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.

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.

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.