Nov 1st

Connor took his last Prednisone dose on Friday night. Yesterday we had instructions to stop the fact acting insulin with every meal, and reduce the long acting one by 50%. Connor has never been more happy than to just have a bowl of cereal and milk, with it's 150 grams of carbs!!  He had some Halloween candy during the day and while his blood sugar went up, not once was it considered "high". Kirk tested him at midnight and he was low, really low at 67... And of course he couldn't find juice. Kirk gave him milk and tested him again and it was back to normal. We see the endocrinologist tomorrow, but I think we stop the insulin all together tonight!

Consolidation phase is next. It starts Monday Nov.9th. So except for the Monday appt at the Endocrinologist, we have nothing else this week.
Consolidation is two 4 week sections, and there may be a gap of a week or two between them, but that depends on his numbers. 
We will be at the Valerie Center Mon through Thursday for the next 4 weeks. Monday will be a long day as they need him very hydrated, and want him on IV fluids all day. They are reaching out to insurance in the hopes of home care, so he can go home with the IV and continue it overnight. Otherwise they'll admit him overnight to maintain the fluids. We are doing everything possible to avoid this! Tuesday, Wed and Thursday "should" be shorter days... But won't really know until we get there. 
Kirk is making new port shirts for Connor. Sewing zippers into the shoulder so they can access his port without getting undressed or having tubes coming from under his shirt every time. 

So lots coming up, but hopefully everything will keep going fairly smoothly. It's a lot, but we are managing and so thankful to everyone reaching out!

Comments

  1. KinlinFamilyNovember 1, 2020 at 1:48 PM

    I hear you Connor ... nothing is as good as cereal and milk! Fingers crossed for home care and well done Kirk ... zippered shoulders! You should patent that! You are all so positive and upbeat ... a smooth transition to Phase 2 is in your future. All the best 💕Lots of Love, K/C/M/L

    ReplyDelete
  2. Nana PenNovember 1, 2020 at 3:47 PM

    Thanks for the update. Glad Connor will have a break before the next phase of treatment. Sounds like a lot of fluid will pumped into him! Thank you, Kirk, for your inventive sewing skills! For now, here's to cereal for breakfast and no more prednisone! Sending love to all💓

    ReplyDelete

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