Yesterday marked the start of a lot of changes for me. We are slowly trying to bring down my intravenous sugar intakes today. I'm down to 5 ml per hour from 6ml. Sounds like a small step forward but for me it's a huge leap.
We have switched my medication and are now including it in with feedings. The hope is that I will be able to eat it without throwing up! So far we have been successful. 24 hours puke free!
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| Yum Yum can't you see my bright yellow med/food concoction in my tube! |
My nurse today is Debbie. Debbie reminds us of Enseign Ro Laren from Star Trek. She has been taking great care of me and is working on making my bum feel better as it has become very sore from all the diapers and toxic poop I create.
The big news today was that the metabolics assistant doctor came by and mentioned that they were making plans for managing my feeding at a home care sort of level. This means that if they can manage to get my IV down to nil and take it out, and my sugar levels stay constant, I MIGHT GET TO GO HOME ! ! ! ! !
My mom and dad aren't counting their chicken just yet but we're all excited. The next plan is to try and send me for an MRI this week. Booyeah, brain scan!
My little buddy Emerson had a good night seizure free last night. We're all really excited for him and his parents!
Well it looks like I have visitors, my friends Sean & Heather are here to see me.
Signing out for now!
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