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.
Sunday, January 11, 2009
Cryo postponed, tantrums extended
Munchkin's cryo treatment got postponed last Wednesday. This time, he was aware that he hadn't eaten anything since Tuesday's dinner (late, at 10 pm) and worse, he wasn't the first in line for his procedure at the hospital. There were three babies - all under 2 years old - ahead of him.
It was tough on him: the little tyke kept saying he was hungry every half hour. Only my mother had the fortitude to keep him occupied for over two hours. At noon, a doctor from the OR said that an emergency implant surgery on an infant was taking far longer than expected. The earliest the OR would be free was 2 pm, but it could be longer. Munchkin's doctor too came out and said it might be better to reschedule the procedure for Thursday since the little fellow must be hungry.
So that's what we did - fed Munchkin and left the hospital.
After a quick lunch of McDonalds - coz Poppet wanted the toy that came with it, this time the hippo from Madagascar 2 - wherein the drive thru messed up our order (again!), I trudged to work to tackle work handed by a rather arrogant individual (long story, and not meant for this blog).
We normally get Poppet a small toy after his procedure - and this time, although the cryo was cancelled, he was adamant that he wanted a toy. He wanted mum to take him out in the afternoon - this is on a hot and sunny day, with no transportation available since we'd taken the car - so she called me and made me promise I or his father would get him something on our way back from the office. I spent a few harrowing hours at work while DH managed to pick up something for the kid at a toy store. We were late getting back and while speaking to my mother on the phone, Poppet came on the line. He asked his dad what he'd got for him and his father happened to say it was something small.
When we reached home (mum's home - in the same building) I found mum crying. Poppet was slightly insolent and I pretty much guessed what had happened. Ever since he'd learnt that the toy was 'something small' he'd taken off on my mother, saying she was "responsible" for the inadequate size of the toy. Under normal circumstances, mum would have given him a quiet dressing down (don't ask, she has her ways, and they involve no screaming and shouting, unlike yours truly). But she was already falling to pieces over his condition and him being hungry for more than half a day and having to go through the whole process again the following day. So she just broke down.
I felt it was inexcusable the way he'd behaved. He said he was sorry after he saw that his 'small' toy was actually a gorgeous racing car. But I couldn't get over his behavior so he got a stern lecture from me.
Later that night, I cried for a while after he'd gone to sleep, trying to tell myself that what I'd done was right. My head said it was, but my heart wouldn't forgive me. I still feel terrible about it - like a lesser being or something for having done what I did
It was tough on him: the little tyke kept saying he was hungry every half hour. Only my mother had the fortitude to keep him occupied for over two hours. At noon, a doctor from the OR said that an emergency implant surgery on an infant was taking far longer than expected. The earliest the OR would be free was 2 pm, but it could be longer. Munchkin's doctor too came out and said it might be better to reschedule the procedure for Thursday since the little fellow must be hungry.
So that's what we did - fed Munchkin and left the hospital.
After a quick lunch of McDonalds - coz Poppet wanted the toy that came with it, this time the hippo from Madagascar 2 - wherein the drive thru messed up our order (again!), I trudged to work to tackle work handed by a rather arrogant individual (long story, and not meant for this blog).
We normally get Poppet a small toy after his procedure - and this time, although the cryo was cancelled, he was adamant that he wanted a toy. He wanted mum to take him out in the afternoon - this is on a hot and sunny day, with no transportation available since we'd taken the car - so she called me and made me promise I or his father would get him something on our way back from the office. I spent a few harrowing hours at work while DH managed to pick up something for the kid at a toy store. We were late getting back and while speaking to my mother on the phone, Poppet came on the line. He asked his dad what he'd got for him and his father happened to say it was something small.
When we reached home (mum's home - in the same building) I found mum crying. Poppet was slightly insolent and I pretty much guessed what had happened. Ever since he'd learnt that the toy was 'something small' he'd taken off on my mother, saying she was "responsible" for the inadequate size of the toy. Under normal circumstances, mum would have given him a quiet dressing down (don't ask, she has her ways, and they involve no screaming and shouting, unlike yours truly). But she was already falling to pieces over his condition and him being hungry for more than half a day and having to go through the whole process again the following day. So she just broke down.
I felt it was inexcusable the way he'd behaved. He said he was sorry after he saw that his 'small' toy was actually a gorgeous racing car. But I couldn't get over his behavior so he got a stern lecture from me.
Later that night, I cried for a while after he'd gone to sleep, trying to tell myself that what I'd done was right. My head said it was, but my heart wouldn't forgive me. I still feel terrible about it - like a lesser being or something for having done what I did
Tuesday, January 6, 2009
Tonight, just a prayer
This morning, I was...well, not quite functioning. Now, just an hour before bed, I'm strangely calm. Tomorrow morning, we take Munchkin to the hospital for his third round of cryo - there's not too many you can do because cryo is destructive by nature.
If you read this, please pray that my son's treatment is successful and the leakage never, NEVER recurs.
Tonight, all I have is my son - the best thing that ever happened to me, the reason I'm alive. And I will keep the faith.
If you read this, please pray that my son's treatment is successful and the leakage never, NEVER recurs.
Tonight, all I have is my son - the best thing that ever happened to me, the reason I'm alive. And I will keep the faith.
Sunday, January 4, 2009
Am falling apart...
I honestly don't know what's happening to me. I take one look at my son and I feel like dissolving into tears. I'm terrified about the on Wednesday - as I've said over and over, the anesthesia is terrifying. I've myself dealt with it without trouble twice and this is going to the Shreyaan's third time, but somehow, this time I'm coming apart at the seams.
A little while back, he was giving me some lip and I had to get stern with him - and I was actually glad, because it meant a few moments of not feeling like my insides were melting. Somebody once told me I handle stress very well. If only they saw me now.
A little while back, he was giving me some lip and I had to get stern with him - and I was actually glad, because it meant a few moments of not feeling like my insides were melting. Somebody once told me I handle stress very well. If only they saw me now.
Friday, December 26, 2008
Off to gramps'
Tomorrow we leave for my son's first visit to his grandparents' house. We haven't visited my in-laws in years for a variety of reasons (some history and some serious lack of leave). But tomorrow, we're headed there for a quick, week-long trip. There are two shrines to visit and we'll hopefully spend the rest of our time hanging around the house and not being fed to bursting point by overenthusiastic relatives who believe that a way to demonstrate love is to stuff them full of food they don't like. :-P
We've scheduled Poppet's cryo for the 7th of Jan. And this time, I'm more terrified than ever about the anesthesia (I know, I know, I've mentioned it nearly every post related to my son's condition! I know I have to stop, but...)
Time for some praying - for good health and some calm.
We've scheduled Poppet's cryo for the 7th of Jan. And this time, I'm more terrified than ever about the anesthesia (I know, I know, I've mentioned it nearly every post related to my son's condition! I know I have to stop, but...)
Time for some praying - for good health and some calm.
Tuesday, December 23, 2008
Sonny & Me on Sunday shopping
On Sunday, Munchkin and I went shopping. First stop, the toy shop for a remote-controlled car. We got one that had it's own pit-stop 'home' and four extra tyres. The little tyke is thrilled.
Then we stopped at the optician to pick up a pair of nearly wraparound sunglasses for the post-cryo trip next Saturday.
Then the shoe store for a pair of floaters for the growing boy.
And then the stationery store: two notebooks ("Mom, promise you won't cover them - they're for rough notes - and brown is soooo boring!"), a tube of Fevicol, colored paper ("The colors are cool, Mom." - and I'm a sucker for paper, especially when it's colored.)
Oh yes, we managed to have some soda (yea, yea, I know I should be more "responsible" but well...) and popcorn. And then we were home and Munchkin zoomed the car around to his heart's content. All in all, a cool Sunday. :-)
Then we stopped at the optician to pick up a pair of nearly wraparound sunglasses for the post-cryo trip next Saturday.
Then the shoe store for a pair of floaters for the growing boy.
And then the stationery store: two notebooks ("Mom, promise you won't cover them - they're for rough notes - and brown is soooo boring!"), a tube of Fevicol, colored paper ("The colors are cool, Mom." - and I'm a sucker for paper, especially when it's colored.)
Oh yes, we managed to have some soda (yea, yea, I know I should be more "responsible" but well...) and popcorn. And then we were home and Munchkin zoomed the car around to his heart's content. All in all, a cool Sunday. :-)
Sunday, December 21, 2008
More treatment needed
The leakage has started again. We found out at the hospital yesterday. Munchkin was really irritated about keeping his eyes closed for them to be dilated. And somehow, ever since we left home, I was expecting bad news. We've had three exams in the past year, all of which indicated that my son's Coats was stable. I had wondered whether our good fortune would sustain.
This time, the exudates (old leakage) had reduced, but other blood vessels had swollen and have begun leaking. Amazing, how quickly things can change in four months. The good news is that these vessels are still a decent distance away from the macula, so by God's grace his vision remains unaffected.
I was in such a tizzy after having the Fundus photos taken that I agreed to leave the hospital without thinking. Poppet's father wanted to delay it until after we come back from his parents place - which would make it another two weeks. By that time, Poppet's school would have started again. I agreed at the time but something didn't seem right....anyway, now I'm hoping to fix procedure for next Wednesday. We leave for his grandparents' place on Saturday.
The whole general anesthesia thing still gives me the jitters. And there's so much in flux at the office. I have a hundred loose ends to tie up before I can go away without worrying about being fired while I'm away. :-P
More after we've organized everything. Hang in there, Munchkin. I have faith this will all work out.
This time, the exudates (old leakage) had reduced, but other blood vessels had swollen and have begun leaking. Amazing, how quickly things can change in four months. The good news is that these vessels are still a decent distance away from the macula, so by God's grace his vision remains unaffected.
I was in such a tizzy after having the Fundus photos taken that I agreed to leave the hospital without thinking. Poppet's father wanted to delay it until after we come back from his parents place - which would make it another two weeks. By that time, Poppet's school would have started again. I agreed at the time but something didn't seem right....anyway, now I'm hoping to fix procedure for next Wednesday. We leave for his grandparents' place on Saturday.
The whole general anesthesia thing still gives me the jitters. And there's so much in flux at the office. I have a hundred loose ends to tie up before I can go away without worrying about being fired while I'm away. :-P
More after we've organized everything. Hang in there, Munchkin. I have faith this will all work out.
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