Of course, the same old story… “Unfortunately, we’ll have to see exactly what we need to do when we go in the eye again… on April 28th.” Sucks.
I love our doctor… he is very realistic and calming. He knows what he is doing. He answers our questions. He is sure of hand. He is fantastic at what he does. I am very thankful that we have him, Dr Greenidge, as our doctor.
That being said… I hate this disease. I hate this disease. I hate this disease! We found out today that Christopher will, more than likely, get implants in his eyes when we go to the hospital on 4/28/08 (*His birthday by the way… woopee…Happy Birthday, son… a new set of Valve Implants for you! Don’t you just love daddy now!) That is going to be extremely tough to deal with, since we’ve tried NOT to have to do that since day one of this. Dr Greenidge said that he’s had pretty good success with them and that we won’t be using the Ahmed valves… he prefers the ones without “valves” since it is one less thing that can stop working. I guess that is good. What do I know…
Anyway, I guess the idea is to get the pressure down from a normal range of 20-22 to a (from what I can tell after today’s consultation) “lower” normal pressure of around 12-16. I guess this is really important for Christopher, since he has lost a lot of tissue from his Right Optic Nerve. This is bad news. If we don’t get the pressure much lower than “normal” he could lose much more, or even all of, the cell tissue there and go, of course, blind. (*Just typing that makes me shake a little… and makes me feel a sick, sinking feeling inside.) So, we put a valve in… see how it “takes” (I guess the first few months with them in are the hardest part), and put another one in if the first one isn’t enough. Just makes me sick that I have to put my innocent, 2 year old son through this. (<scream>)
On the 1 hour drive home today, from the doctor’s office, my wife and I dreamed about what life would have been – had nothing ever gone wrong with Christopher’s eyes. This is a pretty revealing thought process:
Christopher would be in Montessori School… He is such a bright child… and that would only encourage his desire to learn! What a nice dream!
Laura and I would both be working… and we’d be on top of our profession… not near the top… on top! We’d own our town as Realtors… we wouldn’t have ONLY WORKED an average of 15 hours per week over a year’s time (the first year Christopher had is problems) … instead… we’d have worked full time and more… and made a killing… instead of losing market share… losing drive… losing focus… losing opportunities…
Laura’s mother, who quit her job of many years to watch Christopher… just after he was born, would still be watching Christopher… we had to have Laura stay home because of the emotional and financial strain of all of this just after she went back to work with me. So, we had to let her go… and she then had to find a new job… That was pretty difficult for her.
Our son would love being outside in the sunshine, here in sunny Florida! Currently, he absolutely hates the sun. It is a huge bother to him. It pester’s him and makes him extremely tired… since we patch his right eye to make his left one stronger… the sun only bothers it and irritates it. He mostly just wants to sleep outside if it is really bright. And summer is on it’s way… woopee…
Just the money, out of pocket, alone we’ve spent… we’d be able to do a lot more for our future… (about $30,000 over the last 2 years so far… out of pocket!) Wow… what a large amount of money this has caused us to spend… in addition to about 17 hours per week of lost work time… and completely forcing one of us out of our career. Amazing… Astounding.
We’d actually be able to hire a babysitter every now and then… It is just so difficult to even “want” to get out… after dealing with everything this encompasses … every day… every night… all day… all night.
We’d still be lost and frightened when we have to go to the hospital… I’ve had 2 surgeries in my life. I hate hospitals. Up until this happened with Christopher… I didn’t know the first thing about Health Insurance, Hospitals, Intake, Billing problems, etc.
We still wouldn’t know what in the world – some things were – opthalmic pediatrician, congenital, congenital glaucoma, trabeculectomy, myomiticin C, goiniotomy, goinosurgery, muscle light, the entire workings of the eye, hab strius (sp), corneal tear, cosopt, trusopt, timolol, eye myd, ahmed valve, and so many more things… weird. Never even knew these things existed. Never cared. Now… I hate them all. But Necessary… I guess.
And, oh… the things I’ve learned that are so important now to us… and we would have never cared about these things in our dream:
There is about a 1 in 100 chance that a child can die or be severely hurt every time they go under the anesthesia. Let’s see… 20 times as of 4/28 … in 2 years… that makes 10 more years… until 100… so… by age 20… he will be defying the odds, provided nothing happens to him until then! No, we won’t need as many surgeries, we hope, by the time he is about 5 or 6. But, the way our luck has been… I won’t hold my breath.
I could write for hours on the different research that has been done on “eyes” that have been operated on… the good reports… the bad ones… researching if this surgery or that treatment is better or worse than an alternative… if this valve or that valve is better (silicone or polypropelne?) (valved or non valved?) (trabeculectomy vs. trab + trabeculotomy + myomiticin C or are either one of them better than valves?) (valves more effective if implanted at age 1, 2, 3, and for how many years… 90% at year one, 70% at year 2, 40-60% at year 3…) ouch… lots of info in my head since this all happened.
Maybe, there would be a chance that I would still be an eternal optimist! I had been up to that point. I remember smiling so much that my cheeks hurt… quite often. Now… I don’t ever think I’ll smile enough to hurt my cheeks… ever.
Life would truly be a “dream.” And what a dream it was. We didn’t cry… like I thought we would when I envisioned us having that talk (I’d thought about it many times… but it is hard to actually talk about it….) we were just… solemn….
One last thought came to me just now… and I’ll end on this note… it is a very sad one… one that is actually bringing a fresh wave of sorrow to me… I remember boasting to EVERYONE I knew… for a solid 3 month … almost up until the day my son had his first symptom (his eye turned white)… I remember the “pride” I exuded over MY son…. telling everyone… every day… someone new…
“My son is as healty as an ox! That’s what the doctors keep telling us!”
Boy… what a horrible, tragic mis-belief that was. I went from top of the world … to… as low as I could ever get… emotionally.
why? why? why?
