A Tasty Place to Visit
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2008-02-29 5:30 AM
Never been so worried
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(This was a locked entry, which I have now opened up. It is out of date; there is updated info in the next entry.)
I took River to a Dr. appt. yesterday for a red eye. We figured he'd scratched it, but it's still two weeks until his 4-month checkup and better safe than sorry.
Well, his pediatrician (thank gods they got us an appt. with his regular doc!) wasn't worried about his red eye so much as the fact that she couldn't get the back of his eyes to reflect and that his eyes were cloudier than the last time she saw him. I mentioned then that the past couple of weeks of photos of him I've had to do fewer red eye corrections. I pulled out some wallet photos of him at 10 weeks, and she pointed out how much clearer his pupils were. She had another ped. look at him, but also got me an appt. an hour later with an opthamologist.
I tried very hard not to cry in front of the baby.
The eye doctor took one look in his eyes (just using a light, not even a scope of any sort) and told me he wanted me to see the ped. opthamologist. He helped me gather my things (the baby was out of the stroller, so I carried him and the doc. pushed the stroller until we hit the waiting room where my friend David, who had come by to help me pack and went along to help lug baby stuff, was sitting), downstairs to the ped. eye doc. He looked in his eyes, numbed them, looked again, dilated them, looked again. Each procedure upset poor little River, but until the last I managed to calm him down between. That last look, in a dark room with me and the nurse holding River as still as possible while he shrieked his saddest, high-pitched shriek, was just awful awful awful.
At some point in there, but before that last look, he told me that he thought it was infant congenital glaucoma. I called Tim, crying pretty openly at this point, to tell him. I felt bad for wigging him out, but then it's something very reasonable to wig about. He came over, though by the time he got there we were done with the awful, fruitless tests (the doc couldn't see the backs of his eyes, because he was moving but mostly because they are so cloudy), at least he could ask the doc. questions.
Those big, beautiful eyes of his? They're so big probably because of the glaucoma. The pressure is stretching his little eyes, because he's still growing.
We are going down to Santa Clara today (Friday) to see Kaiser's N. CA pediatric eye surgeon person dude doctor man specialist. What is likely to happen, though we don't know for sure, is that he'll put River under (oh god) to do better glaucoma tests, and, if it is glaucoma, will operate right then. We're giving him eye drops in the meantime, and probably afterwards, and for the rest of his life. It doesn't go away. It's managed through surgery and medicine. Sometimes multiple surgeries.
The good news is that we caught it early, possibly ridiculously early. Infant glaucoma is usually diagnosed at 6 months, and he's not yet 4. Looking at his pictures, now that I know what I'm looking for (cloudy eyes, indistinct pupil), it looks to have started about two weeks ago, though his eyes have been big since about 2 months on. Another symptom, fussiness (we thought he was teething), has been going on for about a week. The earlier it's treated, the better the chance that he won't lose as much of his vision (oh god oh god); any vision he loses is permanent -- the pressure of the extra fluids puts pressure on the optic nerve and does irreversible damage.
But oh god. Oh god. They're going to put my tiny little baby under. Right now, that scares me more than anything else. It's such a risk, and it terrifies me. And then they're going to operate on his teeny little eyes. The doc today couldn't answer most of our questions, didn't help much. Google only helps so much. I don't even know if he's going to have to stay the night down there, should I bring a toothbrush? Will he have bandages over his eyes, how the hell am I going to keep him from rubbing at his eyes (which he does), from scratching them?
The least of our worries right now is the fact that we're moving next Weds. Well, the movers are coming then. It might be, at this point, that they move what we have boxed up and the furniture, and we worry about the rest later (we have this place until the 15th). It is far more important to take care of River right away, but I'm not sleeping and a part of me wonders how the hell I'm going to get through the drive tomorrow, let alone packing and moving into a new apartment in 5 days.
I know of a few of you have had kids with medical stuff. How did you get through it? Does it ever get less scary? Because I have never been so terrified, never knew it could hurt like this. My poor little baby boy! Oh god, my poor little guy!
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