Our original plan was to check into the hospital for a week while they tested a theory on why Q was itching horribly 24/7. They ran a temporary drain from her biliary system (near the liver) to see if it relieved the itching. We hoped her body would respond to the bile being gone out of her body and it did. Wonderfully.
After 5 months of medication changes were ineffective our doctor (new to treating us as we were passed off to him because Q is a complicated case, and thank goodness we were) had a plan and it included this day and this step.
I am overwhelmed with gratitude for the doctor that Would. Not. Stop. looking for answers and treatments to try when many others gave up. Her itching subsided from 24 hours a day, each and every day to typical itching and scratching relief like you and I enjoy.
After 8 or maybe 10 years, this is miraculous. It’s the kind of miraculous that can be explained but we would have to look back into the childhood of Dr. Romero. We’d have to ask the people around him that supported him to become a doctor and then to the people who fostered caring and compassion and a certain stick-to-itiveness – either learned or part of his DNA – so that he could eventually be here this day to ease the suffering of our daughter. I will blog about soon it but know we are grateful beyond measure for today and some viable answers and treatment options in the coming weeks.
We had planned to go home after the test with a nasal drain while the powers worked out a time when he could do the surgery. I think because the change was so remarkable and the surgery fairies were looking out for Q, the surgeon had a cancelation and so a week after we were admitted, and within two days of the decision to proceed with the stoma with a bile-ostomy bag attached to her tummy, the surgery happened.
Q and I were talking about all of what she has endured so I made the video of a Medical Life.
Here is a wonderful picture of our hero, Dr. Romero, The Doctor Who Didn’t Give Up and Q. He carefully answered her questions about pain management and recovery. I treasure this photo and memory of this moment. I asked if I could post a picture of him and he acted like “not sure why would you want to but okay.”
