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.

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.