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River update
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(Note: I wrote about this in a locked entry last night, so if you didn't read about River's eyes, you should go read the earlier entry. We're blogging about it openly now.)

So, a quick update. The Santa Clara doc called this morning to let us know that, while he capable of performing the surgery, Kaiser did not own the equipment needed to do it. He, with the help of the ped. opthamalogist that we talked to up here, managed to get us referred "out of network", which turns out to be the very best thing that could have happened under the circumstances. Because we were referred to the Glaucoma Center in San Francisco, which has *two* specialists in congenital infant glacoma. San Francisco is also much closer than Santa Clara, which was good since we were told, after several phone calls, "Come now, the doc. is leaving at noon." (this is at 10:50). We were there by 11:30, and that included us throwing on clothes (skipping our showers) and getting the baby ready to go.

It was very sad, the tiny baby in the waiting room full of the elderly. The look of shock on the woman's face next to me when she realized that our adorable baby was the patient. The way the staff referred to him as "the baby", as in, "the baby is here now".

Not much of an exam today, though. It took the doctor some time to talk me down when they told me that they'd put him under/ do the surgery if needed (which it probably will be) next Wednesday. The other docs had told me today or tomorrow, today or tomorrow to save his eyesight! But, she finally convinced me that this was because they weren't familiar with this, that this is a rare condition that this is likely their first experience with and it's easy for them to freak out and say that. "We're not going to wait months or even weeks, but the eyedrops will help with the pressure until we can get him scheduled on Weds. This isn't something we can do on the fly; we need a whole surgical staff, two surgeons" etc. And yet, they still seemed to take it more seriously -- the pre-surgery regs are more rigorous (he can't eat or drink anything for 6 hours ahead of time! Poor baby!), they're going to have a bigger surgical staff, etc.

I'm told that people come from around the *world* to see the surgeon (Dr. Iwatch, pronounced "Dr. Ewok", I swear) that is assisting the office doctor we saw today (Dr. Krishna) on the operation. Reading other parent's accounts of traveling 6 hours to Boston for every surgery and checkup, I am so very very grateful that we live across the Bay from this center. I feel we are in good hands. I am glad Kaiser referred us out of network with (so far) very little fuss.

Dr. Krishna told us we caught it very very early. She said most cases are 7 year olds who are going blind after years of being treated with just eyedrops for conjunctivitis. We won't know until after the surgery, until he can talk and tell us what he sees, how bad his case is. Each case is very different. But we caught it early.

I talked to my pediatrician today, who told me she was amazed at the diagnosis, that she had never seen a case, and neither had the much older ped. she had look at him yesterday. She said, "You know, we always refer them and most of time it's nothing and I feel kinda stupid, but this is why we keep doing it anyway." I thanked her profusely for noticing and referring us. I could tell that she was pleased that she had helped. I could also tell that we are now the talk of the Mosswood pediatric building at Kaiser Oakland. We are famous. We are the parents of the baby with glaucoma.

The surgery is scheduled for Weds. morning. Tim can't come; I have to be there with the baby at the time the movers will be at our house. I will leave early Wednesday morning with my baby, have the most harrowing day of my life, and return to an entirely different house. Thank gods Susan can get off to come with me so I don't have to go through this alone.

He will have bandages for the night, then we see the doc. again the next day where they'll come off. We will see the doc many times in the next few months, as they'll have to put him under many times to check the pressure in his eyes to make sure the surgeries took. He will likely have another surgery soon. We might have to have other, more difficult, surgeries if these don't work well.

This is scattered. I am scattered. I am supposed to be packing. I am so tired. I am so sad. I am trying to get over my fear of anesthesia, because it's not happening until next week and it'll be happening to my baby a lot.

My poor, poor baby boy. Wish us well; it helps to know you guys are out there, thinking of us. Thank you.

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