Its been over a month since Joey's surgery. We've had 3 appointments to make sure that everything was healing properly...and yes, everything is healing properly. He is down to only the Prednisone drops 2x a day. He's back to doing all his normal activities, although he has to wear protective glasses when he does sports...which he should've been doing all along anyway. I remember I had posted a long time ago that we had bought sports glasses to protect his eyes. Now that he has had so much work done to his eye and it's still in the healing stage, we're more serious about it. Plus the fact that he has to protect his good eye is very important.
We took him in for a recheck a week after the surgery, and then another recheck a week after that. His vision has not been great, it seems he is seeing less than he did before. The first visit, Joey was really discouraged, and even was crying a bit. Craig was encouraging him, telling him not to give up hope...that his eye was still healing. Dr. T has said that so far the eye is healing and everything is looking good. He also said that because of all the Coats activity in his eye, he had done a lot of laser therapy, so there was still a lot of inflammation back there. So now we just had to wait for the fluid to drain, and also for the inflammation to decrease as his eye heals. These two things are factors in how much his vision would improve. Joey always seems to be encouraged after talking with Dr. T.
It has occurred to me, during this "waiting" period, that the first priority is to control the Coats' Disease...to get that leakage under control and get the fluid in his eye to drain, or get absorbed. The second priority is to maximize his vision. I'd been under the impression that any treatment would improve his vision..but the treatment is to stop the Coats. We've been seeing Dr. T every few months for years. We'd go in to see him, he'd check Joey's eye, and everything would look good. That's how I expected things would always be. So to have the Coats begin to be active again...it makes me angry.
We've encouraged Joey and been positive with him. We're praying for him always. I told him just tonight..."you never know what God is going to do, and you never know how He can use the hard things that we go through for something good".
I 'll keep you posted on his progress. In the meantime, keep my little guy in your prayers. And us.
5 comments:
Hi Liz -
I too hated going through the surgeries and treatments as a child (and as an adult) but as with anything I remind myself that it could be worse. At least this disease is contained to one eye.
For what reason is your son on Prednisone? I don't remember being on drops as a child (except maybe an antibiotic post-surgery). I developed cataract and glaucoma and had the catact removed. I am on Lumigan for the glaucoma (no side effects), however, the Alphagan drops I was on made me extremely tired and gave me quite a bit of eye pain.
Please know that although he may lose his vision in that one eye (worst case), he can still live a normal life. Albeit there are professions he will not qualify for (military, officer, some athletics) there will be plenty for him to choose from. Getting through these surgeries to get this stabilized is the roughest part.
Hi Karen -
I missed this comment - I just saw it! Thanks for your encouragement. The prednisone was for the inflammation as he healed. And recently, we found a little "cyst" on his eye surface. His Dr. said to keep with the prednisone in hopes that it would shrink it, but if it doesn't, then he would remove it surgically at a later date. And if he does that, then he might as well go int here and try to remove some scar tissue in hopes of trying to improve his vision a bit. It seems like its always "wait and see".
There are many people who have eye problems and they can remove by getting surgery but they should not take more time in surgery other it can be resulted in eye loss.
eye disorders
Hello,
My name is Jeremy Hillstrand. I am currently 27, and was diagnosed with stage 4 coats at the age of 3. It sounds like my surgical history is similar to your sons', although by age 8 I had undergone a total of 9 surgeries, with my last being at the age of 16. I would love to talk to you guys about my experience of growing up with only having sight in one eye, because let me tell you, I played Varsity Baseball and Golf in High School, and still play to a scratch handicap, all when my doctors said otherwise. My life has been anything but normal, and I'd love to shed some light and hope on what you guys are going through.
It doesn't seem like you have been on here for awhile, so shoot me an email when you get this.
Much Love,
Jeremy Hillstrand
Denver, CO
Hillstrand.Jeremy@gmail.com
Hi Jeremy - thanks for your comment. It is always good to talk to other people who are going through the same struggle. Yes - you're right - I haven't written a post lately. I think Facebook has stolen all my blogging time! :) But if you are on Facebook, there is a group for anyone with Coats' disease in their life. We share info and struggle and triumphs. See "The Jack Mcgovern Coats Disease Foundation" page, and I think there should be a link to the group there.
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