Eye exam coming up

It's been nearly a year and a half since Munchkin's last two surgeries (a cryo and laser in April 2010 and a vitrectomy in May 2010). We have an eye exam coming up towards the end of the month. And already, the dread is starting to build. Why? Because we've never gone so long without surgery ever since his condition was diagnosed back in July 2007. He's nine now (tenth birthday coming up in Jan) and the doctor has said that there is a possibility of the disease stabilizing as a child grows older. Coats invariably tends to throw up 'side-effects' like cataracts (that's what the vitrectomy was for - a thin film had formed over his retina, creating 'macular pucker').
And he positively hates the thought of going through another round of laser - he says he hates having to be hungry for so long, gets scared of 'falling asleep' and hates the smell of the anesthesia. What's worse, he surfaces from the anesthesia rather badly, usually kicking and screaming, literally. When he was little, I would scoop him up and try to calm him down. Last year, I realized I could no longer do this.
His mid-term vacation begins on the 24th. We have a mom-and-son holiday lined up at the beach for 4 days. The 'practical' person that I am, I figure he can still have the laser and get back to school in time even after the holiday. I've lost count of the number of holidays I've planned for us and then not made reservations because we had an eye exam coming up and what if he needed cryo and laser... well, no more. I want nothing more than for this disease to have stabilized and get another four-month breather. Please pray for my little munchkin!

Late update on April 2010 eye exam

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?

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...

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.

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.

Pause

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 ...

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.

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 ...

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.

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

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.

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.

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.

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.

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.

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.