My nine-year-old son is the center of my universe. This is the story of his childhood as it unfolds. Please read the first post, "Why I started this blog," to know more.

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...

Sunday, July 25, 2010

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.

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.

Thursday, May 20, 2010


I'm stopping the posts on this blog after last night. A lot happened that shouldn't have. But it did. I will post updates on Munchkin's Coats condition. And I will reply to anyone who wants to know more about Coats and cryo and laser and vitrectomy. (He's recovering quite well, thank God.)

The centre of my universe - the raison d'etre for this blog - well, let's just say the axis has shifted, leaving me with wounds that are raw and bleeding. It's a long story, but we're probably just on living through chapter 2. Some day, when I have the strength, I will restart the non-Coats part of this blog. Until then ...

Wednesday, May 19, 2010

Swelling scare

It's the one thing I was dreading...the most natural instinctive action first thing in the morning is to rub your eye - especially one that's had ointment kohl-ed into it the previous night. For all my hawkeyed monitoring, I couldn't grab the kiddo's hand in time to stop a solitary rub of his eyelid (yes, the one that had been operated on). An hour later, the eyelid was swollen and I was panicking.

His doctor was going to be in surgery today, but his assistant asked us to bring the kid along by 2 pm anyway. When we go there, we learnt that the surgeon was going to be delayed because two unexpected cases had come in. We finally met another surgeon, who said - bless him - that the eye was 90% healed and that swelling could be expected. It was likely a result of that one rub in the morning, but that was nothing to worry about. Phew!

The doctor who saw him also allowed him an hour of TV every day, in bursts of 30 minutes each. But that wasn't enough for the kid - he was still fixated on getting a Lego set.

It's well nigh impossible to find a choice of Lego sets in Bangalore. And Lego doesn't ship to India so you can't buy the stuff online either. Most sets are imported and therefore really expensive. He has an old one of mine he plays with, courtesy my mother who has the of preserving stuff like new. And we've managed to buy a few smaller vehicle kits (an ambulance and a race car) every now and then without breaking the bank. But now he's been wanting another set which is way beyond any reasonable price for a set of plastic pieces, no matter how legendary they are. Don't get me wrong - I'm a great fan of Lego - but this is just getting to be a bit much. The hospital visit meant I got into the office only by 3.30pm and left by 8.30pm. By that time, all the shops were downing shutters. I thought I'd convinced him on the phone about the delay to tomorrow, but even as I'm writing this, he's sulking - and looking quite like he's going to throw a tantrum - about having to wait 23 hours for a Lego set, instead of the 6-7 hours he'd imagined. Talk about wanting instant gratification... (to add to which my cold and cough is now so bad that my voice is cracked and the pain is just about bearable with a couple of painkillers!)

Anyway, I'm just glad the swelling was nothing to be scared of. Now to go manage the tantrum before it turns into a full blown epic battle.... sigh.

Tuesday, May 18, 2010

Life in the aftermath of a vitrectomy

Okay, so maybe I'm being a bit melodramatic here, what with the over-the-top post title. But really, it does seem that way. Let me take a step back, though and continue from where I left off.

Last Tuesday night, a couple of hours after he went to sleep, Munchkin woke up and started throwing up every hour or so. From around 1.30 am to around 6.45 am. There was nothing to do but reschedule the surgery. So I called up the hospital around 7.30 am and told them about it. They're really well organized and an hour later, the surgeon's assistant - the chap who manages all the appointments and other scheduling - called up to check on what had happened.

Our pediatrician prescribed a syrup which seemed to work miracles and the little fellow was fine all through Wednesday and Thursday. I can only hazard that he was Which is more than I can say for myself. Walking the kind of tightrope I do isn't easy and any little shove - such as pre-surgery jitters compounded by a stressful, sleepless night - is enough send me hurtling into an abyss. So while we had managed to reschedule the vitrectomy for Friday, I was down with fever, nausea, giddiness, and extreme anxiety by Wednesday night. But I digress...

On Friday morning, we were at the hospital a little after 8 and even though he wasn't the youngest there that day, he was taken in first, around 9.15 am. The next hour was probably the longest of my life, and when the surgeon came out to tell us that the procedure had gone well, I felt like I'd begun to breathe again. And when the little fellow back - moaning and delirious as usual - I was ready to both laugh and cry.

The next few hours were peaceful - the anesthetist seemed to have sedated him before sending him back and we were spared the extreme theatrics of April. By 3pm, he was sipping juice and did so through to 5.30pm, insisting he wasn't hungry (the nurse said that was natural because he had been given drips). In between, he also told us that the chief anethesiologist had given him a bit of a scolding because he'd been howling that he didn't want the surgery. The anesthesiologist knows him because he's been going back for procedures since 2007.

The surgeon let us go home that evening, even though he'd said earlier that we might have had to stay at the hospital overnight. He's a slightly reticent fellow, so when he said: "He (my son) cried quite a bit before the surgery," I knew he must have created one heck of a racket.

We had to go back very early the next morning to get his bandage removed. That's when I discovered that they'd trimmed his lashes. (They'd grow back, the surgeon assured us.) There was no swelling, though. He also showed us the single suture they'd put in - it looked like a pinhead. Even though the vitrectomy would normally have been suture-less, they'd put one in because the 'sclera' in children is rather thin. I can't exactly explain that here, but based on whatever I've read, it made sense.

Munchkin was sleep through most of Saturday as well, but come Sunday, he was back to his recent, bratty self. (Long story, that, and not one worth telling here.) In the meantime, I managed to get myself a bad head cold and on Monday morning, I got myself a crick in my side. And I have to go in to work for a few hours each day.

The challenges - and I don't use that word lightly - are many to implement. No television, no reading, no bending forward, or sleeping on your back (the last two are really important because otherwise, the air bubble they've inserted will touch the lense and could induce a cataract - and that's really not something we want!), no playing outside, no going outside at all, in fact ... not easy to impose on a hyperactive eight-year-old.

More updates in a few days ...

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.

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

Saturday, March 27, 2010

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.

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.