
This machine allows him to have some ice chips and water. They don't really want him having too much fluid orally, but he can have some for the comfort. They'll monitor how he does on this machine today.
He has been on his phone today, between cat naps, so that's the most attention he's been able to pay to anything since Monday. It's a very positive sign.
His fluids are still overall too high. In order to clear out the pancreatitis and sepsis they want to push fluids through him, but he's still not getting rid of them as he should. Since Tues he has a net excess of 6litres accumulated. (He was negative 2.8 litres yesterday, so he got rid of what he was given, plus an additional 2.8, so that helped. But still has that additional 6 to get rid of). They continue to give him the diuretic to help him. He is feeling less bloated, but still not feeling normal.
His pain is almost gone, he hasn't had dilotid for 24 hours now. He had some tylenol last night for discomfort, but that was it. This too is great news!
On paper his numbers are still looking very good. Kidney function looks almost back to normal as are the pancreas numbers. 
From the Leukemia stand point his hemoglobin and platelets are dropping, it's possible they'll do a transfusion of one or both in the next couple of days. The transfusions do increase overall fluids as well so they are balancing how long they can hold off as they try and get fluids out.
They continue to monitor his blood glucose, because they put back the dextrose in his fluids. He's having both the long acting Lantis and Humalog for immediate correction.
PT came in today and had him sit up without support and stand for about a minute. He did well, but legs were definitely shakey of course. 
Big difference from yesterday to today, but definitely slow progress. Lots of "let's wait and see what happens with this now."


Comments

  1. Nana PenApril 10, 2021 at 1:29 PM

    Focusing on the positive! On his phone and standing up, even for a minute! Also numbers looking good. Hard to believe his body is holding SO much fluid.
    Erin, you are amazing to be able to impart so much information to us. I would have had to record the information to pass it on. Thank you for giving us the news!! As always, every minute, we are thinking of Connor and all of you - praying and sending our love. May Connor get rid of that fluid, and enough improvement that he can get home🙏👍❤

    ReplyDelete
  2. KinlinFamilyApril 11, 2021 at 8:48 AM

    Wow! Lots of info - thank you. Very happy to learn everything is moving in the positive direction ... even if it is slowly. Wishing Connor that 2 day sleep in his own bed! 🤞 Hope he has a great, long pee and a wonderful sleep this evening.😄 💕 K/C/M/L

    ReplyDelete
  3. BeataApril 11, 2021 at 2:20 PM

    Thank the Lord that his pain is improving a lot. I can't wait for him to get better enough so he can sleep and feel the warmth of home. Glad to hear he is moving in the right direction for that.

    ReplyDelete

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