An update on Q… we have moved to the middle of testing and procedures and medication tries to give her relief from (what they think is) liver failure induced itching.
Q is sleeping when her body needs it and is awake when her body allows it. She takes medication to be able to sleep but it doesn’t keep her from waking between 3-7am. She waits to take 7am meds then goes back to sleep before 10 and sleeps until her next medication at 2pm. She naps if she needs to during the day. LIke right now.
Our new-to-us hepatologist has a 10-point (at least) plan and we are mostly relieved there’s been progress and we’re patient. Over the last 10 weeks, we’ve ruled out 3 medications and structural issues with the liver via dye contrast MRI. We are heading towards an invasive procedure soon unless this current treatment (UV light) and a new medication dose change work.
Today, Q has a regular kidney clinic. She goes every three months. She was extra sleepy and got up from a deep slumber to sleep in my car and fall asleep in the room, in her red deer onesie, immediately. Her liver doctor came in right as we got there (From where? Because it’s a liver doc near kidney clinic) to check-in. It was a quick chat because he saw us on the schedule. He communicated that he remains dedicated to helping her through a well thought out plan and it’s probably the first time in a couple of years we feel ever so slightly hopeful. He has given us some hope.
So naturally, I cried when he left.
crying is allowed. even encouraged. great tension reliever. i love you.