Saturday, March 31, 2012

Not So Good News & Other News


After asking around on my egroup pertinent to my daughter's special need, the surgeon mentioned in my previous post got bad reviews. I'm sure he's a GREAT surgeon, just not for Jie Jie's special need.

However, a surgeon within my HMO, in my state, got great reviews and is personally and professionally connected the doctor at the leading Center of Excellence in another state that I've been trying to get to!!! This is a new lead to follow up on.

Other Not So Great News, I think I've identified another serious anatomical difference in Jie Jie. It's not unexpected, but I thought she'd avoided this one. Ah, the joys of parenting a child with special needs!

I think this is a good time to share some of my recent feelings that are hard to put into words. Last week, while at my local Children's Hospital, and after the past few weeks of intensive visits to various medical specialty clinics, I realized that the great majority of people around me, for the first time, were people who were not healthy. That alone sort of sucked some life right out of me, like when I have a sick cat in the house and realize it's life is coming to an end and the feeling in the house after the cat has died. If the cat has a prolonged illness before death, I have often also become ill, then quickly well once the cat died.

I am very sensitive to what I call Life Force. It's the gift I have for being able to discern health from ill health at obvious levels and intuitive and spiritual ones. My gift works best with cats and children, which makes sense because that is where the majority of my experience is, like Louis Pasteur said, "...in the fields of observation chance favors only the prepared mind." But, I can often walk past an elderly person of even a plant and know if it's healthy or not. So, being surrounded by ill people really triggers a lot of things in me. It's this gift that told me to take Jie Jie off the over-the-counter medication that the Kaiser nurse had put her on. I'd have done it sooner, but Jie Jie also has had a cold this week and I had to make sure that wasn't masking my sense on this.

Anyway, back to what I'm trying to convey but can't really seem to get it out clearly into words...

Walking into the Children's Hospital last week I felt hopeful, nervous, confident, and downright scared on many fronts, too. Would these doctors finally be the right team? Can I advocate effectively for my daughter? Will we catch any illnesses just from being in this environment? Will I gain valuable insight into Jie Jie's care or condition? Will this be a waste of time? If this is our team, am I ready for my daughter's surgery?

Reading a file and choosing a child with a special need wasn't easy for me because there were so many children I could have fallen in love with. It was God who finally gave my daughter to me and I thought, after reading her file and researching her special need, that two surgeries sounded so simple. Now that she's mine and I'm so in love with her, surgery is the hardest thing to have to face. I feel a tremendous weight of responsibility in choosing the right medical team. I know that my HMO cannot provide my child with the best care. One parent even wrote to me and said, essentially, that we don't always have to have the best, that good is often good enough. I can believe this, perhaps for an appendectomy. But not for the specialized nature of my daughter's special need.

Last thought, with the new information I've gained tonight about Jie Jie's anatomy, perhaps her immediate surgical needs may possibly be smaller than I thought. Later on down the road is where they will be more intricate. The only true way to find out is to put her under general anesthesia for extensive examination.

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