April 8

So Connor didn't sleep much again last night. His night nurse said he really didn't fall asleep until about 5am. He's like an infant who's switched day and night!!
His lab work is looking much better on paper. His creatinine is in a normal range so if it continues tonight and tomorrow they'll try and do the CT tomorrow. 
His Lipase (pancreas) is 962, so way down from yesterday's 4,000+.
His blood glucose is still over 100, which is normal, but under 200. So we are still correcting with insulin.
They are still giving him a ton of fluids, and he's still essentially hoarding them. They are continuing to give him the meds to help him excrete it better. He still feels gassy and bloated.  Unfortunately the meds used to excrete the fluid can work the kidneys and may increase his creatinine, but better in the long run. It's a balancing game for sure!
PT came in today and his goal was to sit in a chair upright for an hour. So we went from bed, to commode, to chair, back to commode, and to bed. He made it to 40 minutes. It took him another 20 to get his breathing back under control afterwards (with the high-flow oxygen turned up). The difference in 5 days from my mostly normal teenager on Saturday, to today is horrifying, but knowing he is on the mend is good news!
PT will come by 4-5 times a week and continue to work with him so that when he goes home he can manage the stairs, shower etc.
The Valerie Center continues to be amazing. They found me a quiet room so that I didn't have to leave the hospital to attend my counseling session, they gave me some Starbucks gift cards for my 2pm coffee pick me up, and sent massage therapy over to give me a neck and shoulder massage. Feels like it was all about me today, but you'll all be glad to know I'm managing the self-care!!
I'm trying to balance letting Connor rest, and keeping him a bit more awake today to aid in overnight sleep. It feels so cruel to keep him from sleeping! 
He's still tired, having trouble breathing, and in a fair amount of pain. So while he looks so much better on paper, the rest is going to take quite a bit more time.

Comments

  1. Sue CraneApril 8, 2021 at 1:22 PM

    continued prayers. If you all need anything, or need anything for Kaylea, let me know.

    ReplyDelete
  2. Nana PenApril 8, 2021 at 1:29 PM

    So heartened to hear that numbers are improving. Such a quick turnaround from normal to very ill! Praying he will be back home before too long, being a more normal 17yr old!
    How fabulous that you are being looked after too! What a wonderful place Erin!
    Love to all of you❤

    ReplyDelete
  3. Todd McDermidApril 8, 2021 at 2:20 PM

    Looking forward to the day we can get him up here for an extended period and get him on my PT plan ;) Make him anything but a normal teenager!

    ReplyDelete
  4. Dan and GailApril 8, 2021 at 5:10 PM

    Hoping for continued progress for Connor and so happy to hear that you are being pampered a little yourself Erin, you deserve it. This is really tough to do, watching your son weather this journey, feeling so proud of his resilience, other times feeling so scared for him. You are doing an amazing job, we are so impressed with your ability to cope, to comprehend all this very technical information and to be there to support your boy! Sending hugs from afar along with our continued prayers. G&D

    ReplyDelete
  5. KinlinFamilyApril 8, 2021 at 5:45 PM

    A very scary situation, but I am glad things are improving on paper at least ... and the physical will follow suit. That’s wonderful that the Valerie Centre is offering you a little TLC as well ... take care of yourself, to take care of others! 🍀🤞🙏💕 K/C/M/L

    ReplyDelete
  6. BeataApril 8, 2021 at 11:01 PM

    I'm so glad to know you are both in good hands there, healing and helping hands for sure. Praying that the numbers keep improving and that Connor feels stronger by the minute. Much love 💕🙏💪

    ReplyDelete

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