October 15, 2019
Olly is doing alright today, blood sugars are regulating on continuous tube feeds. Took her off them at 9am for another glucose challenge and she hasn’t dipped below 50 (normally in the 90s, she keeps dipping to 60s and then back again to 70s). Need her below 50 so we can draw blood again and double check that this is what we think it is before doing any sort of treatments.
It’s sort of good that her sugars aren’t below 50 because it means her body is naturally doing its job regulating. Leaning more towards the theory that her storages were simply depleted and need to be built back up. Had to stop the challenge at 12:45 for her swallow study.
Swallow study went mostly as expected. She can no longer safely have anything but purees and some solid foods in the upright position and is limited on quainity. She can have water and PediaSure in what is called a side lay position again with limited quantities.
She had a little bit of a rough night vomiting this evening. Likely a reaction to the barium being the only thing in her tummy and just had trouble getting comfortable. She is sleeping now which means Dad should be too.
Many conversations tomorrow about next steps - gtube, medications for insulin regulation, emergency plans for home, parent education classes on measuring blood sugars at home, parent education classes on gtubes, etc.
Lora went home and picked Mara up and take her to dance. Nana and Papa took Mara home to our house after dance and got her dinner and to bed for the night, sticking with the normal Tuesday night routine (well minus Olly). Lora stayed and taught her dance classes tonight. This was good for everyone involved. Nate has overnight duty tonight and tomorrow hoping we can all get some sleep after a busy day today and another busy one coming tomorrow.
Again, thank you for everything you have done to this point. We can tell you how much it means.