That’s right.  Don’t count your chickens before they hatch.  Sometimes, even after you think they’ve hatched you better not count too soon…

Wayne officially has glaucoma.  Our greatest fears have been realized.  It was over 3 weeks ago we first suspected “cloudy eyes.”  We both swore that they looked a little cloudy and that he was really light-sensitive.  We took him to his primary for a second opinion.  “They do seem slightly cloudy, but I can’t tell.  You should take him to your glaucoma specialist to make sure.”  We did.  Dr Greenidge took a look and said “Nope.  They look fine, but I’ll see you back in a week and dilate just to make sure.”  One week later we took him back to dilate.  Dr. Greenidge said, then, that they do look cloudy and he would like to do an EUA just to make sure.  Yesterday, we went to the hospital and did an EUA.  It seems like it has been a month from Sunday night til right now, even though it has only been 36 hours or so.  Here is what happened…

5:00pm Sunday night… We decide to stay in St Petersburg so that we can get an extra hour’s sleep.  We take my mother to help out and we left Christopher and Kevin with Grandma.  From my father in law’s house in St. Pete to All Children’s it only takes about 15 minutes to get there.  From where we live in Plant City it takes an hour’s drive.  At five in the morning it seems to take a lot longer … so it is just easier to stay there.  So, we did.

6:00pm.Sunday… We arrive.  We unpack.  We chat and try to keep our mind off of the impending EUA.

10:00pm.Sunday… My wife retires to the bedroom to sleep and takes Wayne with her.  My mother follows suit and goes to bed too.  She has a sleeping pill to help her… lucky her.  I lay on the couch watching t.v. trying to not think about the possibility of Wayne having glaucoma too.  I mean… what are the odds?  It is extremely rare for anyone to have congenital glaucoma to begin with… but to have two children with it … seems a certain impossibility.  (*This is where I realize that I am still thinking about it and I just give in.)  I laid there thinking about it until 1am and finally drift off to sleep.

5:00am.Monday… We wake and each get ready in our own way.  Very few words are spoken as we are all in deep, quiet, thought.

6:00am.Monday.  We arrive at the hospital and sign in.  We are all fine up to this point.  At least we’ll know for sure whether he has it or not in a couple of hours.

7:00am.Monday.  They finally call for Wayne to go back to start his physical, check-up, and dilation drops.  This is where it starts to hit me.  Here we go again.  I just can’t deal with the screams, the poking, the prodding.  Handing my son off to strangers (actually, all of the nurses know us well by now since we’ve been to the hospital 31 times with Christopher.  Many came to say hi and to ask what in the hell we were doing there with another one of our boys.  One of the new NP’s even asked Laura if she was in the medical profession since she anticipated everything that was going on.  Crazy.)  So, I let my mom and Laura take Wayne in for the pre-surgery stuff.  I walked outside to bow my head and let the sick feeling pass over me.  I’ve held off the tears so far.  Good

7:20am… I don’t want to miss giving Wayne a hug and kiss so I get back to the waiting room to love on him b/f they take him.

7:30am… they take him.  We are asked to wait in the conference room because EUA’s are always “extremely fast.”  Shouldn’t take but a few minutes.  We go to the room.  Laura flips through a magazine about 3 times.  I ask her “What did you read in that magazine?”  She looks as if I’m speaking Chinese and says to me “Oh… I looked at the pictures.”  As time goes by we realize that it is waaayy past the normal time for an EUA.  What’s going on now?  We don’t speak much during the time either.  I thumb through a magazine, dork around with my phone.  My mother messes with her phone the entire time.

8:15am… Dr. Greenidge walks in the room, sits down, looks down at the ground.  He has a very solemn look on his face and says “First, I don’t know.”  He then proceeds to tell us that he really doesn’t know.  He doesn’t know if Wayne has glaucoma, or something else … but what he does know are these facts:  He has cloudy corneas, he has enlarged corneas (both are signs of glaucoma), but he does not have tears in Habs Stria (sp?) which are always present in glaucoma, his optic nerves are perfect, his pressures are 45, but after you factor in the thickness of his corneas and other factors it is a relative pressure of 22 – which he says isn’t bad.  He also has never had a case with 2 glaucoma patients in the same family… ever.  It just doesn’t happen.  He is one of the top doctors in the field and has never seen a case with two in the same family.  There was another eye specialist surgeon there (Dr. Hess) and he had him take a look and they discussed what could be the problem… he was also perplexed.  He tells us that he wants to make some phone calls to other specialist around the country and get back to us in a day or two.  It could be glaucoma, but he just wasn’t sure.

He also asked me if I played the lottery?  I answered “Of course, I do…”

We were more upset at the unknown, at this point, than if we knew for sure that he did have glaucoma.  Time was moving by in very slow motion.

9:40am… We are getting in the car to drive home.  Silence most of the way.  At one point my mom asks me “Why do you think these unusual things happen to you?”  I didn’t really know how to respond to that question.  “I don’t”  I replied.

1:00pm… Dr. Greenidge’s assistant calls to tell us that surgery has been scheduled for next Monday… another EUA with a possible goinotomy.  So, obviously, he thinks it’s glaucoma right?  We wonder.

3:00pm.Monday… Another call to tell us that he has rescheduled the surgery to Wednesday because the hospital is booked up Monday.  Also, Dr. Greenidge has “that look” and is unapproachable.  He is perplexed, upset, and in deep thought as he moves routinely through the rest of his day.

Sleep doesn’t come easy .. even though we’re exhausted.

Tuesday morning (today)… we get a call from Janet, Dr. Greenidge’s assistant… Surgery is definitely a week from Wednesday and he is definitely doing a goinotomy on the right eye.  Also, we have surgery scheduled for the following Monday with a goinotomy on the left eye… for sure on all counts.

There you have it… there we have it.  He has glaucoma.  It all starts again.  I’m still shaking my head in disbelief.  Why are we so lucky as to have not one… but two cases of congenital glaucoma with my sons.  I can’t tell you all of the problems, concerns, and issues this has already caused in just one day… on second thought I will tell you in the days to come.  I can tell you for now though… I’m fragile, broken, confused, scared, and tired.  Very, very tired.  I just don’t know how we are going to make it through.  One is exhausting… two … I have no clue how to handle two …

Advertisements