It Started With a Cat: Part III

We drove the following week to Detroit with preparations to have my daughter's first surgery with Dr. Trese in which she'd have a heavy substance in her eye and would have to lie on her back as much as possible.  We prepared the car to let her recline as much as possible for the ride home.   There was a chance Dr. Trese would have to put a gas in her eye, which would preclude air travel since gas expands in lower pressure during flight.   We ultimately traveled by car to Detroit only a few times thankfully before we were cleared to fly. 

We were new to eye surgery and didn't know what would happen, but we knew she'd have surgery and then be seen in his office the following day to confirm all was well.  The surgery didn't take long and her recovery from anesthesia was quick.   She wasn't happy about the patch over her uncomfortable eye, but it was okay, she'd be admitted and they'd help us make sure we did everything correctly. 

Or at least that's what we thought.   She had had dramatic eye surgery and had a patch and metal shield over her eye, and was released to us an hour after waking up.   I suppose in retrospect it makes sense, but at the time we were terrified she'd injure up what Dr. Trese had just done.  We took her to a restaurant to eat lunch.  She was fine.   It was strangely normal considering he just might have saved her vision in our minds. 

We were sent home the next day to return in two weeks.  What we had to do now was have my daughter lie on her back as much as possible so she could have the heavier PFO press down on the retina to help it lie back down.   My daughter could still see up very close to a degree so we rigged up an iPad so she could play games with big buttons and watch shows while lying on her back.  At three inches away from her face at least she could still see something. 

Dr. Trese thought he had an idea of what had happened to cause such a disaster in her eyes.  Her eyes were more susceptible to infection because of the malformations and poor vasculature.   When she got the infection in her eyes it damaged the ciliary bodies, which stopped producing fluid.   The pressure in her eyes dropped to zero and the retinas folded inwards, fluid filling in behind them.  

Dr. Trese explained that the eye should feel like a firm grape, which you can test by gently pressing on your eye through your eyelid.   Go on, do it, you'll understand exactly.  My daughter's eyes were like those old grapes that were soft which you throw in the trash.   The eye needs pressure to maintain the internal structure and she had none. 

With this new information, there was no need to continue on the IV steroids as an autoimmune disorder had been eliminated as a culprit.  This reduced my daughter to her normal, thin self.  She was very glad to have no more long injections.  She spent lots of time on her back, learning how to sleep on her back as well, something she absolutely didn't do before.   She was four-and-a-half and she was doing her best and rarely complained for no reason. 

For the next two years, we were frequent visitors to Dr. Trese's office.  Flight, rental car, check into the hotel, don't eat after eight, drink only clear liquids until two hours before arrival time, bring the Paw Patrol toys, get to the OR early, and then after surgery or EUA go get lunch or dinner.  We got so good at this that my daughter knew more about the airports, hotel staff and other things than my husband or I did because she always went and he and I only went every other time. 

Her right eye had some success with the retina laying back down, but it wasn't enough to merit doing the surgery on the left, and by that time with the pressure returned with additional injections of Avastin, her left retina laid mostly back down with one main fold remaining. 

There was something additional that happened in the first surgery that was alarming to us at the time but was just another thing to accept in the long list of things that would never be normal in my daughter's eyes She lost of her natural lens.   Dr. Trese said her lens was so large and nearly spherical that he wasn't sure he could get around it to do the initial surgery.   We needed to understand we might lose her lens.   When he came out after the first surgery while my daughter was recovering, he told us it had popped out and he'd had to remove it.   

Could she have an artificial lens added, just like all the cataracts patients have on a daily basis around the world?   That didn't bother me too much.  He said she was going to need glasses to protect her eyes regardless and he wouldn't want to put an artificial lens in because her eyes were not only too delicate to withstand it, but artificial lenses weren't made small enough for her undersized eyes.

Our life for over two years involved regular trips to Detroit with Dr. Trese taking the lead in my daughter's eye care.  His plan was one all our other doctors deferred to given his expertise.   There were many surgeries, countless EUA's, and office visits.   Dr. Trese was always surrounded by multiple fellows, all learning to become experts in their specialty. 

One time as Dr. Trese came out to talk to us after surgery he mentioned, in what somehow was a complimentary way, that he got all the crazy cases and my daughter was no exception.  He chuckled and said his newest fellow had just seen between my daughter and the case before, enough to need multiple years of fellowship just to understand.   

Dr. Trese was frequently traveling all over the world to give presentations at eye specialty conferences, but he always made time for us.  And we always said yes when he told us when we needed to be there.   If our daughter's vision could be saved, he was the one who could do it.  

In the next chapter, my daughter's eyes develop more complications and do a complete reversal on things we'd been fighting in one direction to become bad in a wholly new way.