Thursday, March 27, 2008

A dark day in our life in the year 2006

Warning: This is a long health related post.

Just wanted to share a chapter of my life with all of you.Yes...The day after Thanks Giving when all the people are busy shopping and still enjoying the holidays we had a very dark day during our 2006 ThanksGiving. This is b'coz Kavin was diagonized with something called the KAWASAKI disease. Funny name uh? Yes, we thought so too when the ER doctor told us the name not knowing the seriousness behind it.Inshort, this an acquired heart disease that affects young childeren who are less than 5 years of age and rarely above 5. You can read more about it here and here.Kavin's story goes like this.

On 17th November 2006 he woke up normal just like any other day. He had his flu shot appointment and so we went to his pediatrician around 11 am. By 12pm we met 'B' in a restaurant and had lunch. Kavin dosen't eat anyway, so we kept him busy with some crayons. He was a little fussy though, so we packed our lunches half way through and I drove him back home.

Within minutes of reaching home, he threw up and started to shiver. I panicked. Then I gave him tylenol and put him to bed. I found that he developed fever. At that time, I thought it was a side effect of the flu shot. But as the clocked ticked away, his temperature kept on rising and rising. By 5pm he was burning and had a temperature of 104 degress. I didn't wanted to keep him in home any longer. So, we took him to the emergency by 6pm. All through the way he kept throwing up and his head was drooping down. Finally we got to see the doctor only by 10pm. (You know how the ER's function in US). They asked us to give him the same tylenol and motrin alternatively and sent us home.

The next day we met Kavin's pediatrician but he didn't find anything either. All through the day, his temperature would be 102 deg under the effect of motrin. When the medicine effect wares off ,it would go back to 104 . Back again in the evening his temperature shot up high and we rushed back to the ER.

After a long wait, we got to see that day's doctor. I was really not at all happy with the way he reacted to our concerns. He spent exactly a minute listening to our complaints, didn't examine Kavin (not even looked at him) and scoffed at me for telling my concerns as he thought I was exaggerating.

Again we went home to continue the tylenol and Motrin.Again we made a trip to the Pediatrician the next day. On this day, Kavin developed cracks on his lips and his toungue was coated with white substance and his eyes were blood-red. Still, his pediatrician said that it is a viral fever as his eyes were red. He also prescribed an eye drops and Nystatin for the toungue. Again we went home with no answers.

Fourth day also no improvements. Already, Kavin has feeding difficulties. He dosen't drink milk or juice also. It was so tough to watch him live with water alone. All long we knew something was wrong but we were helpless. My parents are doctors in India and my sis is doing her final year medicine. My dad became suspicious about Kavin's condition on this day. He prescribed some medicines too. But I was afraid to give it as I would have to answer Kavin's pediatrician if something went wrong.

Fifth day also continued with high fevers of 103. Kavin was humming weakly a lullaby that I used to sing to him daily. He tried to look into my eyes and said "boo boo". Oh My God! It was the worst moment. My hubby and me burst into tears and cried out aloud with Kavin in my lap. My Dad asked us to do a blood test. So, we went to the pediatrician to ask for it. He disagreed on that and he suggested to take a x-ray alone to check if it was Pnemonia. We went to the lab and got the result as negative. Again we went to see the doctor with the lab results. My hubby asked for the blood test again but the doctor said that he is very sure that it is a viral fever and that it takes 10 days to go away.

Day 6. A day before ThanksGiving. We cancelled our dinner program in our friends place and stayed home hoping to see some improvements today atleast. But nothing much changed. Back again we went to the ER and asked them to admit Kavin as we afraid to keep him home. But they didn't so as he was not dehydrated. I did tell them that he was drinking only water and very little pedialite (just 4 ounces a day). We had to give him through a medicine despenser as he dosen't like pedialite. Still, we were kiced like a ball back to our house.

Day7. It was Thanksgiving and while the world was happy celebrating it we were still in the dark not knowing what would happen next. My dad was angry with me as I did not follow his medicines. But he warned me that this was terribly wrong and a blood test was a must. He suggested to give a steroid that is banned in US but still used in India. I was scared to try it. Didn't want to complicate anything. So, I just told my dad that I gave the medicine but I didn't. No improvements. It's been 6 days since Kavin walked.

Day 8. We woke up after sleepless nights. Again my dad insisted on the blood tests and we talked to the Pediatrician and he basically washed off his hands. He said that he has done all that he knows and said that we could go to the ER again if we want and take a blood test for our satisfaction as our pediatrician's office was closed on that day. I was frustrated with the ER at this point. I didn't want to go there at all. But my hubby said that we go there again to do the blood tests atleast. Back again we went waited for 3 hours. The ER was packed with people as it was a holiday season.

In the waiting room, when my hubby took Kavin to the restroom he noticed that he was walking wobbly. He hardly took 2 steps then he sat down. B's eyes were watery. I consoled him and measured Kavin's temperature. This time the meter showed no reading. Just "HIGH". I was scared to death. I went to the reception and yelled at them for taking such a long time. Then the nurse came and checked Kavin. They took him in right away. Within half an hour we saw the doctor and told him the entire story. He was so patient and listened to us carefully. He then did a blood test and came back with the results that it could be "KAWASAKI".

After this the treatment started in a jet speed. kavin was admitted on the spot and was getting ready to be seen by the main doctor. 'B' rushed home to get a few things for our hospital stay. Kavin was given drips and had so many wires on his body. After 20 mins, his body started to shiver badly. I tried to hug him but his body was shaking so hard that his bed was also shaking. The nurse rushed in and changed the doses and he setteled down slowly. He was give IVIG (immunoglobin -an antibodies extract from human blood).

Day 9. Kavin woke up with no fever. His eyes came back to normal. He smiled and responded to us. He became aware that he was sick and that he was in the hospital to recover. We had a sigh of relief that didn't last for long. The doctor came in and gave us a sheet about this disease. We were shocked to read thru that. Then an echo was performed on Kavin and it was found that his coronary artery has enlarged and that he was in risk level 2. Phone calls were going back and forth to India and my dad was trying to find out the underlying complications and try to to do the best possible.

Day 10. We were released from the hospital and was asked to do a follow-up visit after a week with a cardiologist. Kavi was on baby aspirin for one full month. We met the cardiologist a week later and discussed the possible problems. He said that we have to wait for 1 full month to see how Kavin's body is recovering in the post kawasaki phase. His platelettes counts was more than double of what it had to be. The doctor also warned that if the platelet count continue to be this high ,he is in a risk for cancer.

This was too much for us. We walked in dark hoping to find some light at the end. This incident really changed us a lot. We started to appreciate Kavin more and his other difficulties did not matter anymore. We just wanted him to be alive atleast. In the end, after one full month of waiting time, the doctor did his echo and said that he has miraculously escaped and that his coronary artery has come back to normal and that he has crossed the danger line. Kavin is still kept on watch for the next 3 to 5 years . But we hope he will do fine in the coming years.

From my experiences, I strongly feel that our family would not have undergone this only if the doctors were more responsible in the first place. All that the ER doctors want us to do is spend some time in the patient’s room and hope that they can pass the patient off to the next doctor coming on shift or keep the patient alive for them to be seen by their regular doctor the next day. Anyway, it's we as parents who have to fight for our children. Always trust your gut feeling and struggle as much as you can.

Keep an eye for these Symptoms:
1. persistent fever that is higher than 104 degrees Fahrenheit (39 degrees Celsius), and lasts for at least 5 days.
2.severe redness in the eyes
3.a rash on the child's stomach, chest, and genitals, dry, cracked lips
5.swollen tongue with a white coating and big red bumpssore, irritated throat
6.swollen palms of the hands and soles of the feet with a purple-red color
7.swollen lymph nodes
8. Peeling of skin under the nails (For kavin it happened after his relase from the hospital

If you see any of these symptoms in your child, Please Please do not hesitate to do a blood test and check for Platelet count. Don't worry if the doctors turn deaf to your words. You got to be persistant. In our case, we could have escaped this if the kawasaki disease would have been detected atleast two days before.I'm sorry for a long one. Hope I didn't bore you. This is just to keep you all aware about this killer disease.

Coming to an end, he is a pic of my son taken recently. You can see what food blogging has done to him. He has seen me taking pics of food many times and one day I saw him doing this. So I grabbed my camera quick and took a shot. He even got a little tikes kitchen set for ThanksGiving!

This ThanksGiving was a good one. We went to a big church were our friends invited us for a lunch. There was a huge crowd from different countries. People from different places sang their National anthem on stage. And guess who sang our India's national anthem?It was KAVIN.

He sang the full song song so clearly and won a huge applause. Too bad that I didn't take a camera. My friend said that the church would have taken it and if he gets it he would send it to me. So, I'm still waiting for that. Anyhow, we were so proud of him. Exactly one year has made a huge difference in our lives.

Thank you for stopping by and taking the time to read this. I really appreciate it.


Hema said...

That was a heart robbing story.. I literally cried.. I can understand what you would have gone through.. I can still remember my son(10 months) taken to the Emergency Room.. Lot of blood work, scan and Urine testing... He was crying looking at me so that I would hug him.. I can never forget that look!! Good that Kevin has recovered now.. Do not worry.. Everything will be alright.. God never lets us down

Saka said...

Thanks for sharing ur experience.. so that many people will now come to know this KAWASAKI bcas of u...Wishing him a speedy and complete recovery...

rajathi said...

Hi, I was browsing through the web looking for some recipes and I bumped into yours. It was a very disturbing story though with a miracle end in it. Its true that we should always trust our gut feeling, especially when its our children, our hearts will know more than any doctors out there. I do blame the ER, they are useless. I wish him a blessed future with such a loving parents.

Anonymous said...

Hi1 i have always loved your blogs and have tried lots of dishes...i just dont respond or comment...

but after reading about kevin...i had too! my son is 10 months old...
i have already taken him to ER twice... i can understand ur pain..

take care and i hope u start blogging soon!