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.
Showing posts with label laser. Show all posts
Showing posts with label laser. Show all posts
Saturday, March 27, 2010
Sunday, January 11, 2009
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.
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.
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.
Tuesday, February 26, 2008
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
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
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