Eye pressure's OK

We weren't able to meet the Glaucoma specialist last week, so there was little choice but to spend another Saturday morning at the eye hospital. Thankfully, there was no dilation of the eyes involved. And after a bunch of other tests (refraction and eye pressure) the consultant finally said that Munchkin didn't need the eye drops any more. :o)

We go back in September for a regular follow-up.

Vitrectomy on hold, laser next week

I'm going to be really quick about this, because frankly, my mind is really numb. It's not just that the Coats has become active again, it's just a whole lot of stuff around the house and the little fellow's tantrums, especially at sleep time.

Munchkin had an angiogram today. He did cry a bit - more because he was just plain scared rather than the actual pain of having a needle injected into a vein on his hand. And then he threw a tantrum because he had to have his blood checked for his haemoglobin levels. (He had his tetanus and typhoid boosters the Saturday before last, so he was really upset over all the needle pricks.)

Having looked at the angiogram, the doctor said he wanted to keep the vitrectomy on hold, describing it as 'major surgery' this time (sonny would need to be home for three weeks) and said he would rather do another round of laser and cryo. After six weeks, he would see how the response was and then decide on the vitrectomy. I know this sounds crazy, but I had kind of resigned myself to the vitrectomy so this came as a surprise. And while I was over the moon that my son didn't need actual surgery, the fact that he might still have to have it two weeks before his school (he's moving to a new one) reopens for the new academic year (June 1) and miss his first 10 days had me worried. (I had to change schools a lot when I was a kid because we moved around so much and I know how tough it can be to adjust to new surroundings.)

I still haven't been able to get the second opinion based on the tests - the other doctor hasn't responded over e-mail and I haven't been able to reach him on the phone either. (I wonder if I should be trying harder - like I said, my mind is so not functioning correctly right now!)

So that's the update for now. I hope to write again soon.

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!

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.

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.

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

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.

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.

My six-year-old has a crush! :-)

Another milestone. Munchkin's first self-professed crush! He's six. She's five-and-something and his classmate. He's known her since last year but didn't pay much attention to her. The Sports Day Marching Parade changed everything. He was leading it and she was marching beside him, holding up the placard with the name of their class on it.

For a while now, Munchkin has had his life planned out. He has to study hard (not that he likes it too much) and get into a good college, get a good job, get married, have a kid or two whom he wants his grandmother to raise (because their mother will be !) Not me, his grandmother, please note. Erm...right. Grandma will be past eighty then, but he's sure she'll still be just as pretty as she is now.

So anyway, it took me a while to coax it out of him but here are the cute details. Her name is Shalika. Why does he like her? "She's nice." What else? "She's brown, like me. Almost everyone else in our class is so fair." (He says that without prejudice...it's just a difference in appearance, nothing else. At least he doesn't seem to be obsessed with fairness like the rest of the country.)

That's good. What does he like about her? "She says such funny things and makes me laugh." Like what? "I'm not sure. I don't understand everything she says. When she speaks in English, she speaks very fast so I don't always follow. But she's funny." And then his brown skin turns the faintest shade of pink and his eyes look like there are stars in them. Not bad, I think. He just likes her for who she is. And Sports Day happened more than two weeks back. As first crushes go, that's a long enough time, at least for a six-year-old.

I'm enjoying this moment when he announces: "I wish I could marry her!" Cough! Splutter!
"Marry her?"
"Yes. I like her. But I have to grow up and get a good job first," he says solemnly.

I don't know what to say. My mind goes back to the first time I saw such stars in his eyes, although that lasted around 3 days. It was the first day of school last year. I went to pick him up and he was standing in line, beaming. As we walked back to the car, he whispered. "Have you seen my teacher? She's so nice."

"Yes, she seems nice. She's pretty, too."
He didn't respond to the pretty part.
"What's her name?"
His face fell. "I didn't ask."
"Well, why don't you find out tomorrow?"
"What should I say?" he asked nervously. So I told him.

When I picked him up the next day, the first thing he said was: "Chetna. Her name is Chetna." And he was beaming from ear to ear. Oh how he loved that teacher. She liked him, too. When we met her at at PTA meeting soon after his first cryopexy last July - he'd missed 3 weeks of school - she hugged him and said: "I missed you. There was nobody to keep me on my toes." (Which was her way of saying that there was nobody else as naughty as he is! But she liked him a lot, that was obvious.)

Three months later, this wonderful teacher coming to school after she was diagnosed with a problem in her spine. He misses her terribly, often saying: "I wish my Chetna ma'am would come back. School is not fun anymore."

He doesn't like his new teacher that much and I must admit, I don't see her making an effort either. But the school year is almost ending, and I can only hope that he will get a nice teacher in the first grade.

"Mamma?" he says, jerking me back from my reverie.
"Yes, baby?"
"You and Papa were classmates too, right?"
"Yes, we were."
"That's nice," he says and closes eyes. I'm thankful he went to sleep that easily, but I lie awake for a long time after that. :-)

This is my life, and sometimes, I can't even remember what it was like before he was born. Thank you, Poppet. And yes, you can rant all you like when you feel I embarrassed you by writing all this. But hey, what are parents for? ;-)

I want to tell you so much, my son

Earlier this month, Munchkin accidentally deleted a whole set of photos from the camera, and his Coats Eye photo was among those. (See post: Coats Eye Photo)

Last night, I was downloading all the pictures from the memory card and found another photo of his which shows his Coats Eye. It was a reminder that he has to visit the doctor in exactly a month's time to see if the exudates (leakages) have been absorbed. More importantly, I am praying that there will be no fresh leakage. After all, you can do only a limited number of cryotherapy procedures.

I have been interacting on various forums and was thrilled to discover that people have actually beaten Coats with a combination of laser and cryo procedures...even when diagnosed with the condition in both eyes. It fills me with hope.

There is so much I want to say to my little soldier, but I don't know if he will understand. Maybe one day, he can read this and know what I wanted to say.
I'm sorry, my little one, that I couldn't prevent this
... that I didn't know that such a condition existed or we might have discovered it sooner
... that you had to undergo two surgeries before the age of 6 and I couldn't prevent that either
... that you may never become a fighter pilot or an astronaut, like you keep saying you want to.
... that I cannot wish away the fact that you will have to get your eyes checked frequently for the rest of your life
... that I could not do more for you

And I hope that you will not hold my helplessness against me when you are old enough to understand all of this.


Caught off-guard: Munchkin's Coats Eye. 18 January 2008

Coats Eye Photo

Around 10 days back, Munchkin and I were fooling around with the camera and one of the pictures I took shows his Coats condition: the tiger eye. The yellow area is really small compared to some of the other photos we've seen on the Internet, but it was a sad and heart-rending confirmation of his condition.

All we can do is pray. I recently read at a Coats forum that there are people out there for whom a combination of laser and cryopexy has worked and their condition has been stable for years. I pray for such healing, too. The other doctor (to whom we'd gone for just a regular eye check to see if my son needed glasses) scared us so much that I'm afraid to go back there. (See 'More Confusion') His next appointment with the retina specialist is in March. I am fervently praying for some more good news.

Something tells me he may need a round of laser to get rid of the existing leakage (exudates) but please let it not be cryo. Cryo is destructive and scarring, although it does play a major role in stopping the leakage.

Whoever reads this, please pray for my son. Thank you.

Thank you, Almighty

This morning (Monday, December 24, 2007) we took our son to the doctor for his eye check-up. I have been waiting breathlessly and simultaneously dreading the visit. It was the day we would know whether or not the second round of cryotherapy worked. The little tyke hates these visits and I don't blame him. A hyperactive 6-year-old having to to sit with his eyes closed for nearly an hour is torture. Anyway, we somehow managed that with stories and "fact-stories" and occasional pick-me-up-and-carry-me-around requests.

Then it was time for us to go in. This doctor is a rather to-the-point kind of fellow. So he carried out his examination and with the same deadpan expression, proceeded to look at each and every page of the kid's hospital record. And we waited...and waited...and waited. I was sure my heart was about to fall right out of my mouth when he finally spoke: "Well, it is stable." The best four words I've ever heard.

We then asked questions to get some more details. Turns out that there has been no fresh leakage over the past 2 months, which means the condition has "stabilized." And then the doctor said something even more heartening. "If it stays this way, we can leave it as it is. The exudates (leakage) will get absorbed over time or we can do some laser to get rid of it."

I sat there gaping at him. I know I did. I couldn't speak and I couldn't gulp.

The kid's next check-up is in March to see if it he condition remains stable. My understanding is that if the second round of cryopexy worked, then he has a good chance at beating this thing altogether. Of course, the other doctor's words still haunt me: Be prepared for multiple treatments.

I am prepared, but today's results were God's doing and I thank the Almighty like I have never thanked Him before.

PS: Ever since I was around 8 years old, I've always had this "great expectation" feeling around Christmas. It's weird because we're not Christians, so the feeling that the day was somehow significant seemed baseless. Over the years, I learned to put it down to the whole commercialization of expecting a gift and doing up a Christmas tree and whatnot. (Score one for the Americanization of the world, etc.) Today, that void was filled...and how! It was the best Christmas gift I could have ever hoped for. So once again, thank you, God.

(Originally posted on Monday, December 24, 2007 on an earlier blog)

Why my son can probably never be a fighter pilot

My son has a rare eye condition: Coats Disease. It affects 1 in 350,000 people. Some abnormal blood vessels in the back of the retina begin to leak and the leakage begins to collect in the retina. Eventually, if the case goes undetected, when the leakage starts to collect in the center of the retina, it affects the vision, prompts all kinds of other painful symptoms which I don’t want to think about. Worst case scenario: the retina detaches, can’t be surgically reattached, and results in blindness in that eye. Sometimes, the eye has to be removed and replaced with a cosmetic eye.

Now for the good news. The doctors tell us it’s been detected early (stage 2A) so the chances of arresting the progress of this condition are “very good.” They did the first round of laser – to blast off the existing leakage – and some cryopexy to freeze the abnormal blood vessels. A doctor from whom we took a second opinion told us to be prepared for multiple sessions of cryopexy. So we were. No, change that. We knew he may need multiple sessions. But we weren’t prepared for it.

Another talk with the second-opinion doctor reveled that they can do this kind of treatment only around 4 times.

That’s because every time you send that sub-zero beam into the eye, you freeze (read: destroy) that portion. So while cryopexy is just about the only thing that can control this disease, it is also slightly destructive in nature.

Oh, and he will probably never be able to go up in a roller coaster because those kind of fluctuating pressures can worsen the condition. What am I going to tell him when he insists he’s old enough to try out the more adventurous rides in an amusement park? He can probably never become a pilot like he wants to. Yes, all boys want to become pilots at some point in their life, but having the choice taken away from you sucks, right? And this is a kid who can spend eons acting out dogfights with two of his toy fighter jets!

Anyway, once the cryopexy is done, you need to wait for a month or two before you know if the treatment is working. But before that, you need to get through the procedure, done under general anesthesia. That’s always scary. Everyone in my family has been under GA at least twice. I don’t remember ever being so worried before. Is it because I’m older, or because this is my son we’re talking about?

The second time he went in for the treatment, I waited outside and mouthed prayers incessantly. I was a nervous wreck already – partly from worrying myself sick, and partly from not being able to display my emotions. I was ashamed of myself, because unlike most of my countrymen, I hadn’t been able to make a vow with a deity. I should have done what I had commonly heard: heal my son and I will bring him to your shrine within a year. Why hadn’t I been able to do it? The thought had crossed my mind a hundred times over. Was I weak, or just plain practical and scared? What if I made a vow but was unable to fulfill it? Besides, my family has never been into these things. Our faith is private and personal. Was I being tested? Was my faith not strong enough? Should I have been telling the Almighty: “I know you will heal him,” instead of saying, “please heal my son”?

Coats Disease can sometimes inexplicably reverse itself. A miracle, in other words. Should I have been praying for a miracle? Sworn to change my religion, like many others had, if my son was cured? Or done something equally intense? Was I too selfish? Was I not taking this thing seriously enough?

I was still saying my prayers when a woman with a cute one-year-old baby came up to me and asked me which member of my family had been taken inside the operation theater. I’d seen her when we’d come in. She was bottle-feeding her baby. The child looked like her left eye was smaller than her right eye. I told the woman briefly what had happened. She told me her story in turn.

Poppet came out on a stretcher this time, with an oxygen mask and drips. And his eye was bandaged. He wasn’t crying and howling in a semi-conscious state like the last time, but this was scary too.

I later saw the woman and her husband talking to the doctor. She looked worried, he was asking a lot of questions. The doctor, a reticent fellow, was answering their questions with the same expression he always wore: deadpan. So it was difficult to make out much. After a little while, I went over to ask them. This time, she kept quiet. Her husband did all the talking. “They are saying they could not reconnect the nerve,” he said. A nerve had been disconnected? “They tried, but they could not reattach it. So now they are saying nothing can be done.”

What did that mean? Would she be blind in that eye? “They are saying there is no vision in that eye already,” he said. “They are saying it will become smaller and smaller and they will replace with it with a cosmetic eye. But I will take her somewhere else also. This is very serious.”

And then it hit me. Their daughter was already blind in one eye. And they couldn’t accept that. He was talking about taking her to other places. She was very quiet.

I wanted to run away from there.

My son's procedure had gone well. Of course, we’d know only by December whether it had worked. And if it hadn’t, he still had two more shots at a cure. Was this curable? I’d never heard or read about a cure to this condition? Was it simply ‘managing’ the condition? Would Poppet need to worry about this, or ‘manage’ it for the rest of this life? That suddenly seemed preferable to what I had just heard. For one second, it seemed like some bizarre way of destiny preparing me for what was to come.

And I couldn’t deal with it. Not then, not that day.

So I ran away. Very selfish, very petty, and very cheap of me. But that’s what I did. I mouthed some nonsense about not losing hope, feigning misunderstanding of what they had just told me. And then I fled. Back to my son demanding to know when we could go home.

“Just as soon as you can keep some food down,” I told him. “Twenty minutes after that, we can leave.”

An hour later, after he had managed to keep down two idlis for 15 minutes and shown no signs of throwing up, we left for home.

Post Script:

The little brat has been chosen to MC a part of his school's annual day celebrations (Kindergarten section). Last year, he was in a dance which he really enjoyed. A few days before the show, he came down with high fever. Although he recovered, he was really weak on the day of the show and couldn't take part. His teacher later told me his partner, Chinmayee (who tied a rakhi on his wrist that year) cried her heart out. This year, he told his teacher he didn't want to be in the dance. So they've made him an MC. His check-up is due the Monday before the show. From what we know, whatever the doctor tells us that day should not affect his performance on the day of the show. I continue to pray...

(This was originally written in November on an earlier blog, now deleted.)