Keep trying to find a way forward

Today we had an appointment with Addysons doctor to go over yesterday’s test results.

She is holding onto the potassium and dumping the sodium. She is even on florinef to help her retain the sodium so we are not sure why she’s dumping it. It’s frustrating that this is still happening when she’s on meds to stop it. They also are very concerned about her potassium level and her total body sodium along with her urine specific gravity number.

There is thickening of her jejunum so they are trying to figure out why. Her gi is thinking chrons/colitis but we shall see. He said he was not expecting to see this on her ultrasound.

We talked about her weight and where they want that to be. That’s a whole conversation in its self but we have some major work to do there and only two weeks before the next appointment.

We also discussed that due to her ostomy and her pots that If she vomits then she is to go to the er immediately for fluids. Her g tube does not help when she’s vomiting. They said we can’t wait and try to manage at home due to her current levels.

I’m just very overwhelmed tonight. There are just not enough hours in the day. she has tutoring after school and then has her extra school assignments and all her medical stuff and now the new things that need to happen due to today’s call. It’s just a lot to do in a short time and then to still have some family time that’s not all medical or school related. Just feeling all the feelings tonight.

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