On Monday, Dr. Capone was certain that the condition was a genetic disorder which results in deterioration of the retina due to a shortage (or lack of) the "glue" substance that the body creates to hold the retina layers together. This condition is passed from mothers to their sons, thus all of my boys might have been affected, and my nephews/male cousins as well. There is no treatment/cure for this eye disease and leads to a lifetime of vision problems that cannot be corrected to 20/20. AND, doc told Jack that he could never play contact sports :( BUT, call off those eye doctor appts, sisters! This diagnosis is no longer!
Jack had a fitful sleep last night. He tossed and turned and talked out. At one time, he was having a conversation with someone in the dream world and was explaining his eye problem to them..."Glasses will be good for me, but they won't help me" he told them. :(
The purpose of today's visit to the surgical center was for Dr. Capone to confirm his suspicions by viewing jack's eyes while under anesthesia. After he put Jack under, he came out and discussed more thoroughly the ultrasound pictures that they had taken on Mon and gave a more confident explanation that he was sure it was X-linked Retinoschesis. He was going to take more pictures and look more closely at the extent of the damage to the retina. I sat there watching the other sleepy parents. One couple looked distraught after Dr. Capone talked to them, others dozed. I'm not sure what we looked like....on our first trip, the front desk workers asked us if we were from out of the country (?!)....was it our "look" or our accent that gave it away? Wonder where they thought we were from...did we look Euro or Canadian? :)
To my surprise, Dr. Capone emerged again after only about 15 minutes and called us back to a private room. He had a look of concern and I started to worry a bit. His first words, "Well, it wasn't what I thought it was." was actually somewhat comforting and also freaky at the same time. "It is not the genetic disorder that I've been describing to you in detail for the past 2 days, but it does present with similar visual characteristics." I realized later that his look of concern, was really a bit of embarrassment that he had misdiagnosed in the first place.
SO, enter diagnosis #2, which is: Intermediate Uveitis, or more specifically Pars Planitis. It is an idiopathic (unidentified cause), very uncommon, condition in which the body begins to attack itself and causes an inflammatory response, in this case, in the eye. The result is a haze in the gel that fills the eye, and inflammatory debris settles in the bottom portion of the eyeball, creating a "snowbank" look and also cystic-like changes in the retina layers (which was similar to the other disorder). Bottom line, the debris causes the blurry vision and the cysts created the initial retinal bleed...AND, the "snowbank" must be eliminated to prevent more damage.
Jack emerged from the anesthesia just fine; however, his eyes were a bit sore. He looked so pathetic laying there, not able to open his eyes :( Dr. Capone felt very badly that he had told Jack, "no pain today"....but then when he was in there and checking the underneath side (and saw the snowbank) he had to prod and squeeze on his eyeball a bit to get a better view...ouch!
In all, our doc was SO thorough and quite humble in explaining the new information to us. He spent more time with us than any other doctor has...ever, I think. What a great experience we have had here...I'm so thankful :)
Thanks for all of the prayers everyone! We have received what we came for, and that is a proper diagnosis and plan for treatment. The goal then, is to eliminate the present cause and prevent further damage. Detroit, we'll be back in 6 weeks...please no snow next time.
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