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.
Sunday, October 4, 2009
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.
Tuesday, April 28, 2009
Why me? The question I was dreading
Last week, I was prepping my son for his quarterly eye-exam (the doc told us on Jan 19, "I'll see him in 3 or 4 months.") and he finally asked the question I've been dreading ever since he was diagnosed with Coats in July 2007.
He was fussing about the stinging he has to bear because of the eye dilation drops they put into both his eyes when he suddenly blurted: "Why did this happen to me, Mamma?"
I had anticipated this question, but I still didn't have an answer that was convincing.
"Well..." I hesitated, but then decided it was best to simply state the facts. "We don't know, baby. A man called George Coats discovered this condition, but the doctors still haven't figured why it happens."
"Does anybody in our family have it?"
"No, and it doesn't run in families. It just...happens."
"How can something just happen?"
My mind flashed back to the innumberable times when he'd dropped milk/juice/other stubborn liquids on the sofa or left his toy cars on the floor, almost causing a serious skid accident...and I smiled, grateful that I could manage a smile.
"Well, sometimes they just do. Take me...all the joints in the left hand side of my body are kinda loose."
"Loose? How did they get that way?"
"No idea. My left arm broke when the doctors were taking me out of your Grandma's tummy. And I can do some neat tricks with my left thumb. And you already know the doctors put in a screw below my left knee to prevent it from getting dislocated over and over."
He was quiet a bit, then said: "But the eye drops really sting." I was just grateful he's never complained about the cryo-related pain (mostly managed with painkillers and he doesn't remember the psot-op thrashing around).
"I know, baby. And I'm really, really sorry you have to go through that. But you see, the eye drops help the doctor look right into your eyes and see if everything's fine." He needs regular eye exams for the rest of his life, but I didn't feel like saying that out loud just then.
"Did it pain when they put the screw into your knee?"
I gulped - I still freak out a bit when I recall the pain of the dislocation. "No, they put me to sleep when they did that..."
"You had anaesthesia too!"
"Yes, I did. And then they put a cast on my leg with a little window at the knee to check on the stitches."
"Did you have to use a stick to walk?"
"Well, I had to use crutches first. And the first time I lowered my leg from the bed after the surgery, it was so painful that I had tears flowing down my face although I didn't mean to cry."
And then I told him about how I had stood there, at the foot of my bed, refusing to budge for God knows how long, hanging on to the railing for dear life. How I had finally taken three steps and was ready to collapse, too exhausted to climb back into bed. How I had learnt to walk, first with two crutches, then with one and then with a walking stick, and how my knee wouldn't bend much in the first few months so I would upturn a waste basket to rest my leg on at my very first job. And how I had one day phoned my doctor, without letting my mother know, and asked him if I would ever be able to fully bend my left knee again. "It will take time. Have faith," said my surgeon.
With Coats, time is not part of the equation.
Faith is all we have.
That's what I told my son: We may not know why, but we do have faith in the Almighty.
He nodded his head and cuddled up to me to go to sleep.
Munchkin's eye exam has been delayed to mid-May because his specialist is away attending a conference in Florida.
He was fussing about the stinging he has to bear because of the eye dilation drops they put into both his eyes when he suddenly blurted: "Why did this happen to me, Mamma?"
I had anticipated this question, but I still didn't have an answer that was convincing.
"Well..." I hesitated, but then decided it was best to simply state the facts. "We don't know, baby. A man called George Coats discovered this condition, but the doctors still haven't figured why it happens."
"Does anybody in our family have it?"
"No, and it doesn't run in families. It just...happens."
"How can something just happen?"
My mind flashed back to the innumberable times when he'd dropped milk/juice/other stubborn liquids on the sofa or left his toy cars on the floor, almost causing a serious skid accident...and I smiled, grateful that I could manage a smile.
"Well, sometimes they just do. Take me...all the joints in the left hand side of my body are kinda loose."
"Loose? How did they get that way?"
"No idea. My left arm broke when the doctors were taking me out of your Grandma's tummy. And I can do some neat tricks with my left thumb. And you already know the doctors put in a screw below my left knee to prevent it from getting dislocated over and over."
He was quiet a bit, then said: "But the eye drops really sting." I was just grateful he's never complained about the cryo-related pain (mostly managed with painkillers and he doesn't remember the psot-op thrashing around).
"I know, baby. And I'm really, really sorry you have to go through that. But you see, the eye drops help the doctor look right into your eyes and see if everything's fine." He needs regular eye exams for the rest of his life, but I didn't feel like saying that out loud just then.
"Did it pain when they put the screw into your knee?"
I gulped - I still freak out a bit when I recall the pain of the dislocation. "No, they put me to sleep when they did that..."
"You had anaesthesia too!"
"Yes, I did. And then they put a cast on my leg with a little window at the knee to check on the stitches."
"Did you have to use a stick to walk?"
"Well, I had to use crutches first. And the first time I lowered my leg from the bed after the surgery, it was so painful that I had tears flowing down my face although I didn't mean to cry."
And then I told him about how I had stood there, at the foot of my bed, refusing to budge for God knows how long, hanging on to the railing for dear life. How I had finally taken three steps and was ready to collapse, too exhausted to climb back into bed. How I had learnt to walk, first with two crutches, then with one and then with a walking stick, and how my knee wouldn't bend much in the first few months so I would upturn a waste basket to rest my leg on at my very first job. And how I had one day phoned my doctor, without letting my mother know, and asked him if I would ever be able to fully bend my left knee again. "It will take time. Have faith," said my surgeon.
With Coats, time is not part of the equation.
Faith is all we have.
That's what I told my son: We may not know why, but we do have faith in the Almighty.
He nodded his head and cuddled up to me to go to sleep.
Munchkin's eye exam has been delayed to mid-May because his specialist is away attending a conference in Florida.
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, January 11, 2009
Cryo and scary swelling
Munchkin's cryo procedure finally happened last Thursday. He was taken in around 9.30 and was out by 10.30 - on a guerney with a dextrose drip and oxygen mask. A few minutes later, however, he started to thrash around and scream again. The scary memories of his first procedure came flooding back. At that time, he'd been only five-and-a-half. This time, he was nearly seven and it took his father, the nurse and me to control him.
We asked for the anesthetist or someone from his team to come and adminsiter a sedative or a painkiller - even though I knew it would be a while before that took effect. I was holding down his legs and got kicked in my face and chest a couple of times. The nurse had a tough time holding his hand in place, otherwise he'd have yanked off the IV drip and done himself an injury.
My mother was away asking the nurses to ask for the doctors. A man in scrubs came in and administered a painkiller in his IV. It didn't seem to help.
After a few minutes - or was it an hour? - a stranger came and offered to hold down Poppet's legs (rarely anybody stays overnight in the eye hospital, so the ward is a large waiting room of sorts) and I relented, running off to see why the anesthesiologist was taking so long. I was hysterical and the floor supervisor ticked me off for 'disturbing others'. My apologies but at that point, I DIDN'T CARE!! Didn't she get that?
The anesthesiologist finally came. He's a pleasant man, with twinkling eyes and wispy grey hair. He was smiling when he admonished the nurse for not having called him earlier and was smiling when he told us that sedatives were essentially poisons so they needed to be administered carefully. He put something into Poppet's IV and my little fellow was quiet within the minute.
We breathed a sigh of relief. I was still crying when I apologized to the floor supervisor. The flip side to this was that Poppet slept and slept and slept - waking up only for a few minutes at a time after a couple of hours.
During that time, a number of people asked us what treatment Poppet had needed. One woman carressed Poppet's foot and said a silent prayer before saying: Don't worry, he'll be fine. Trust in God. Another man - I recognized him as the person who'd held down Poppet's legs when I'd gone to scream at the floor supervisor - smiled assuringly. It's at times like these that you have to believe that it is the kindness of strangers that keeps the world going. Thank you, dear people.
When we got home and took off the bandage, we were in for a shock. His right eye was swollen shut. That had never happened in the previous two rounds of treatment. The swelling didn't die down the following morning either. My husband and mother took him to the hospital again in the afternoon. The doctor said it was because of the cryo and it would start to subside in a couple of days.
I had a terrible time at work on Friday - again, not meant for this blog - but was relieved to know that his eye was fine.
The swelling did start to subside on Saturday evening.
By that time, however, I was something of a zombie. Still feel like one. But I wanted to put up this post, and thank those who prayed for my son. Shaun, Liz, Sally, Anissa, Poornima, Vani, Annelise, Nayana... my deepest thanks to each one of you.
Get well soon, Poppet. I hope you never need another round of Coats treatment in your life.
We asked for the anesthetist or someone from his team to come and adminsiter a sedative or a painkiller - even though I knew it would be a while before that took effect. I was holding down his legs and got kicked in my face and chest a couple of times. The nurse had a tough time holding his hand in place, otherwise he'd have yanked off the IV drip and done himself an injury.
My mother was away asking the nurses to ask for the doctors. A man in scrubs came in and administered a painkiller in his IV. It didn't seem to help.
After a few minutes - or was it an hour? - a stranger came and offered to hold down Poppet's legs (rarely anybody stays overnight in the eye hospital, so the ward is a large waiting room of sorts) and I relented, running off to see why the anesthesiologist was taking so long. I was hysterical and the floor supervisor ticked me off for 'disturbing others'. My apologies but at that point, I DIDN'T CARE!! Didn't she get that?
The anesthesiologist finally came. He's a pleasant man, with twinkling eyes and wispy grey hair. He was smiling when he admonished the nurse for not having called him earlier and was smiling when he told us that sedatives were essentially poisons so they needed to be administered carefully. He put something into Poppet's IV and my little fellow was quiet within the minute.
We breathed a sigh of relief. I was still crying when I apologized to the floor supervisor. The flip side to this was that Poppet slept and slept and slept - waking up only for a few minutes at a time after a couple of hours.
During that time, a number of people asked us what treatment Poppet had needed. One woman carressed Poppet's foot and said a silent prayer before saying: Don't worry, he'll be fine. Trust in God. Another man - I recognized him as the person who'd held down Poppet's legs when I'd gone to scream at the floor supervisor - smiled assuringly. It's at times like these that you have to believe that it is the kindness of strangers that keeps the world going. Thank you, dear people.
When we got home and took off the bandage, we were in for a shock. His right eye was swollen shut. That had never happened in the previous two rounds of treatment. The swelling didn't die down the following morning either. My husband and mother took him to the hospital again in the afternoon. The doctor said it was because of the cryo and it would start to subside in a couple of days.
I had a terrible time at work on Friday - again, not meant for this blog - but was relieved to know that his eye was fine.
The swelling did start to subside on Saturday evening.
By that time, however, I was something of a zombie. Still feel like one. But I wanted to put up this post, and thank those who prayed for my son. Shaun, Liz, Sally, Anissa, Poornima, Vani, Annelise, Nayana... my deepest thanks to each one of you.
Get well soon, Poppet. I hope you never need another round of Coats treatment in your life.
Cryo postponed, tantrums extended
Munchkin's cryo treatment got postponed last Wednesday. This time, he was aware that he hadn't eaten anything since Tuesday's dinner (late, at 10 pm) and worse, he wasn't the first in line for his procedure at the hospital. There were three babies - all under 2 years old - ahead of him.
It was tough on him: the little tyke kept saying he was hungry every half hour. Only my mother had the fortitude to keep him occupied for over two hours. At noon, a doctor from the OR said that an emergency implant surgery on an infant was taking far longer than expected. The earliest the OR would be free was 2 pm, but it could be longer. Munchkin's doctor too came out and said it might be better to reschedule the procedure for Thursday since the little fellow must be hungry.
So that's what we did - fed Munchkin and left the hospital.
After a quick lunch of McDonalds - coz Poppet wanted the toy that came with it, this time the hippo from Madagascar 2 - wherein the drive thru messed up our order (again!), I trudged to work to tackle work handed by a rather arrogant individual (long story, and not meant for this blog).
We normally get Poppet a small toy after his procedure - and this time, although the cryo was cancelled, he was adamant that he wanted a toy. He wanted mum to take him out in the afternoon - this is on a hot and sunny day, with no transportation available since we'd taken the car - so she called me and made me promise I or his father would get him something on our way back from the office. I spent a few harrowing hours at work while DH managed to pick up something for the kid at a toy store. We were late getting back and while speaking to my mother on the phone, Poppet came on the line. He asked his dad what he'd got for him and his father happened to say it was something small.
When we reached home (mum's home - in the same building) I found mum crying. Poppet was slightly insolent and I pretty much guessed what had happened. Ever since he'd learnt that the toy was 'something small' he'd taken off on my mother, saying she was "responsible" for the inadequate size of the toy. Under normal circumstances, mum would have given him a quiet dressing down (don't ask, she has her ways, and they involve no screaming and shouting, unlike yours truly). But she was already falling to pieces over his condition and him being hungry for more than half a day and having to go through the whole process again the following day. So she just broke down.
I felt it was inexcusable the way he'd behaved. He said he was sorry after he saw that his 'small' toy was actually a gorgeous racing car. But I couldn't get over his behavior so he got a stern lecture from me.
Later that night, I cried for a while after he'd gone to sleep, trying to tell myself that what I'd done was right. My head said it was, but my heart wouldn't forgive me. I still feel terrible about it - like a lesser being or something for having done what I did
It was tough on him: the little tyke kept saying he was hungry every half hour. Only my mother had the fortitude to keep him occupied for over two hours. At noon, a doctor from the OR said that an emergency implant surgery on an infant was taking far longer than expected. The earliest the OR would be free was 2 pm, but it could be longer. Munchkin's doctor too came out and said it might be better to reschedule the procedure for Thursday since the little fellow must be hungry.
So that's what we did - fed Munchkin and left the hospital.
After a quick lunch of McDonalds - coz Poppet wanted the toy that came with it, this time the hippo from Madagascar 2 - wherein the drive thru messed up our order (again!), I trudged to work to tackle work handed by a rather arrogant individual (long story, and not meant for this blog).
We normally get Poppet a small toy after his procedure - and this time, although the cryo was cancelled, he was adamant that he wanted a toy. He wanted mum to take him out in the afternoon - this is on a hot and sunny day, with no transportation available since we'd taken the car - so she called me and made me promise I or his father would get him something on our way back from the office. I spent a few harrowing hours at work while DH managed to pick up something for the kid at a toy store. We were late getting back and while speaking to my mother on the phone, Poppet came on the line. He asked his dad what he'd got for him and his father happened to say it was something small.
When we reached home (mum's home - in the same building) I found mum crying. Poppet was slightly insolent and I pretty much guessed what had happened. Ever since he'd learnt that the toy was 'something small' he'd taken off on my mother, saying she was "responsible" for the inadequate size of the toy. Under normal circumstances, mum would have given him a quiet dressing down (don't ask, she has her ways, and they involve no screaming and shouting, unlike yours truly). But she was already falling to pieces over his condition and him being hungry for more than half a day and having to go through the whole process again the following day. So she just broke down.
I felt it was inexcusable the way he'd behaved. He said he was sorry after he saw that his 'small' toy was actually a gorgeous racing car. But I couldn't get over his behavior so he got a stern lecture from me.
Later that night, I cried for a while after he'd gone to sleep, trying to tell myself that what I'd done was right. My head said it was, but my heart wouldn't forgive me. I still feel terrible about it - like a lesser being or something for having done what I did
Tuesday, January 6, 2009
Tonight, just a prayer
This morning, I was...well, not quite functioning. Now, just an hour before bed, I'm strangely calm. Tomorrow morning, we take Munchkin to the hospital for his third round of cryo - there's not too many you can do because cryo is destructive by nature.
If you read this, please pray that my son's treatment is successful and the leakage never, NEVER recurs.
Tonight, all I have is my son - the best thing that ever happened to me, the reason I'm alive. And I will keep the faith.
If you read this, please pray that my son's treatment is successful and the leakage never, NEVER recurs.
Tonight, all I have is my son - the best thing that ever happened to me, the reason I'm alive. And I will keep the faith.
Sunday, January 4, 2009
Am falling apart...
I honestly don't know what's happening to me. I take one look at my son and I feel like dissolving into tears. I'm terrified about the on Wednesday - as I've said over and over, the anesthesia is terrifying. I've myself dealt with it without trouble twice and this is going to the Shreyaan's third time, but somehow, this time I'm coming apart at the seams.
A little while back, he was giving me some lip and I had to get stern with him - and I was actually glad, because it meant a few moments of not feeling like my insides were melting. Somebody once told me I handle stress very well. If only they saw me now.
A little while back, he was giving me some lip and I had to get stern with him - and I was actually glad, because it meant a few moments of not feeling like my insides were melting. Somebody once told me I handle stress very well. If only they saw me now.
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