Emergency Room Visit!

Yesterday was quite a day.  Whew!  I’m sitting in my office working my butt off… focused… finally getting some motivation after a few weeks of being down…. when I get a call… It’s my wife… She is on the way to the hospital – in an ambulance!  Christopher fell at the playground while climbing a ladder, hit his head and passed out!

That is about all I heard as I hung up the phone and sped to the hospital.  I beat the ambulance there and the park where Christopher got hurt was only about about 75 yeard away from the hospital!  As he was pulled off of the hospital – strapped to a gurney, in a head brace, tied up so he couldn’t move… I heard him screaming and crying.  Broke my heart.  I held his hand every step of the way into the emergency room, as they checked him, did his x-rays, cat scan…. “Is his neck ok? Is he ok? Is his head ok? Is his brain ok?”  It was one of the most intense 2 hours I’ve ever experienced.  In the end he was ok from the fall.

But is he?  You see… we battle this damn disease every second of every day with him.  His eye pressure go up and it hurts his optic nerve.  A rise in blood pressure will raise the pressure in his eyes.  So, what sort of trauma was done to his eyes because of this common fall that happens every day?  It hurt my heart to see him lying there… and in the back of my mind… I’m worried about him screaming because they won’t get him out of the neck brace that is causing him to be so upset… and I’m thinking the whole time… his pressures must be through the roof!  “Can you turn the light off or down?” I beg… finally, they do.  One lady is screaming at the top of her voice at him, trying to calm Christopher down… “Get away from him and stop yelling in his face!” I tell her… she backs off.  “Shhhh… I know… I know… baby” I console him over and over for about 30 minutes, until, finally, they determine they can take the neck brace off.

You would think that dealing with this disease gets easier with time… that we could get it out of our heads at least at during the most intense times… but even during the emergencies… it is apparent… that it will consume my thoughts!

WHY?

 

Easter Egg Hunt!

We took Christopher to an Easter Egg hunt today! About 200 to 300 kids were there and it was a blast. We sat at the rope line waiting patiently for the hunt to begin… Christopher had is patch on and he doesn’t see so well … at all… with his left eye. Since, there were another 100 kids in his age group grabbing for eggs… we decided that part of his 30% without a patch on today was going to be the hunt. We just wanted him to have some fun and get some eggs!

Worked out ok. He had a BLAST! He even rode the Choo Choo Train later and bounced in the Bouncy Tent Thingie!

The rest of the day pretty much sucked for him… as it usually does. He kept his patch on a little better today than usual… But at one point this evening… I was sitting on the floor in front of the couch and he was “climbing” up me and onto the couch. He misjudged the couch edge and stuck his hand out to brace himself… laughing that genuine 2 year old laugh that says “I’m having the time of my life right this moment!”… and missed the edge! He fell right on his head and his neck twisted. I’m sure he will be sore in his neck for a couple of days. It hurt him and he cried for about 30 minutes. Just another side effect of this damn disease!

I hate it. Why does he have to have it? Why does he have to get hurt when we force him to wear a patch to make him better? F#$%^^G sucks! It took me down instantly. But, then again, if you read my blog… you know that isn’t hard to do these days.

 

Today wasn’t too bad…but we’re foolin ourselves!

Today started out crappy. Wife and I were a little antsy with each other. I had to get some work done and take advantage of the slow day everyone else in the world gets. So, I got up and went to work… but before I left… I had to do my daily duty – Make my son scream at me before he tells me to “have a good day!” I had to lay him on the floor… fight with him to put a drop in… and then hear him yell out in pain… scrunch his eyes shut hard in agony… and then ask me to “wipe it… wipe it.” Great way to start our day… every day!

Christopher didn’t get a nap today… so he was extra defiant tonight. But he missed me too… so he was in a good mood. He just wanted me to get him stuff all night… “apue Juice” “meylk” “blue one”(blankie) “udder one” (other blankie) hehe. Then just before bed… I had to torture him again! This disease really beats down your emotions. It never gets easier. I just wish I could become callous to the drops, the patches, the surgery… why? There is that damn question again… Why?

Just really getting tired… of it… every day… more and more exhausted. I just don’t know how much more we can take as a family! Sigh…

Yesterday, someone I really respect said to me that same old cliche’ I hear all the time when people find out about our problems… “God doesn’t give us more than we can handle”… and I get sick of hearing it. Mainly, because I think that is the biggest line of crap I’ve ever heard. First, of all… he has given MANY men in the bible “more than they can handle” and on purpose… Jonah, Paul (Saul), Daniel, Sampson, Adam and Eve, I could go on for hours… But she followed it up with something I haven’t heard anyone say… “but he sure takes us right there sometimes…” She compassionately asked if she could help us in any way… and I kept telling her to stop… it was just not the time to ask… but she kept offering her words of wisdom and compassion… and I couldn’t help myself… I started weeping… right there in front of about 4 or 5 people. I had to leave and compose myself.

I am 36 years old… and can’t control myself in public. This is what I’ve become… and it sucks… WHY?

 

Today was pretty tough…

Today. Tough. We scheduled an appointment for April 1st, to talk to Dr Greenidge about is concerns and his decision to put “implants” (valves) into Christopher’s eyes. My wife took Christopher for a follow up visit one week ago (This is only the 2nd visit in about 100 that I didn’t attend… ) when Dr Greenidge gave her the bad news that he wanted to do implants. We’ve been depressed ever since.

Today was the worst. A week’s worth of depression, sorrow, and worry is starting to take it’s toll. Laura and I are barely talking now. When we do… it is almost certain that it will be some sort of complaint or defensive comment. I am trying to stay calm… but I lash out at her for lashing out at me. I’m just no good at this whole “crappy life” thing. We both love Christopher so much that it is just too much to handle.

On top of what we deal with normally, My broker came to me and started offering to help in any way she could. She just did it at the wrong time. I don’t think, at first, she understood what sort of problems we face, daily, with this. So, she said she was sorry to hear things had taken a turn for the worse… and did what everyone does… started asking about the situation. The problem, as it always has been, is that it is difficult to explain to others that it can’t be cured, and that there is no way of “fixing” it. Then when she started to realize that it is a “deep” issue… she started offering help in many ways… she would love to babysit to let Laura and I go out, what do we need, etc. I just started to drip tears… not wanting to… but not able to help myself. It was a horrible feeling.

I really needed to stay late at work (I am behind on everything right now… after Laura left and I have to be the office manager and the lead agent on my team) and try to catch up on stuff PLUS I have to study for the state Mortgage Broker’s exam… but my wife got really upset that I wasn’t home to eat dinner. She just sounded like there was a real problem with that… even though we discussed 2 times today that I would be late.. unless I was able to get out earlier.

So, I decided that I would just come home. I don’t want this to tear us apart, but, unfortunately, I sacrifice work to come home. It is hard to make money if I can’t do what I need to do. Financially, we are in turmoil right now. We are living day to day. We aren’t the type of people to ask, beg, or borrow anything from anyone. So, we quietly scrape by right now.

Medical bills are mounting… we haven’t paid Laura’s deductible from last year $1,500 and we haven’t paid Christopher’s deductible this year $1,500. We spend about $10 per day patching Christopher – this is the worst part of all of this… we have to patch his right eye so that the left eye will keep working. He HATES them and cries, and cries, and rips them off at every chance he has to. This is why Laura stays home so that she can make sure he keeps them on. He just has such a strong spirit and won’t give up on it. Which is hard because, as parents, we want our children to be “fighters” and not give up. To endure through anything. And new we have to “break” him… It just keeps getting harder and harder to do.

Last year we spent over $11,000 out of pocket for medical bills – copays, premiums, 5 pairs of glasses, eye exams, patches, eye drops (another horrible part of our daily life! Twice a day we have to pin Christopher down… on the ground, force his eye open, and give him a drop of Timol – it stings him bad. He cries each time and says “it herwts… it herwts!.. ow… ow!”

So… long day… ended much worse than it started… and all of the problems are still here. That question keeps running through my head… all day… every day… WHY?

Why do I have to hurt my son… all day long with the patches? Why do I have to put drops in his eyes that sting him bad when he wakes and before he goes to bed? Why do I have to take him to the hospital 19 times and STILL have to worry about putting implants in his eyes? Why? Why?

This blog is good. Makes a good diary. I don’t really feel any better… yet… but this is the first time I can really feel like I’m talking to someone about it. I really don’t know who would even bother to read this depressing stuff… but it’s nice to get it out.

Maybe, just maybe, tomorrow will be better… I don’t really think that though… We will have a lot of sleepless nights and depressed days until we talk to Dr Greenidge and get some answers on the Implants. Why?

 

Doctor Greenidge

A Saint! Dr Greenidge is the doctor who done everything possible to this point… to keep Christopher’s sight.

I know that Christopher’s difficulties keep him up at night. Dr Greenidge loves Christopher. He loves what he does. He has been doing this for around 30 years. He has medical accolades throughout his career.

We are privileged to have him here in Largo!

Per Healthgrades.com:

Dr. Greenidge practices Ophthalmology in Clearwater, Largo, and Saint Petersburg, Florida, and Brooklyn, New York. Dr. Kevin Greenidge, a male, graduated from the Suny at School of Med and Biomedical Science with an MD and has been in the profession for 31 years.

 

What is Congenital Glaucoma

Simple – Pressure in the Eyes. In this case, congenital refers to the fact he was born with it. It wasn’t diagnosed until he was 3 months old… because there are no “screens” for it, no signs of it, and no way of knowing until it is almost too late to do anything about. We were lucky b/c even though our primary care physician had no clue… they worked immediately to get us to someone who did know. Often, mis-diagnosis can end in blindness.

 

The weight of the world…

“The weight of the world…”  What exactly does it mean?  Let me share my thoughts…

A child, vibrant in every way…

soaking life up every second of the day…

Looks to his father to protect him.

Why so many surgeries?

His father cries “Why can’t it be me?”

As he hangs his head and weeps.

My son has congenital glaucoma.  This is a very rare disease and not many people have ever even heard about it.  Here is my story:

My wife and I came home from work for lunch one hot summer day.  We are both Realtors.  It was July 27, 2006.  It just happened to by my wife, My son’s mother’s birthday.  Christopher’s grandmother, my wife’s mother, quit her job to watch Christopher for us so my wife could come back to work… had just laid Christopher down for his daily nap.  We ate some lunch and about the time we were ready to leave… Christopher started crying… He was getting up!  We were happy that we’d get to hold him, kiss him, and love on him before we went back to work that day.  The next sound I heard, and I’ll never forget it, was my wife screaming…

My son’s eye’s had turned completely white.  No color.  At all.  Just a milky white color…Fear overcame all 3 of us that day as we ran around the house yelling and screaming for about 2 minutes.  It was surreal and it felt like we were in a nightmare.  Finally, as we came back to the real world… we understood that we needed to see Christopher’s doctor right away.  We packed up the car and drove straight there, calling on the way.  When we arrived… every one of the nurses and doctors were waiting with a scary, solemn anticipation.  The waiting room was cleared (extremely unusual… in fact, the only time I’ve ever seen our Doctor’s office this way) and we were ushered to a room.  The Doctor was there within seconds and she was extremely confused.  She mumbled a few things, shook her head, and left in a hurry.  The nurse came in and said that the Doctor was making a few calls and would be back in a moment.  30 minutes went by.  I felt something was terribly wrong… Surely, the Doctor knew what was going on… Right?   Wrong.

Finally, I left the waiting room… not a soul in sight in the hallway… no doctors, no nurses, no patients (I’m telling you I thought I was in the twilight zone at this point – I actually tried to wake up from this nightmare at this moment)… I saw a nurse dart out of the “No Admittance” area … so I asked her what was going on?  She pulled me by my arm into the Doctor/Nurses only area, sat me down at a computer and asked me to google “pediatric opthalmologists”!  What?  Are you kidding me?  There were 9 nurses and doctors on various phones and computers calling out names of people who may be able to understand what was wrong with Christopher’s eyes!  As I called out different Doctors and Groups of doctors – We’ve called this one already, That one works with so and so, Who is next… Give me that number! – I realized several things at once: 1) We had a major problem. 2) We had excellent Doctors (Even though they didn’t know what was wrong , they were willing to admit it… instead of trying to hide it.) – They were searching immediately for someone to help.  3)Life as I knew it was about to change – forever.

On the way to All Children’s Doctors Group in St Petersburg, FL… my wife, mother-in-law, and I were still very frantic.  We still had no clue.  There were 100 questions going through our minds… But mostly we just asked WHY?  That is a word I have grown to hate.  That word eats at me from the inside out – every day of my life and it competes with my every thought.  WHY. WHY! WHY? Doesn’t even matter how you write it… It is the same.

We left the Opthalmologist office around 7pm at night.  We knew what was wrong.  We just had no clue what to expect.  This doctor was 100% sure it was Congenital Glaucoma, he just didn’t treat it.  Once again, (a small light in this dark story) we were lucky – He called around for us and found us a Doctor that just happened to have moved here very recently who specialized in cases like Christopher’s.  Dr Greenidge.  There is a name that brings tears of hope and makes my heart beat just a bit faster when I say it.  (My son, only 23 months old now, even says it.)  We couldn’t see him until the next day… Friday.

The ride home was dead silent.  All 3 of us hung our heads … almost in shame.  It was one of the longest drives I’ve ever taken… I don’t remember seeing a thing.  I just remember that damn word… WHY

The internet is an amazing thing.  It is a GREAT thing… and a HORRIBLE thing… And everything in between!  And we got all of that as we searched for everything we could find on his condition.  We didn’t sleep a wink that night as we both – silently – searched, and searched, and searched.  There isn’t much to know about it.  It’s pretty simple really.  The “drainage” system in the eyes – just didn’t form properly for Christopher.  He has Glaucoma.  It can’t be fixed as easily as someone who develops glaucoma later in life.  It can only be fixed with surgery… invasive surgery… painful… esploratory… sensitive… surgery… after surgery… after surgery… after surgery… after surgery… after surgery… after surgery…(19 trips to the hospital so far… about 100 visits to the specialist – doctor visits.)

So… That is how it began.  You would think that it gets easier… it doesn’t.  In fact, it seems to be getting worse and worse.  I’ll continue my story next time… I’ve got a lot to share… I don’t even care if anyone reads it.  It just feels good to get it out.  After 19 months of having it pent up inside… it is getting to us.

The weight of the world is:

Having a beautiful son… who has an energy that is unmatched… who doesn’t stop for anything… keeps going… soaking life up… learning… loving… smiling… laughing… growing… UNTIL… you put him in a car seat… and he smiles at you for a solid hour as you drive him to the place that is going to stick him with needles… put him under anesthesia…  weigh him… prod him, look at him, take him away from you… take his life away from your hands… drill holes in his eyes… cut his eyes… take measurements… then give him back to you screaming as he comes out of the surgery… crying as he looks for comfort… confused … just this morning… he was happy as could be… and now… all this pain… I can see it in his eyes… “Why Daddy? Why?  What did I do?  Why don’t you stop? Why do we keep coming back here? Why can’t the doctors just fix it?”

I feel like I’m weak… there are countless people who are a lot worse off than Christopher.  His biggest threat to his life is the anesthesia that he has to get every time he goes under… I understand that.  What is so hard to understand… is how much work it is to deal with this every day.  It just never ends…