The Eye: Where We've Been

I want to share more about what’s been going on with G’s retinal detachment. I’m going to aim for a 3-part series, starting with a look back.

Last month, G’s retina detached and he went through scleral buckle surgery. After that, a patient must stay calm and still so that the eye will heal.

I’ve shared some funny tidbits about trying to keep G still… but it hasn’t been funny.

The longer he’s been reined in, the more overloaded he’s become.

Do you remember the behaviors we used to experience… the ones that led to him being “invited” to leave his day care… those behaviors are back… and worse. He’s older, stronger, and wiser. Now he REALLY knows how to rage.

The thing is, it’s not a temper tantrum. It’s not a choice he’s making. He can’t be reasoned out of it.

He gets to a place where he can no longer employ logic. I watch him click into his own kind of “fight or flight” mode, and he’s off.

Not helpful when the mandate is “calm and still.”

Three weeks post-surgery, G’s retina is still detached.

G’s doctor explained our next steps. More surgery. Remove the gel from his eye (victrectomy) and insert a gas bubble (pneumatic retinopexy) under general anesthesia. The gas bubble stays in the eye and pushes the retina back into position so that it can heal (reattach to the back of the eye).

It can be a highly successful surgery…

     If the patient stays calm and still…

          For 16-21 hours per day…

               For 1-3 weeks…

                    WHILE “POSITIONED” FACING THE FLOOR

Because – you know – I was so successful at keeping him calm and still that someone thought we needed a bigger challenge.

I am not feeling at all good about our likelihood of success.

I’d say that I’m 99.5% sure we cannot possibly achieve this goal.

I explained this to G’s doctor, who simply said “I’m not willing to give up on his eye yet.”

Translation: “You try this surgery/recovery OR you accept blindness.”

Yesterday we met with G’s fabulous pediatrician to discuss options for sedation. Today we’ll begin a trial with different doses of Benadryl, hoping G is sedated & not stimulated by it. The pediatrician is going to research other possible options for us.

Finally. You are caught up on Where We’ve Been. I have the next parts of this series written out – but only in my head. Hopefully I’ll have a chance soon to type it out.

Thanks for caring!