It's taken me a week to sit down and write this, not that I haven't had time, but rather it's taken that long to sort out my feelings about the situation. Last Monday Anellah had three appointments in San Francisco at UCSF. My AMAZING friend, Nicole, offered to watch Capper so that just the two of us could go. I didn't even ask her to! I was dreading two things 1). Anellah having to put up with waiting rooms, doctors examinations, listening to Mommy and the doctors talk, and blood draws 2). What new information I might learn. Two of the three appointments went well and didn't include any real surprises. One appointment, however, left me frustrated and confused.
She was referred to the UCSF Hepatology (liver) Department from Children's Hospital Oakland where she had been being seen for her liver problems. Part of her genetic syndrome includes Hepatic Fibrosis (injury to the liver). Children's said they wanted continuity of care between those managing her liver and her endocrinologist. I hoped this didn't mean they were suspicious her condition was anything other than stable. I'm not sure what the rationale really was but the new Hepatologist, after reviewing her information, told me "sit down, we have a lot of talking to do" and proceeded to explain that he feels her liver condition is progressive. He feels she will either need a liver transplant or major surgery in the future, it's just a question of when. He had us schedule an ultrasound and liver biopsy to be completed within the next month and gave explicit instructions about her care (watch for bleeding, protect her from trauma to the abdomen, etc.)
Of course this is just another thing in the series of medical treatments and procedures Anellah will be experiencing for her entire life. But it resurrected a lot of the questions that I struggle with (some of them selfish questions) as I love this little girl. Questions such as:
- When will the new diagnoses end?
- How often will she be hospitalized? (So far it's been a few times a year)
- What will her health look like by the time she is an adult?
- What can we do now to give her the brightest possible future?
- Will she ever be able to live a "normal" adult life?
- Will she ever be privileged to experience parenthood?
- How will this affect our family?
- How much will we spend on medical appointments, missed work, transportation, parking...?