It’s been four weeks since my daughter has had an Evaluation Under Anesthesia (EUA) to see the status of her eyes. The whole family went today on account of school being out and both of the adults wanting to know the latest. I’ll cut to the interesting part and lay out what her lead doctor said after she was in recovery.
Her eye pressure is undetectably low. It’s somewhere between zero and one, which is what their OR machine can register. A pressure of five would be good. Her pressure would be like pushing on her eye and feeling it not respond or bounce back. He described it as, “squishy like a grape”.
The abnormal blood vessels in the eye are still inactivated and have not reoccurred. Her retinal detachments overall look unchanged from last time (one month ago) to this time but they do not look worse. They have improved from the initial EUA in September, however. Initially the retinas looked stiff and bellowed outwards. The stiffness has resolved and not there are folds and wrinkles in the retinas. There could be interaction with the vitreous and the fluid buildup behind the retinas.
There is a thickening of the choroid, the later behind the retina, which is due in part to the inflammation. They were able to get a better view of the choroid this time. They are seeing signs of inflammation in the optic nerve. They did an ultrasound and didn’t see anything unexpected.
The dye test showed good blood flow throughout the retina. They didn’t see a lot of leaking in the blood vessels, which was something they initially saw with the reduced blood flow to the eyes.
One component of her poor vision is due to the low pressure. They gave her another injection of Kenalog steroids directly into the eyes today and hope this will help with healing. A side effect is sometimes these injections lead to high pressure. There is no medication that will increase inter-ocular pressure.
One big thing that’s in play with in her eyes is the low pressure. It’s like dealing with a leaky balloon. There are fluid producing cells and drainage systems. The fluid-production isn’t keeping up with the drainage. It’s putting her eyes in sort of a shut-down mode. Continuing to control the inflammation and increasing the pressure should help the overall situation. Unfortunately, there is no good way to stimulate the eye to make more fluid.
The structure of the eye and the function of the eye are related. From a functional point she doesn’t see well. She may have gaps in her vision that allow her to see better at some times and in some situations. The real issue with this is the long-term effect of all of this. A lot of the changes in her eyes have been in place for several months. Once the healing has taken place, the brain and the eyes will have to come together again and remap what she sees with what her brain interprets. This may take some time. Fortunately, she is young and her eyes and brain are still developing with relation to vision.
So it doesn’t sound particularly positive as of today. But she is just getting to full dosage on the immunosuppressant medication and the hope is that the situation has stopped worsening and will now begin to get better. We will have another EUA in a month to find out more.
The Big Boy Update: My son is now one of two four-year-olds in our household as his sister turned four today. He was a very kind brother during all of the hospital events of the day as we took him with us to her EUA.
The Tiny Girl Chronicles: EUA on her birthday? Alas, we go with the surgeon’s schedule and that’s what was available. We made up for it with fun, family and food tonight.
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