Things went well, otherwise I'd have posted earlier (I think!) The swelling (macular pucker) has totally subsided (the vitrectomy took place in May 2010) and it's taken that long for things to return to 'normal'.
It's been one long year since then. Possibly the worst year yet for our family as a whole. But the silver lining has been that Munchkin's Coats has been stable for over a year now.
The next eye exam is due in late September/early October. That'll be 18 months since his last cryopexy and laser. Wouldn't it be such a blessing if that eye exam came out clear too?
Showing posts with label Coats Update. Show all posts
Showing posts with label Coats Update. Show all posts
Sunday, August 7, 2011
Friday, October 15, 2010
Some more relief
We went back for the follow-up eye exam last Saturday. Munchkin got slightly irritated as usual with all the waiting. But after I agreed to Chinese for lunch, was not just well-behaved but was more or less stuck to me like super glue.
The doc said the condition was stable - and for the first time in the 3+ years that we've been seeing him - said that there was some evidence that Coats tended to stabilize for longer periods of time as children grew older. The younger you are when it gets activated, the more aggressive it is. (Munchkin was 5-1/2 when his condition was diagnosed and the doctor reckoned he'd had it for 2-1/2 years at the time.)
The OCT test showed that the macular pucker had more or less subsided completely and even the Fundus photos clearly showed fewer exudates. Thank you, God.
The vision in his Coats eye still isn't completely clear, but it is a lot better than it was. And the eye pressure is under control.
The doc also mentioned that Munchkin was the first child he'd operated upon for a vitrectomy due to Coats Disease. (I remember he'd done three other vetrectomies that day on children, but I guess now we know those weren't cases of Coats.)
(Oh, and there was a new and weird medical technician/optometrist who did Munchkin's refraction test to check his vision. We've never seen her at the hospital before. She didn't give him the regular test spectacles (don't know what they're called) into which the slip in the different lenses. Instead, she made him cover that eye with the palm of his hand - and I could see he was uncomfortable - and made him read the eye chart. If he adjusted his arm, she roughly pushed it up again! I bore around 5 minutes of that, before I stood up and asked her why she wasn't using the regular testing spectacles. She ignored me and made him read some more. But the next time she pushed his arm up again, I nearly shouted my question again. She didn't bat an eyelid, but did put those spectacles on and finished the exam. Mission accomplished.)
That evening, he rode his bicycle outside the apartment complex onto an outside road to come to a temple near our house. It was a Hanuman temple (we'd been to the Hanuman temple on Tughlaq Road in New Delhi back in May to ask for blessings ahead of Munchkin's vitrectomy) and though my heart was in my mouth for most of the time (the road goes uphill, is narrow, and has plenty of blind curves and a lane every 100 feet!) he managed it with aplomb. I was so proud. I love to see him ride his bike. I was able to learn it only when I was 13, and then I didn't get to practice much so I still can't ride one. :o( So I absolutely love to seem him whizz about.
postscript: He lost his second pair of glasses back in September and I had another one made. And the morning we had to go to the hospital, we couldn't find that pair either. Six days down, we still haven't found them. Glasses cost a pretty packet, and I'm really just tired of him misplacing important stuff - he has two sets of strings and really attractive looking glass cases and everything, but he just can't keep his things in a safe place. Sigh...
The doc said the condition was stable - and for the first time in the 3+ years that we've been seeing him - said that there was some evidence that Coats tended to stabilize for longer periods of time as children grew older. The younger you are when it gets activated, the more aggressive it is. (Munchkin was 5-1/2 when his condition was diagnosed and the doctor reckoned he'd had it for 2-1/2 years at the time.)
The OCT test showed that the macular pucker had more or less subsided completely and even the Fundus photos clearly showed fewer exudates. Thank you, God.
The vision in his Coats eye still isn't completely clear, but it is a lot better than it was. And the eye pressure is under control.
The doc also mentioned that Munchkin was the first child he'd operated upon for a vitrectomy due to Coats Disease. (I remember he'd done three other vetrectomies that day on children, but I guess now we know those weren't cases of Coats.)
(Oh, and there was a new and weird medical technician/optometrist who did Munchkin's refraction test to check his vision. We've never seen her at the hospital before. She didn't give him the regular test spectacles (don't know what they're called) into which the slip in the different lenses. Instead, she made him cover that eye with the palm of his hand - and I could see he was uncomfortable - and made him read the eye chart. If he adjusted his arm, she roughly pushed it up again! I bore around 5 minutes of that, before I stood up and asked her why she wasn't using the regular testing spectacles. She ignored me and made him read some more. But the next time she pushed his arm up again, I nearly shouted my question again. She didn't bat an eyelid, but did put those spectacles on and finished the exam. Mission accomplished.)
That evening, he rode his bicycle outside the apartment complex onto an outside road to come to a temple near our house. It was a Hanuman temple (we'd been to the Hanuman temple on Tughlaq Road in New Delhi back in May to ask for blessings ahead of Munchkin's vitrectomy) and though my heart was in my mouth for most of the time (the road goes uphill, is narrow, and has plenty of blind curves and a lane every 100 feet!) he managed it with aplomb. I was so proud. I love to see him ride his bike. I was able to learn it only when I was 13, and then I didn't get to practice much so I still can't ride one. :o( So I absolutely love to seem him whizz about.
postscript: He lost his second pair of glasses back in September and I had another one made. And the morning we had to go to the hospital, we couldn't find that pair either. Six days down, we still haven't found them. Glasses cost a pretty packet, and I'm really just tired of him misplacing important stuff - he has two sets of strings and really attractive looking glass cases and everything, but he just can't keep his things in a safe place. Sigh...
Saturday, July 17, 2010
Post-vitrectomy update
We had another follow-up exam at the hospital today. (The last one was on June 19, but I couldn't post right after - too much going on.) They did an OCT and progress seems good. The pucker is not so bad and 'high' any more. It seems to be subsiding. But the doctor says it will take time for it to go back down completely. Which means that Munchkin's vision is still a little blurry. But thank heavens it's not affecting his vision.
He's in a new school since the start of the new academic year (June) and likes it very much. He hasn't complained about any vision issues. So I'm just keeping my fingers crossed.
We couldn't meet the glaucoma specialist today, though. The post-vitrectomy medication was steroid based and caused his eye pressure to surge. He's been on eye drops to keep the pressure under control and it'd fallen significantly today. The retinal surgeon said it would be a good idea to check with the glaucoma specialist as to whether or not the drops needed to continue. (At our June visit, the glaucoma specialist had said that the drops would probably have to continue well into August.) We'll probably go back next Saturday and check on that.
Saturdays are really crowded at the hospital. Despite my best efforts, we didn't get there until 9.20 am and that led to everything else getting delayed. Not that I can do much to speed things up - nothing works... but I digress.
The retinal specialist wants to see us in 10 weeks' time, so I'll keep praying, keep my fingers crossed and hope for the best.
He's in a new school since the start of the new academic year (June) and likes it very much. He hasn't complained about any vision issues. So I'm just keeping my fingers crossed.
We couldn't meet the glaucoma specialist today, though. The post-vitrectomy medication was steroid based and caused his eye pressure to surge. He's been on eye drops to keep the pressure under control and it'd fallen significantly today. The retinal surgeon said it would be a good idea to check with the glaucoma specialist as to whether or not the drops needed to continue. (At our June visit, the glaucoma specialist had said that the drops would probably have to continue well into August.) We'll probably go back next Saturday and check on that.
Saturdays are really crowded at the hospital. Despite my best efforts, we didn't get there until 9.20 am and that led to everything else getting delayed. Not that I can do much to speed things up - nothing works... but I digress.
The retinal specialist wants to see us in 10 weeks' time, so I'll keep praying, keep my fingers crossed and hope for the best.
Sunday, May 9, 2010
Vitrectomy due
The laser and cryo (very little) that Munchkin had on 7 April did nothing for the membrane. So the doctor wants to go ahead with the vitrectomy (scheduled for 12 May). The good news is that they have some new equipment - finer needles, more accurate readings/images, etc. Which means that the scarring will be minimal and recovery should be faster.
I'm still pretty terrified because this is an actual surgery and not a 'procedure' involving laser and cryo beams. I've no idea what to expect with regard to scarring or how long he will be in pain. The doc says Munchkin will need to stay home for a week at least. (Which is fine because his school re-opens for the new year only on 2nd June) and should recover fully a week after that. Thing is, despite asking the doctor a lot of questions, I still have no idea what to anticipate during the recovery period.
I'm also nervous about the post-op 'emergence delirium' - which was pretty bad in April and was compounded by the fact that the little fellow had been ultra-cranky in the weeks before the procedure, throwing tantrums at the drop of a hat (and this was even before he knew he had to have another round of laser/cryo).
And this wasn't made any easier by the fact that the summer in Bangalore has been particularly hot this year. Normally, whenever it gets really hot (35 degC), it rains in the afternoon and things are more bearable for the next few days. This year, the much-awaited showers have been playing hide and seek and are pretty scant when they do deign to make an appearance. And Munchkin's room faced West, taking the full brunt of the sun at noon and for three hours after that. It never mattered before that the ward wasn't air-conditioned (indeed, in the '80s, most Bangaloreans didn't even need fans for half the year). This time, I'd like to ask for us to be in the ward on the other side. We have to stay there overnight, too - and that's not something I'm ready to even think about or plan for right now.
Right now, it's just praying, praying, praying that everything goes well, that there are no complications during or after the surgery, no nasty scar tissue forming later to warrant any furthe procedures, no return of the membrane, nothing! He's been through too much, my little Munchkin. I have no idea what good is going to come of this but I still believe that something good comes of everything we are made to endure. I keep the faith.
I'm still pretty terrified because this is an actual surgery and not a 'procedure' involving laser and cryo beams. I've no idea what to expect with regard to scarring or how long he will be in pain. The doc says Munchkin will need to stay home for a week at least. (Which is fine because his school re-opens for the new year only on 2nd June) and should recover fully a week after that. Thing is, despite asking the doctor a lot of questions, I still have no idea what to anticipate during the recovery period.
I'm also nervous about the post-op 'emergence delirium' - which was pretty bad in April and was compounded by the fact that the little fellow had been ultra-cranky in the weeks before the procedure, throwing tantrums at the drop of a hat (and this was even before he knew he had to have another round of laser/cryo).
And this wasn't made any easier by the fact that the summer in Bangalore has been particularly hot this year. Normally, whenever it gets really hot (35 degC), it rains in the afternoon and things are more bearable for the next few days. This year, the much-awaited showers have been playing hide and seek and are pretty scant when they do deign to make an appearance. And Munchkin's room faced West, taking the full brunt of the sun at noon and for three hours after that. It never mattered before that the ward wasn't air-conditioned (indeed, in the '80s, most Bangaloreans didn't even need fans for half the year). This time, I'd like to ask for us to be in the ward on the other side. We have to stay there overnight, too - and that's not something I'm ready to even think about or plan for right now.
Right now, it's just praying, praying, praying that everything goes well, that there are no complications during or after the surgery, no nasty scar tissue forming later to warrant any furthe procedures, no return of the membrane, nothing! He's been through too much, my little Munchkin. I have no idea what good is going to come of this but I still believe that something good comes of everything we are made to endure. I keep the faith.
Sunday, March 28, 2010
A slight cold and cough - I'm worried
When we took Munchkin to the doctor on Saturday, he had a very very mild dry cough. The anesthetist said we would be a better judget of how bad the cough was, or would get, and advised us to check with his pediatrician whether it would be okay for Munchkin to have general anesthesia on Wednesday.
When we got back home in the afternoon, he saw kids playing in the swimming pool in our apartment complex and wanted to go swimming for a bit. He'd fought with me so many times and thrown so many tantrums over the past 48 hours that I was totally exhausted with even trying to reason with him. And there were so many kids in the pool - and it was really warm - so I let him go for just 20 minutes. Big mistake. He now has a slightly runny nose and the cough seems slightly more frequent. We've started him on his regular cough and cold medicine that his pediatrician recommended, but I will need to get another opinion from the pediatrician on Tuesday evening to see if we can go ahead. We may have to delay the procedure if his condition doesn't improve. The doctor does these procedures on Wednesdays and Fridays, and I think the coming Friday is a holiday on account of Good Friday. My office is closed, but I'm not sure if the hospital is.
Keeping my fingers crossed and hoping that we can do what's best for Munchkin and everything works out fine. Please pray for him
When we got back home in the afternoon, he saw kids playing in the swimming pool in our apartment complex and wanted to go swimming for a bit. He'd fought with me so many times and thrown so many tantrums over the past 48 hours that I was totally exhausted with even trying to reason with him. And there were so many kids in the pool - and it was really warm - so I let him go for just 20 minutes. Big mistake. He now has a slightly runny nose and the cough seems slightly more frequent. We've started him on his regular cough and cold medicine that his pediatrician recommended, but I will need to get another opinion from the pediatrician on Tuesday evening to see if we can go ahead. We may have to delay the procedure if his condition doesn't improve. The doctor does these procedures on Wednesdays and Fridays, and I think the coming Friday is a holiday on account of Good Friday. My office is closed, but I'm not sure if the hospital is.
Keeping my fingers crossed and hoping that we can do what's best for Munchkin and everything works out fine. Please pray for him
Saturday, March 20, 2010
Epiretinal membrane due to Coats
Two weeks back, I took Munchkin for his six-monthly eye exam. And for some strange reason, I had this weird feeling in my gut that something wasn't right. It was that 15-month period again and I thought I was being superstitious or just plain idiotic. Unfortunately, we didn't get to hear that the disease was stable. There's now a membrane formed over the retina of his affected eye - the doctor says it's something related to Coats. It wasn't there when we had his last eye exam in August 09. His last procedure was in January 09 following the diagnosis that there was fresh leakage, in December 08
The only way to get rid of this membrane, is to surgically remove it - it's called a vitrectomy. Munchkin heard the doctor saying that and although he remained poker-faced through all the discussions I had with the doctor, he freaked out and started to cry soon after we had left the doctor's office and were waiting for the OCT and Fundus tests to be done. I was more or less crying myself, and therefore not the best person to be telling him that everything would be okay. He also seemed worried about the angiogram procedure that the doctor said he'd have to carry out before the surgery.
Eventually, we got the OCT test done and the doctor showed us the membrane. I then asked him to give Munchkin some reassurance and the reticent man that he is, he simply told him to not worry, he'd take care of everything. That didn't seem to go down pretty well with the little fellow. So I asked him to ask the doctor whatever he wanted. At which he promptly asked him whether his eye would get disfigured or if he could go blind during the surgery. While the doctor had explained that there was a 10% chance of retinal damage or detachment (I'm still quaking at the thought of that), he gave Munchkin a really reassuring pat on the shoulder and said: Absolutely not.
The kid's next question was: "Will the injection you give me for the angio hurt my veins?" To this doctor said: "A little. Do you remember how we gave you anesthesia the last time?" Munchkin has had three rounds of cryo and laser since 2007, so he nodded. "Well, it will be a bit like that," explained the doctor. "Okay, thanks." responded Munchkin and then was back to normal after that. Actually, a bit extreme, because he knew this was his opportunity to get me to buy him an insanely expensive and totally useless toy that he'd been hankering for for weeks. I admit, he read me right.
His last typhoid shot and five-year tetanus shot were due the following week and he dealt with those bravely enough. Now, I'm waiting to hear from our second consultant. Fingers crossed and hands joined in prayer.
Munchkin is moving ot a nwe school this June and is very, very excited about it. I wonder if he's worried that his eye will look worse after the vitrectomy and if he might get made fun of. Please pray for him - that the surgery, if we do have to have it, goes off well and he makes a quick and full recovery.
The only way to get rid of this membrane, is to surgically remove it - it's called a vitrectomy. Munchkin heard the doctor saying that and although he remained poker-faced through all the discussions I had with the doctor, he freaked out and started to cry soon after we had left the doctor's office and were waiting for the OCT and Fundus tests to be done. I was more or less crying myself, and therefore not the best person to be telling him that everything would be okay. He also seemed worried about the angiogram procedure that the doctor said he'd have to carry out before the surgery.
Eventually, we got the OCT test done and the doctor showed us the membrane. I then asked him to give Munchkin some reassurance and the reticent man that he is, he simply told him to not worry, he'd take care of everything. That didn't seem to go down pretty well with the little fellow. So I asked him to ask the doctor whatever he wanted. At which he promptly asked him whether his eye would get disfigured or if he could go blind during the surgery. While the doctor had explained that there was a 10% chance of retinal damage or detachment (I'm still quaking at the thought of that), he gave Munchkin a really reassuring pat on the shoulder and said: Absolutely not.
The kid's next question was: "Will the injection you give me for the angio hurt my veins?" To this doctor said: "A little. Do you remember how we gave you anesthesia the last time?" Munchkin has had three rounds of cryo and laser since 2007, so he nodded. "Well, it will be a bit like that," explained the doctor. "Okay, thanks." responded Munchkin and then was back to normal after that. Actually, a bit extreme, because he knew this was his opportunity to get me to buy him an insanely expensive and totally useless toy that he'd been hankering for for weeks. I admit, he read me right.
His last typhoid shot and five-year tetanus shot were due the following week and he dealt with those bravely enough. Now, I'm waiting to hear from our second consultant. Fingers crossed and hands joined in prayer.
Munchkin is moving ot a nwe school this June and is very, very excited about it. I wonder if he's worried that his eye will look worse after the vitrectomy and if he might get made fun of. Please pray for him - that the surgery, if we do have to have it, goes off well and he makes a quick and full recovery.
Sunday, October 4, 2009
It's still stable
I can't apologize enough for not having posted this 6 weeks back when we first got the news - which tells me I was doing too much and not thinking straight.
Munchkin's Coats is STABLE and our poker-faced, near-reticent doctor went to the extent of saying it was "better" - which must be true, because he's asked to come after SIX months! :o) Now that's what I call GOOD NEWS!
Thank you, dear God.
Munchkin's Coats is STABLE and our poker-faced, near-reticent doctor went to the extent of saying it was "better" - which must be true, because he's asked to come after SIX months! :o) Now that's what I call GOOD NEWS!
Thank you, dear God.
Monday, May 18, 2009
Yay!
The Coats is stable!! Even better, some of the exudates seem to have been absorbed! :-)
The wait for the appointment seemed interminable. The April 19th date got pushed to the 23rd, which got pushed to May 16, and then today, the 18th. We called ahead to confirm that Munchkin's doctor had actually come in and then set out to the hospital, a 45-minute drive from our house.
When we got there, we found he had been called away for an emergency surgery. Decided to wait it out. Got the little fellow's vision checked (status quo maintained, another reason to cheer!) and then got his eyes dilated. This time, he cribbed very little.
In fact, it was kinda the opposite from a year ago. His father and I used to tell him stories to keep him occupied. This time, he was the one telling me stories - all with his eyes closed.
Even after his eyes had dilated, we had to wait a good hour, during which time he got impatient, so he and his father went for a walk around the hospital. And I actually fell asleep in the crowded waiting room. Then suddenly, the doctor's assistant was calling us and we were in his room. Munchkin settled into the chair and the doctor carried out his exam.
"It's better," was the first thing he said, and I nearly gasped from sheer relief! He then went on to explain that some of the exudates had absorbed. Then said to come back in three months and keep a look out for any complaints regarding deteriorating vision. His macula is still safe (thank you, dear God) but we should be careful.
And that was that. :-) A three-month reprieve, but a reprieve. And for that, I'm grateful.
The wait for the appointment seemed interminable. The April 19th date got pushed to the 23rd, which got pushed to May 16, and then today, the 18th. We called ahead to confirm that Munchkin's doctor had actually come in and then set out to the hospital, a 45-minute drive from our house.
When we got there, we found he had been called away for an emergency surgery. Decided to wait it out. Got the little fellow's vision checked (status quo maintained, another reason to cheer!) and then got his eyes dilated. This time, he cribbed very little.
In fact, it was kinda the opposite from a year ago. His father and I used to tell him stories to keep him occupied. This time, he was the one telling me stories - all with his eyes closed.
Even after his eyes had dilated, we had to wait a good hour, during which time he got impatient, so he and his father went for a walk around the hospital. And I actually fell asleep in the crowded waiting room. Then suddenly, the doctor's assistant was calling us and we were in his room. Munchkin settled into the chair and the doctor carried out his exam.
"It's better," was the first thing he said, and I nearly gasped from sheer relief! He then went on to explain that some of the exudates had absorbed. Then said to come back in three months and keep a look out for any complaints regarding deteriorating vision. His macula is still safe (thank you, dear God) but we should be careful.
And that was that. :-) A three-month reprieve, but a reprieve. And for that, I'm grateful.
Monday, January 19, 2009
Post-cryo eye exam & Back to school
I made a big mistake this morning. I told my son that his eye exam today would not involve dilation drops. I thought I was right because the doctor had never had his eyes dilated so soon after a round of cryo. But this time he did, and I was in the dock for my 'false promise'.
Worse, it took inordinately long for our turn to come (which meant I didn't get to work until lunch!) during which time the little rascal whined and whined (until we forced him to eat something - he was better after that.)
When we finally got to the doctor, he said the cryo had been effective. The next check will be in late April/early May.
We had a bite to eat at the hospital canteen (they make the most wonderful idlis - Munchkin's favourite food after 'red chicken') but had to wait some more because a couple of details on his discharge summary were incorrect. In fact, there are still some errors - but we didn't have the time - and I didn't have the patience - to wait around some more.
I actually wanted to take an autorickshaw and go to the office straight from the hospital, but DH said they would drop me in the car. And then we go into a series of some seriously demented traffic jams, during which time the cacophonous offspring nearly drove me deaf and mad. I made some very loud threats and sulked for the hour it took to travel 12 km!
Anyway, the little tyke goes back to school tomorrow. I need to have a word with his class teacher not to mollycoddle him needlessly. I'm a bit worried about Munchkin's behavior - he's been trying to leverage this condition to get new toys and eat junk food. And constantly whines! About the stupidest things. I'm at my wits' end, trying to balance his tantrums with his eye condition. I hope his teacher has better luck!
Worse, it took inordinately long for our turn to come (which meant I didn't get to work until lunch!) during which time the little rascal whined and whined (until we forced him to eat something - he was better after that.)
When we finally got to the doctor, he said the cryo had been effective. The next check will be in late April/early May.
We had a bite to eat at the hospital canteen (they make the most wonderful idlis - Munchkin's favourite food after 'red chicken') but had to wait some more because a couple of details on his discharge summary were incorrect. In fact, there are still some errors - but we didn't have the time - and I didn't have the patience - to wait around some more.
I actually wanted to take an autorickshaw and go to the office straight from the hospital, but DH said they would drop me in the car. And then we go into a series of some seriously demented traffic jams, during which time the cacophonous offspring nearly drove me deaf and mad. I made some very loud threats and sulked for the hour it took to travel 12 km!
Anyway, the little tyke goes back to school tomorrow. I need to have a word with his class teacher not to mollycoddle him needlessly. I'm a bit worried about Munchkin's behavior - he's been trying to leverage this condition to get new toys and eat junk food. And constantly whines! About the stupidest things. I'm at my wits' end, trying to balance his tantrums with his eye condition. I hope his teacher has better luck!
Saturday, January 17, 2009
Out of the haze...somewhat
It's been an awful couple of weeks in terms of endurance. The one bright spot has been that the swelling in Poppet's eye is so much lower now. He's going to have a black eye, though, now that the swelling is down.
He's been very cranky - throwing tantrums and whatnot. He broke his spectacle frames a fit of anger last week and I've had to shell out a nifty sum for a new pair because the lenses were too small to fit into any new pair we checked out. He'll get his new pair next Thursday. Which means he'll have to wear plain glasses to school on Tue & Wed. We have a follow-up doctor's appointment on Monday morning: and I'm hoping that the doctor will give him something to make the swelling go away quickly.
We spent the day out with my mom today. First to the opticians, then to a store, then to a great meal at restaurant. It was nice, really.
He's been very cranky - throwing tantrums and whatnot. He broke his spectacle frames a fit of anger last week and I've had to shell out a nifty sum for a new pair because the lenses were too small to fit into any new pair we checked out. He'll get his new pair next Thursday. Which means he'll have to wear plain glasses to school on Tue & Wed. We have a follow-up doctor's appointment on Monday morning: and I'm hoping that the doctor will give him something to make the swelling go away quickly.
We spent the day out with my mom today. First to the opticians, then to a store, then to a great meal at restaurant. It was nice, really.
Sunday, December 21, 2008
More treatment needed
The leakage has started again. We found out at the hospital yesterday. Munchkin was really irritated about keeping his eyes closed for them to be dilated. And somehow, ever since we left home, I was expecting bad news. We've had three exams in the past year, all of which indicated that my son's Coats was stable. I had wondered whether our good fortune would sustain.
This time, the exudates (old leakage) had reduced, but other blood vessels had swollen and have begun leaking. Amazing, how quickly things can change in four months. The good news is that these vessels are still a decent distance away from the macula, so by God's grace his vision remains unaffected.
I was in such a tizzy after having the Fundus photos taken that I agreed to leave the hospital without thinking. Poppet's father wanted to delay it until after we come back from his parents place - which would make it another two weeks. By that time, Poppet's school would have started again. I agreed at the time but something didn't seem right....anyway, now I'm hoping to fix procedure for next Wednesday. We leave for his grandparents' place on Saturday.
The whole general anesthesia thing still gives me the jitters. And there's so much in flux at the office. I have a hundred loose ends to tie up before I can go away without worrying about being fired while I'm away. :-P
More after we've organized everything. Hang in there, Munchkin. I have faith this will all work out.
This time, the exudates (old leakage) had reduced, but other blood vessels had swollen and have begun leaking. Amazing, how quickly things can change in four months. The good news is that these vessels are still a decent distance away from the macula, so by God's grace his vision remains unaffected.
I was in such a tizzy after having the Fundus photos taken that I agreed to leave the hospital without thinking. Poppet's father wanted to delay it until after we come back from his parents place - which would make it another two weeks. By that time, Poppet's school would have started again. I agreed at the time but something didn't seem right....anyway, now I'm hoping to fix procedure for next Wednesday. We leave for his grandparents' place on Saturday.
The whole general anesthesia thing still gives me the jitters. And there's so much in flux at the office. I have a hundred loose ends to tie up before I can go away without worrying about being fired while I'm away. :-P
More after we've organized everything. Hang in there, Munchkin. I have faith this will all work out.
Friday, December 19, 2008
Pre-eye exam jitters
Last Christmas, I was thrilled to post that my son's Coats Disease had stabilized after two rounds of cryo and laser. It was my best Christmas gift ever.
Now it's that time of the year again. And just like last year, the eye exam has been delayed twice for one reason or another. He's actually not past his due date but I usually start early because I work myself up into such a frenzy that I want to know the results as soon as possible. He's had two more eye exams (one in March, the other in August) and the doctor says there's been no fresh leakage. The exudates (existing leakage) are still there, though. The doctor says they'll get absorbed over time, or he can use laser.
The kid also has glasses now - very, very low power and in both eyes. He also hasn't complained of any floaters or other discomfort throughout the year.
This time, we've kept missing the doctor. he was away for an emergency surgery the first time and the next week, I clean forgot. The stress - a long story not involving my son and meant strictly for my other blog - is making me senile. We were all set for tomorrow, but it turns out the doctor's going to be in surgery again.
On Monday, the kid has his school's annual program. Tuesday's supposed to be a "bad day" for kids to be taken to a hospital; Wednesday the doctor's in surgery again; Thursday's Christmas, so the hospital OPD is closed; and Friday's surgery day again. Saturday we're leaving to visit my in-laws for a week. And then school re-opens again. And I am falling apart with the stress. It always builds up in the days running up the test.
A few days ago, a colleague mentioned my son's case to her eye doctor. He doesn't know my son's doctor but recommended someone else in the city. So that's another thing driving me crazy - do we stick by our doctor or get a third opinion (we've already had a second opinion - and it matched our doctor's).
Anyway, I'm sooo hoping the doctor will be able to spare some time to see my son tomorrow. Hopefully his assitant will be able to give me a clearer reply.
I honestly don't think I'll be able to go two weeks without knowing how my son is doing. The thing is, his condition has been stable since the last cryo in Oct 07 - which makes me wonder if all this is too good to be true.
I'm hoping and praying...God bless you little fellow. You're the best thing that ever happened to me.
Now it's that time of the year again. And just like last year, the eye exam has been delayed twice for one reason or another. He's actually not past his due date but I usually start early because I work myself up into such a frenzy that I want to know the results as soon as possible. He's had two more eye exams (one in March, the other in August) and the doctor says there's been no fresh leakage. The exudates (existing leakage) are still there, though. The doctor says they'll get absorbed over time, or he can use laser.
The kid also has glasses now - very, very low power and in both eyes. He also hasn't complained of any floaters or other discomfort throughout the year.
This time, we've kept missing the doctor. he was away for an emergency surgery the first time and the next week, I clean forgot. The stress - a long story not involving my son and meant strictly for my other blog - is making me senile. We were all set for tomorrow, but it turns out the doctor's going to be in surgery again.
On Monday, the kid has his school's annual program. Tuesday's supposed to be a "bad day" for kids to be taken to a hospital; Wednesday the doctor's in surgery again; Thursday's Christmas, so the hospital OPD is closed; and Friday's surgery day again. Saturday we're leaving to visit my in-laws for a week. And then school re-opens again. And I am falling apart with the stress. It always builds up in the days running up the test.
A few days ago, a colleague mentioned my son's case to her eye doctor. He doesn't know my son's doctor but recommended someone else in the city. So that's another thing driving me crazy - do we stick by our doctor or get a third opinion (we've already had a second opinion - and it matched our doctor's).
Anyway, I'm sooo hoping the doctor will be able to spare some time to see my son tomorrow. Hopefully his assitant will be able to give me a clearer reply.
I honestly don't think I'll be able to go two weeks without knowing how my son is doing. The thing is, his condition has been stable since the last cryo in Oct 07 - which makes me wonder if all this is too good to be true.
I'm hoping and praying...God bless you little fellow. You're the best thing that ever happened to me.
Wednesday, March 26, 2008
Coats Update: All clear for now
On Tuesday, Poppet had an appointment with his eye doctor. It took longer than usual because we wanted to have his vision checked before his eyes were dilated. (We discovered that he has a power of 0.5.) But the real good news was the fact that there has been no fresh leakage since October. The exudates are still there, but the doctor still feels that this could be absorbed by the body over a period of time. No laser needed for now. Thank you, dear God.
His doctor doesn't talk much so we asked him a lot of questions. Could Munchkin go to the beach? Go swimming? Play whatever games he wants to? Not that he hasn't done that so far, but we just wanted a confirmation. And we got one. :-)
So we spent most of this evening trying to plan a beach holiday over the long weekend coming up on April 5. Naturally, tickets are almost impossible to get. Flights are too expensive. After many phone calls, web searches and frantic bookings and cancellations, it looks like we're going to Mangalore, on the west coast. The tiny resort - right on the beach - says rooms are available and we've gone ahead and booked the bus tickets. I'm only waiting for a confirmation from them tomorrow morning.
We haven't been on a vacation in over 18 months. In the meantime, the little rascal's friends have gone on cruises, treks and whatnot with their families. It's not that we couldn't afford a short holiday, but every time he had a break from school, there was an eye procedure or check-up scheduled. Hope everything goes well. Fingers crossed. :-)
Munchkin's next check-up is 5 months later, in late August.
His doctor doesn't talk much so we asked him a lot of questions. Could Munchkin go to the beach? Go swimming? Play whatever games he wants to? Not that he hasn't done that so far, but we just wanted a confirmation. And we got one. :-)
So we spent most of this evening trying to plan a beach holiday over the long weekend coming up on April 5. Naturally, tickets are almost impossible to get. Flights are too expensive. After many phone calls, web searches and frantic bookings and cancellations, it looks like we're going to Mangalore, on the west coast. The tiny resort - right on the beach - says rooms are available and we've gone ahead and booked the bus tickets. I'm only waiting for a confirmation from them tomorrow morning.
We haven't been on a vacation in over 18 months. In the meantime, the little rascal's friends have gone on cruises, treks and whatnot with their families. It's not that we couldn't afford a short holiday, but every time he had a break from school, there was an eye procedure or check-up scheduled. Hope everything goes well. Fingers crossed. :-)
Munchkin's next check-up is 5 months later, in late August.
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