Tuesday, December 13, 2011

A BIT OF THIS & A BIT OF THAT

                             STORIES OF HOPE


I am actually going to talk about other people besides Kokila this time, but I will start with Kokila.

KOKILA
As most of you know, Kokila was discharged from hospital on November 11, 2011.  After much opposition, followed by negotiation, the landlord finally agreed to allow Kokila to stay at the school for some time in order that infection be kept to a minimum, or not at all.  Kokila only stayed at the school for about one week, but I'm sure it helped to have a very clean environment for that period of time.
Kokila is now at home and doing quite well.  The only problem has been some infection in one of her ears.  Today she was having the second day surgery to drain the infection.  Hopefully this will be all she needs.

At the end of November Kokila and Kanchen her mother spoke at the Annual concert which was attended by members of almost all the families from both schools.  Kanchen spoke from the heart.  She thanked everyone for saving her daughter - the early intervention by Tania and the staff to get Kokila into a good burn hospital, and the incredible world wide support from the larger One! family to pay for the services Kokila required.  She acknowledges that her daughter probably would not have survived without this help. Apparently there wasn't a dry eye in the room. 

Kokila is attending school sporadically and has started back into her studies.
However, the challenge now is the "princess" complex she has developed as a result of all the attention she has received over the last two months.  She does a fair amount of whining and is being a little oppositional.

In order for the skin grafts to be as flexible as possible and give her as much mobility as possible, Kokila needs to do exercises.  We are sure the exercises cause some discomfort and perhaps even some pain.  But they are necessary and she is not cooperating with the routine.  The trick now will be coming up with some realistic reward regime for her. 

Her progress has been remarkable, and I'm sure this latest "bump in the road" will be navigated successfully.

SANKRISH
This is a little boy who did not have a proper anus.  The condition was causing him a great deal of discomfort, and his nutrition was also greatly affected.
Sankrish had his surgery in the spring and is doing very well.  Everything is working as it should and his health has improved.
The surgery was done for free; the medicines were covered by One!

ANKITA
Ankita is a little girl about 10 years of age who had a hole in her heart.
The family knew about the hole, but apparently the operation can not be done too young.
By January of 2011 Ankita's asthma was getting progressively worse, and by March she could only walk about 15 minutes before she was in pain. The doctors started doing the tests and talking about doing the surgery, but told the mother the costs would be in the thousands of dollars.  
This was just after Sankrish had his operation, so Ankita's mother had some idea of were to go and what to do. Ankita's mother knew One! had helped with the costs for Sankrish, and that we probably wouldn't be able to pay very much at this time.
Ankita's mother is a single mother, but we are incredibly proud of what she accomplished for her daughter.
Mother had to start with getting an affidavit regarding the birth of Ankita (no birth certificate). She had to prove her family was below the poverty/ration level in order for the costs of the operation to be waived.  She went to about 10 different offices over a period of 25 days.  In early May the approval was given for the operation and Ankita was admitted to hospital (emergency by this point) on May 13, 2011.
Mom had to arrange for 5 blood donations before the surgery could be done.
Finally on July 17, 2011 Ankita had her surgery.
One week after the surgery Ankita was back at school.  She is fine and there are no complications.  The costs were minimal, a few hundred dollars instead of a few thousand dollars.
Congratulations to Ankita and her mother.


 














SOHAIL
This is a little boy who was born with some sort of deficiency in his leg which causes poor balance, and one leg seemingly shorter than the other. His system needs to be built up before any surgery can be done.  Vitamins are being provided, and of course good meals each day.

RAMESH
We have discovered that Ramesh has Epilepsy.
On July 21 he had what we think was his third 'attack', but this time it was a full on epileptic seizure which left him unconscious.
He is now on medication and the condition should be able to be monitored.

AORTI ( or DeeBee for short)
This little baby - about three months of age was 1.9 Kilos when she was weighed by the One! staff a couple of weeks age.
One of the mothers at our school brought the baby to the school as she was very concerned and thought she would die. Everyone agreed that death was probably imminent.  We have had this experience before, and one such baby was one of the impetus moments for the founding of One! International. 
The baby's mother sits on the side of the road selling/begging.  She did not seem to understand that her baby was dying and needed to get nourishment. ("It's okay, she just sleeps a lot.") The older siblings are also malnourished and sickly.
During the last couple of weeks, One! staff pick the baby up on their way to school.  She is being fed and loved - carried by someone at most times.
Apparently Tania knows that DeeBee's urinary track is working fine.
DeeBee is starting to thrive.  Isn't it amazing what a little food and love will do.
She is now 3 Kilos; she is alert; she is looking around; she is starting to respond to people.  WOW



One! International is saving lives.
One! International is giving children longer lives.
One! International is helping families to care for their children as they want to.

Saturday, November 19, 2011

KOKILA IS HOME - ALMOST

I am sure all of you have been waiting for this update from Tania.


You will be pleased to see how well "our girl" is looking and doing.

Once again - please forgive me for sounding like a broken record - THANK YOU

We have raised almost $12,000 Can for Kokila's treatment and hospital stay.

The total expenditures to date have been close to $16,000.

We will be changing the www.CanadaHelps.org fund designation from " Kokila Emergency Fund" to "Emergency Medical Relief Fund". Our plan will be to use any money donated to this new fund to cover the shortfall for Kokila's expenses, and subsequently for any life threatening medical emergencies for One! clients.

I truly do not know what we would have been able to provide for Kokila without the tremendous support from all of our One! friends.

Marilyn


Nov 11, 2011 Tania (mom#2) Kokila, Kanchen (mom#1), and Doctor before leaving the hospital.

--------------------------------------------------------------------------------------------

Tuesday, November 1, 2011 to Thursday, November 3, 2011 (Day 31)

No news to report on these days. Kokila’s mood was steadily better and better and the second grafting went well.

~~~

Friday, November 4, 2011 (Day 32)

Another big day as we were to find out how the second set of skin grafting set. I had a quick visit in the morning, in which I witnessed the doctor screaming at an intern who ‘followed him around’ and was ‘trying to look hard-working’ rather than just being hard-working. He reminded me of myself – I have had that exact same fight before.

He stole a few minutes to talk to me about Kokila's current situation and reaffirmed that he was still planning to discharge her on Monday but was worried about whether she would be ready or not to go home to the slums. It was nice to hear that he understood Kokila’s home life and that it factored into his decisions.

I left before the dressing was done, but he promised to message when it was over and tell me what percent the grafting set.

He forgot to message, but we hoped that no news was good news.

~~~

Saturday, November 5, 2011 (Day 33)

I had a great little visit with Kokila on Saturday. She was in a great mood and was shocked when I told her that she would likely be going home early next week. The smile on her face made everything worthwhile.

~~~

Monday, November 7, 2011 (Day 35)

Kokila`s dressings were changed again on Monday. As it was Id (Muslim holiday), I didn't`t go to the hospital, so the doctor called. He was happy about how Kokila was doing except for the back of her neck which didn't`t take 100% and a pressure ulcer which had formed on the back of her head from lying down and moving minimally for the month. He asked if there was a safe and clean place for her to go. I said that I could probably arrange something, but only for a week. He thought that would be enough and so we discussed discharge on Wednesday.

~~~

Wednesday, November 9, 2011 (Day 37)

Juniper (Canadian Nurse) and I went to see Kokila and talk to the doctor about the pending discharge. He was still worried about the pressure ulcer on the back of her skull but said that if he drained it and covered it with a flap then it would be ok for her to go somewhere clean. He misunderstood our conversation on the phone and thought that I didn't have a clean place for her to stay. He thought that I asked for her to stay in the hospital for one more week. When I told we could arrange a place for a week, he was rather excited. He said he would do what he needed to do on Thursday and then Kokila could be discharged on Friday. We were all very excited.

Once again, Kanchan gave a couple Rupees to a beggar lady on the way home. Life never ceases to amaze.

Vinita asked permission from the school landlord for Kokila to stay – not that permission was needed, but out of respect. He wasn't in, but his wife seemed to think that it wouldn't be a problem.

She was wrong. He came storming into the school fifteen minutes before we were to leave and spoke with Vinita. He said “No! There are too many risks involved.” Vinita tried to find out what the ‘risks’ were. He said “No-one could tell, things could happen from any direction.” Vinita then tried to alleviate all risks that she could think of: Kokila would not try to claim the place as her own (his biggest fear), Kokila was not in a condition that she would die, there would not be many people around visiting – we would ensure it. No matter what she said, he was scared of the imaginary ‘risks’ – that he couldn't put into words. At this point he tried to give her money for a hotel or an apartment for Kokila for the week – a whopping Rs. 1000. Vinita was very confused by this and called me in. It didn't take long to realize that he wasn't going to change his mind and that the only card I had to play was sadness (slightly contrived but 90% real). He continued to talk to Vinita and then finally said to me that I shouldn't be upset. I said that I was not angry, but sad. He was treating it like a business relationship which is not something I could understand. I always treated it like a family relationship and over the last 8 years worked hard at honouring the relationship. As we have helped him over the years, we have only ever asked for a couple favours and that he couldn't help us in this dire situation made me sad.

He tried to convince me that I shouldn't be sad and once again offered money. I repeated that I could be disappointed, and that it wouldn't affect his decision. We would respect his decision and follow it. He said that he would ask around the area and try to get us a place to keep Kokila.

Roadblock.

Through the night, the only answer I could find was the volunteer apartment, but that didn't seem fair on them.

~~~

Thursday, November 10, 2011 (Day 38)

On the walk to school in the morning, volunteers Juniper and Honey were more than ready to adjust for a week to give Kokila a safe home to stay in. Above and beyond – volunteers are amazing.

We prepared for Kokila’s arrival by emptying out the Step 9 room for her to be able to sit in while she was at the school during the day. We bought her some nightgowns and were generally a flitter with little things as we thought of them. On the way home, we passed the Landlord. Vinita asked him if he managed to find a place to which he answered “It is difficult”. Yeah, no sh*&$! He then offered for Josh and I to live in his house (a spare room he had on the roof) so that Kokila and Kanchan could stay in my house. Yeah, that makes sense, how bizarre. We kindly said no thank you and that we would keep Kokila with us and walked away.

As I was about to tell the rest of the volunteers of the unfortunate news, the landlord called. He said “I guess you can keep your patient at the school.” I kept it short and said thank you and that I would be at the school in the morning to discuss it.

The volunteers were happy but immediately took on the role of giving Kokila support over the weekend. They really are amazing.

A quick message exchanged with the doctor, his procedure of covering the pressure ulcer went well and yes, he would start the discharge procedures in the morning and asked us to arrive at 12.

~~~

Friday, November 11, 2011 (Day 39)

A hectic morning started with a quick exchange with the landlord. He said, “Please let this be the last time.” I agreed and said thank you without any emotion. Who knows what consequence this will have on the relationship and the agreement renewal when that time comes – oh well, not to be dealt with now.

We started by bleaching the Step 9 room and making sure it was rat, ant and dust free. Then we continued on to the TV room and all the rooms in between. As the gang was mobilized in doing this, Juniper, Vikas and I left for the hospital – and of course we met with crazy traffic. Isn't that always the way! In the end, it didn't matter as they were still calculating the final bill. I took a deep breath before I looked at it and my fears were confirmed, it was higher than initially estimated. $14,400.

On my way up from paying the bill, the doctor was waiting for me in the lobby of the Burn Unit. He took me in to see the lady that gave up her bed for Kokila. He was proud of Kokila and was telling the older lady that the little girl has recovered and is already going home, “why aren't you?” The lady was too scared of falling and refused to start walking. Kokila recovered very fast and the doctor praised her hard work and our support. He repeated his awe at the work that we do and the extent of support that we give. Giving financial support is easy, but being with the people day in and day out is really what matters. On his own he said that he wanted to come to the school and to make sure that I kept in touch.

I then went in to get Kokila who was more than ready! She was standing and waiting. The nurse had last minute things to do, so they gave Kokila lunch. When all the papers were signed, Kokila gave the nurses her thank you card for them and was simply going to give the one for the doctor to them. The nurses immediately called the doctor to the unit again. He was clearly touched by her card. We took a picture: Kokila, Kanchan, the doctor and I. We were all feeling very proud and relieved that her recovery was taking the next step.

The ride home in the taxi wasn't easy for Kokila, it was clear that she felt every bump in the road – of which there are many. She made it home without crying though and was trying to be really strong.

When we walked into the school, Rekha, Santosh and Kokila`s brother Pappy were there. Their first reaction was unfortunately to just stare. Though Kokila is looking great as compared to how she was, it is still shocking to see her for the first time. With a push, they welcomed her and started talking. Soon news got out and Kokila`s brothers and sisters as well as some of her school friends arrived. Everyone had the same reaction and it was hard for Kokila. Luckily, brother Hritick (5) immediately jumped up and down and smiling and laughing and saying “Koki! Koki!”. He didn't seem to see her frailty or her wounds, or her scars – he only saw his big sister and was overjoyed to have her home.

Stragglers kept trying to come in at which point we sent everyone away. Kokila was clearly overwhelmed and the trauma of the day – both physically and emotionally had taken its toll. By the time we got rid of the crowd, Kokila was sobbing uncontrollably and writhing in pain. She tried to sleep on her own but only settled when she laid on Juniper’s lap. She slept for 45 minutes. When she awoke, she was no longer crying and enjoyed a peaceful afternoon in front of the TV. She wasn't smiling, but she seemed to settle as time went on. Parvati didn’t leave Kokila’s side. She was glad to have her big sister back but didn't like it that her big sister was in pain. She winced every time Kokila made a sound. Parvati has been so used to people taking care of her over the years, it was nice to see her take care of Kokila – petting her arm and doing whatever else she could.

Juniper’s main concern was to figure out a toilet for Kokila. Her legs weren't strong enough to squat. She managed a makeshift one with a bucket and some boxes – all was well.

39 days – and I felt every hour of it. What a relief to have her close to home and safe. Everyone should pat themselves on the back for doing their part in saving Kokila’s life.

Monday, November 7, 2011

THANK YOU THANK YOU THANK YOU THANK YOU

Tania will be doing another update to give you the details of the second plastic surgery operation and the move home for Kokila.  She will be going home this week.

 I didn't want to wait to say the following:


Monday, October 31, 2011

GOOD, GOOD, GOOD NEWS FROM MUMBAI

 I promised last blog to talk about other good news stories regarding some of our other children in Mumbai, but I know that many of you have been waiting anxiously for news about Kokila's progress.
 The news is very good.

 We are blessed with the love and support of so many people in India, in Canada, and all around the world.   Below is the uncensored, full report just received this morning from Tania.
                                   ----------------------------------------



Kokila Update


******************************************************
Monday, October 24, 2011 (Day 21)

Vinita visited and once again was not able to see the doctor. With Diwali approaching, there are a lot of emergency burn patients that he is dealing with. She had a great little visit with Kokila though. Kokila still wasn’t up to talking much and so they didn’t broach any important subjects, but each visit gets easier for Vinita and so hopefully next week they will talk about the day the accident happened.

There was no operation scheduled.

Tuesday, October 25, 2011 (Day 22)

With Sunil’s exam done (he thinks he has a chance at passing), I was once again free and really looked forward to seeing Kokila. I fed her breakfast after a bit of a fight and she ate quite well (an idli, dahl and chai). She is still not eating well and the nurses are worried that it will postpone her discharge. The Doctor was at an all-day surgery at another hospital but did message to say that the last grafting surgery would be done on Monday the 31st.

Kokila was still not in a mood to talk, but at least she wasn’t screaming or moaning. She was just quiet – probably trying to assimilate everything that has happened over the month.

Kanchan travelled home with me and was quiet herself. She is really worn out. I was surprised when a little girl carrying her baby brother was begging on the train that Kanchan pulled out two Rupees and gave it to her. I haven’t quite figured it out yet. She doesn’t have money herself but gave it away. She used to beg herself so appreciates how hard it is? My initial reaction was love for Kanchan and tears welled up in my eyes.

Wednesday, October 26, 2011 (Day 23)

Diwali!

At 7pm, I was surprised with a call from the doctor. He wanted to inform me about Kokila’s progress and what the next couple weeks would entail. He is not able to do grafting on both sides of the body at the same time. The major grafting was the front which went well and which was healing well so far. The back is minor with only one shoulder and the back of her neck to do. He wasn’t at all worried about it and expected it to go smoothly on Monday. He also said that she could be discharged as early as the Monday after the surgery, the 7th of November! What great news for Diwali! I couldn’t believe that the doctor took time out if his celebrations to call and inform about a patient.

While the volunteers and I were celebrating Diwali at Vinita’s place, Kanchan called and was with Kokila and everyone was happy.

Thursday, October 27, 2011 (Day 24)

Kokila greeted me with a smile. That was a long time coming! She was glad to see me and when I showed her the set of pens and coloring book that I brought for her, she said “Happy Diwali! I love you!”

That itself made the whole month worth it.

We sat for a long time together, me picking out her lice, her telling me about the shows she watched on TV. It was nice, really nice.

She ate her dahl without too much coercion but complained a lot about the hospital food. I promised her I would bring her some more chicken.

What a nice day.

Friday, October 28, 2011 (Day 25)

Volunteer Honey wanted to see Kokila again. As she visited, I had the unfortunate job of paying the bill – which has now crossed $9000 – and there are still at least ten days and one operation to go. Oh boy. Kokila was a little confused at first because she had just woken up, but then she had a great visit with Honey. She ate more than half a cheese sandwich and some chai. Honey thought it strange to feed her and scratch her lice head, but was really glad that she had visited. They coloured together and Kokila made a card for Honey that said “I miss you, I love you, I thank you”.

Saturday, October 29, 2011 (Day 26)

I had another great visit with Kokila. I was supposed to meet the doctor, but he had to rush to another Diwali firecracker burn victim last minute. He had come early in the morning to change her dressings. He sent a message saying that the grafts done in the first surgery were 100% successful and that the surgery would go ahead as scheduled on Monday.

Thank heavens he did a new dressing, because the smell was unbearable over the last couple days – I guess the healing and infection coming out. When I got there, she was looking, and smelling!, clean and wonderful.

Kokila and I watched “The Lion, The Witch and The Wardrobe”. She had just watched the Hindi dubbed version the day before, so even though it was in English she was telling me everything that was happening. She said “I need to remember my English and practice.”

She ate well: two pieces of chicken, a little potato and half of her dahl. By the end she was complaining about her full tummy.

Despite the pain of the dressings in the morning, she was in a great mood. Her only complaint was her head being itchy – and rightfully so. There is no other way of describing it than disgusting. There was lice and eggs everywhere and carcasses of dead lice to add to it.

The nurse had to give her medicine, so I had to leave but she let me go with a big smile – the first time all month.

Monday, October 31, 2011 (Day 28)

The day couldn’t have gone smoother. When I reached the hospital, the doctor was in the elevator. He had another operation before Kokila’s but that today would be the final procedure. He said that she was doing really well.

I then saw Kokila very briefly. She opened her eyes to tell me that she was glad they shaved her hair off (they had called me the previous day to ask for permission at which I said YES!). Her and I said together that her hair would quickly grow back. I told her to go back to sleep, she said ok and within seconds was snoring again. Its better she sleeps as much as she can before the operation anyway.

I wasn’t sure whether I would be able to talk to the doctor in length, but before he started his first operation (a little boy that blew himself up with a firecracker) he took the time to talk to me. The first skin grafts were taken from her right thigh and calf, and today’s grafts were to be taken from her left thigh. Not too much was needed as it was a MUCH smaller area. When he did the dressing the other day, he yelled at Kokila a lot trying to get her to be stronger. In the end, he was happy that he didn’t have to give her any anaesthesia. He threatened her with sending her back to Sion hospital – at which point she instantly was quiet. He was hoping to give the minimum today as well and thought that she would be just fine. He reassured me by saying that he realized where she was returning home to and even though he thought that she would likely be ready for discharge in a week, he wouldn’t take any chances of infection and would make sure that the risk was 0. He also explained how he is minimizing the bills as much as he can. There is no doubt that he has gone above and beyond the basic expectations. Hopefully he follows through and comes in and talks to the children.

Kanchan and I then had chai together before Kokila’s operation started. She was overjoyed when I told her that discharge could be as early as Monday. She had no idea and was shaking with glee. We then talked about the whole month – from her breaking down at the entrance to Sion to her having to bathe Kokila to today. We both said that had she not moved, she would have died.

As I write, Kokila is in the middle of her second grafting and the story nears its conclusion. The love and support has been beyond incredible. We are all honoured to be a part of this, greater than us, One! family.
 

Saturday, October 22, 2011

Good News from Khar Re: Kokila

Below please find the most recent update on Kokila covering the period of Thursday October 13, 2011 to Saturday October 22, 2012. The update was done by Tania and is copied in it's entirety.


To all those who have supported Kokila through donations, prayers, and good thoughts,thank you for all the love and support extended to Kokila, her family, Tania and the staff of One! in India.

The bottom line, as of today, is that Kokila is doing very well, and I am sure it is due in large part to all of you.

It looks very promising that Kokila - who has endeared herself to so many people over the years - will be able to celebrate Holi as she did in this picture.


__________________________________________________________________

Thursday, October 13, 2011 (Day 10)

I arrived early at 8:45am worried that I would miss the doctor again. Of course I stood around waiting for an hour as he didn’t arrive until almost 10am. The first words that came out of his mouth shocked me “I am going to do the blood transfusion today.” I was ready for it to be happening soon, but not quite that soon. As it turns out, her Haemoglobin had dropped to 8.2 yesterday and he was expecting 8 or 7.8 today. Rather than wait until it was an emergency, he decided to do the Transfusion during the day when there were all the professionals needed in case it went wrong. I asked the time frame and he said within an hour.

I then went up to see Kokila who was once again in a horrible mood. She was having trouble with her neck which was hurting no matter how she kept it. In talking with the doctor later, I found out that is the area that he is most worried about. She is not allowed to use a pillow as it will crush the skin together and cause problems. Kokila refused to eat again and was force fed. I wasn’t able to spend much time with her, and in the half hour I did, she didn’t smile once and didn’t even want to talk to anyone on the phone.

The nurses pulled me aside to sign the release form for the Blood Transfusion which (I hope you will all understand) I refused to do. Kanchan had left the hospital to work in the Thursday market so the family had a little pocket money, and so for the first time in 10 days, Kokila was without a family member. Vinita was at the charity registration office and so it was really difficult to communicate the needs. Rakesh answered his phone and said that both his parents were on their way and would reach in 15 minutes. I decided to meet them downstairs as they would be worried. After half an hour they didn’t show up. We got back on the phones to try to contact them again. It turns out that Rakesh had lied again and they were all still in Khar. They finally left Khar at 11:30am, arriving at the hospital at 12:45pm. The whole time I was just waiting and worried and waiting and worried some more. In the meantime, the doctor decided to retest Kokila’s blood in case there was a match or to take the closest match available. At 1pm, the doctor was in the burn unit and was trying to reassure me again that it would work out. He already had a dialysis machine in the room and everyone was aware of the situation and knew what steps needed to be taken. Unfortunately he then went on and on about how they could only do as much as they could and the rest was up to God and that sometimes people who were barely burned didn’t survive and others who were more than 50% did and how of course they had to do all that they knew how to do and that god wouldn’t do that but that the rest we couldn’t predict and that really no one ever knows just how it is going to go but that god is great and that he would determine and………. I phased out about halfway through and actually ended up feeling more worried than reassured. Oh boy… With a brief explanation of the procedure, Kanchan put her thumbprint as a signature and we were off – being told that the procedure would start within a couple of hours.

I then had the wonderful job of explaining the risk as simply but clearly as possible to Kanchan, Bhola and Rakesh. Everyone has different blood and Kokila’s doesn’t have a match and they have to give the closest even though it isn’t perfect and her body might not like it and then there could be problems but the doctors will be ready. And more than likely it will be ok, but just in case you HAVE TO BE HERE.

Completely spent, I left for a couple hours break with all intention to return. On my way home in the train with the wind blowing against my face I realized that I was in no state to return.

I arrived at Khar school at 2:45pm and collapsed in a chair. Vinita brought me water and took care of me and we planned for Honey (always ready for anything) and Vikas (just as ready to do anything) going to go to the hospital just in case anything was needed.

As Honey and Vikas were arriving at the hospital at 4:30pm, I got a text message from the doctor asking for us to get a medicine from outside immediately. “Lipidem” would increase the immunity against infection – a boost needed during the transfusion. The transfusion hadn’t started because her fever was too high. He sent the drug distributor’s phone number and Vinita immediately called and tried to arrange for it. The distributor was not ready to give the medicine without a prescription. Vikas and Honey then tried to get in touch with the nurses (that in itself taking nearly half an hour) and then convince them to call the doctor for the prescription. This was somehow very difficult and so I called the doctor directly who told me to tell the distributor to call him directly. What a mess. The distributor refused to call the doctor but finally said that he would give the medicine but would not give a receipt. For f(*&$#@’S sake. Did it really have to be that difficult! Finally at 5:40pm Vikas went to get the urgent medicine.

While Vikas was gone, Kanchan was dragging Honey all over the hospital – burn unit to visitor lounge to reception and back around again. She was anxious, worried and fidgety. She kept hugging Honey and saying thank you and being simply appreciative and wonderful. Honey felt that she didn’t deserve the thanks but was glad to see the love in Kanchan’s eyes and the commitment to her daughter. Honey was able to spend half an hour with Kokila who was still in no mood to laugh or smile. She was telling Honey how everyone wanted her to come home soon and that they were sad. Honey told her that they were worried and that everyone loves her very much. Kokila asked where I was with a sad face. Honey explained that I was very tired, Kokila said it was ok. Kokila asked if I would be there in the morning. Even though Vinita is planning to go, Honey said yes to reassure her. Vinita convinced herself that she needed to deal with the situation and saw a picture of Kokila on Wednesday. It was hard for her, but being the strong woman that she is, she is determined to meet Kokila and face her own fears tomorrow.

Vikas arrived with the medicine at 6:30pm. The nurses curtly took it and said that the fever had reduced and they were about to start the transfusion. She also told everyone to go away except one person – that she would call if anything was needed. This is likely not completely true since they were supposed to call in the afternoon for an update and didn’t. Still, it was already a long day for everyone and waiting seems to be endless and the majority of the time futile. Honey and Vikas returned leaving Kanchan with her lovely daughter at the hospital.

It is currently 8:30pm and the transfusion has been running for an hour and a half of the scheduled 4 hours without call or alarm. No news is good news. Let’s hope the phone doesn’t ring through the whole night…

Thanks for all of your love and support and warm thoughts, Tania


Friday, October 14, 2011 (Day 11)

Vinita arrived at the hospital at 9:00am. She waited in the lobby for a bit, then finally took a deep breath and headed up to see Kokila for the first time (aside from a cellphone picture). She says afterward that it wasn’t as hard as she thought it would be. The wounds are really bad, but she could tell that she has recovered a lot and she felt that Kokila was going to be ok. Kokila wasn’t in a good mood again. Vinita asked her a lot of questions but all she could get was a slight nod as agreement or grimace as a no.

Vinita spoke to the nurses and found out that the blood transfusions were no cause for concern. Kokila’s body was accepting the new blood and there was no spike of fever. They only gave one bottle of blood on Thursday and were going to give another bottle that day.

Vinita spent almost three hours and was really glad that she did. She was feeling really detached from Kokila and the accident and now felt that she could be a part of her recovery.

The evening transfusion went well again. The doctor called at 10:35pm to tell me that the transfusions were over. He sounded just as relieved as I was.

Saturday, October 15, 2011 (Day 12)

When I arrived at 11am, I went straight in to see Kokila who was sleeping peacefully. At 11:15am, the nurses needed to change Kokila’s dressings so I was kicked out. Being in the Burn Unit at this time is very difficult as you can hear her screaming of pain. I went down to the lobby and read a bit of my book (“The Girl With the Dragon Tattoo” for anyone who is interested!) but didn’t get that far by the time Kanchan saw me. We had chai together and played with her granddaughter Tejal (Manda had come to the hospital with her to visit Kanchan). Manda has been extremely supportive of Kanchan through the whole ordeal.

At noon, Kanchan and I travelled to the Burn Unit. The dressings were still being changed, so I waited inside, and Kanchan waited out. When finally they were done, Kokila was not in any mood at all. She was clearly in a lot of pain and very upset from the procedure. She was downright angry and didn’t want to listen to anything or anyone. I tried to distract her with TV but she hit the remote away. I showed her cards from the kids, no smile. I read her all the emails everyone had sent, no smile. By the time the doctor came an hour later, she was calm again. I put the TV on and left. I guess the positive is that she must be feeling better or she wouldn’t have the energy to be angry?

The doctor was glad to see me as he feels he can really explain the situation, most of his patients’ family do not understand even in the simplest of terms. After the blood transfusion, the medicines that were being given for the infection were no longer sensitive (no longer working). He had to give her a stronger anti-biotic which always has other side-effects and is harder on the body for recovery. He wasn’t worried about it, but was disappointed that she couldn’t continue on the ones she was on.

He was pondering getting started on the surgeries as early as Wednesday the 19th. It would depend on how Kokila reacted to the new medicines and the amount of infection she had in her body.

He went around telling all of the nurses and ward boys and other patients’ families what I do. As I have said before, not needed, but I would be lying if I said it didn’t feel nice.

I had a meeting with a young man who was …well…there is really no way of saying it nicely…trying to steal away some of the children at the school. But that’s a story for another day. It wasn’t the most pleasant meeting though – that much was clear.

Then Vijay Sir, Sunil, Ashok, Reshma, Honey, Chetana Didi and I tried to get as many exams done as possible so that the week wouldn’t be so hard. We ended up staying until 9pm…oh boy…

Sunday, October 16, 2011 (Day 13)

A great day for Kokila because aside from the daily change of dressings, there were no other procedures she had to endure. Kanchan was really excited to see laughing and even playing a bit with a coin. Throwing it and catching it and smiling.

Monday, October 17, 2011 (Day 14) Two weeks – Almost safe

With full intention of heading to the hospital after printing a couple of exams for that day, the plan kept changing as the day went on. I started on exams at 8:15am and didn’t leave the computer until 7:30pm. The good news was that there was little that had to be done for the rest of the week.

Kanchan had called at 11:30am asking where I was. Without hesitation she said not to worry and not to go to the hospital because Kokila was doing really well. She later came in to the school at 3:00pm and was beaming with excitement at Kokila’s progress. Apparently the doctor also reassured her that Kokila was going to be fine and that the operations would start on Wednesday.

Tuesday, October 18, 2011 (Day 15)

I arrived at the hospital at 9:00am and the nurse was waking Kokila up as I walked in. She was grumpy and didn’t want to eat, but I decided to take none of her mood and fed her anyway. By the end, she had an idli, a bowl of dahl and some chai. This was more than she had since the very first time I fed her eight days ago. She is still refusing to eat most of the time; so they are still feeding her through the tube in her nose – which Kokila still hates. Kokila was insisting that she should go home. I tried to tell her nicely for half an hour but finally had to play a bit of a harder line by saying that first you have to look pretty again and then you can go home – you don’t want people to see you like this. She didn’t press the issue after that. By 10:00am she was in a much better mood so we started calling people. She smiled quite a bit and couldn’t believe how many people told her to get better fast and come home and that they missed her. She kept telling everyone that she was coming home Friday (which she wasn’t) and with a gentle reminder she then added “…or next Friday” (still likely not true, but at least closer to the truth). This didn’t just happen once, but with every person. While she was talking on the phone, the nurse took a blood sample to check for the level of infection still present.

It was great to see Kokila after 3 days. Her face is improving very quickly, and they no longer have her full arms wrapped. The arms have huge pink patches, but they are no longer wet with pus but dry and healing. Her face is starting to look beautiful again. Her cheeks are healing really well and her lips are looking much, much better also. I could see the infection back around her jaw (yellow pus), but all in all the improvement was obvious. I am worried about her ear and neck, but all other areas seem to be well on their way to healing.

I left the hospital at 12:00pm without meeting the doctor, he got stuck at another hospital. The nurse said that if the blood test results showed a reasonable level of infection, then the operation would be booked for the morning.

For the first time in exam week history, all exams were prepared and sent for Xerox on Tuesday at 6:15pm! Unbelievable. The kids always enjoy exams and this year is no exception.

Wednesday, October 19, 2011 (Day 16)

As I had a One! International Board Meeting Wednesday morning (which the internet cut out on anyway), Vinita decided to go to the hospital. When she got there at 9:00am, the nurse was preparing Kokila for the operation (removal of the dead skin, “skin debrilement” or so I was told). Vinita was not able to meet anyone, but kept Kanchan company and calm throughout the morning. Finally at 12:00pm they got the good news that the operation went really well. They peeked in on Kokila but of course she was sleeping. Vinita said that she looked just as burnt, but ‘cleaner’ with all the black removed and the infection cleaned off.

Vinita spoke to the doctor who was all smiles about the operation’s success and the speed of recovery of Kokila. He was so happy with the operation that he didn’t want to wait until Monday the 24th as was his original plan but instead to start the skin grafting on Friday. He thanked Vinita for her support. All good news!

When Vinita spoke to the nurses, they were complaining that Kokila was still refusing to eat her meals. Vinita conveyed this message to Kanchan who promised to force her to eat.

After the operation, Kokila was given two more bottles of blood to keep her haemoglobin count up. The blood transfusions once again went on without any complication.

Thursday, October 20, 2011 (Day 17)

Wednesday turned out to be a crazy day at Khar (they usually happen once a month or so) which means that we can’t afford to leave the school without Vinita or myself present. Nothing too horrible – just a mixture of random events. Since Vinita was doing her health exams in Nallasopara that meant that I was not able to go to the hospital. Kanchan had reassured us the day before that it wasn’t a problem and that she would stay all day and take care of Kokila. At 4pm, Kanchan showed up, leaving her husband Bhola at the hospital. She was all smiles and said that when she left the hospital, Kokila was smiling and laughing and watching TV and that we shouldn’t worry about anything. She met the doctor and he also said that everything was going to be fine. He said the skin grafting was scheduled for the next day.

Friday, October 21, 2011 (Day 18)

With only three days left until Sunil’s last Grade 10 exam (math), Vijay Sir took another turn at the hospital. He arrived at 8:30am and the nurses were already getting Kokila ready for the operation. Kanchan was excited and glad to have Vijay there with her. They have really gotten to know each other through this ordeal and spend a lot of time laughing. The operation started at 9:30am.

At 10:00am, four volunteers (Honey-US, Luanna-England, Taryn-Canada and Elin-Sweden) showed up to give blood. As Kokila had been given four bottles of blood so far, we were responsible to find four donors to replace them. Honey and Luanna were able to give, but unfortunately Taryn and Elin were not. Apparently the Blood Bank staff were extremely confused by the gang of foreigners all from different countries, all arriving in India at different times, all leaving India at different times, but all wanting to donate blood for a little slum girl. The volunteers enjoyed the spectacle they had unknowingly created. We are still trying to find two more people that are above 50kg (most of our staff are not) to donate blood. The pressure isn’t as great now that we have given two.

Finally at 12:30pm, Vijay and Kanchan were called to say that the operation was over. Vijay waited around for over an hour to meet the doctor who was in a hurry when he finally met him. He was pleasant though and just reassured Vijay that the operation went perfectly and that there would be another skin grafting on Monday.

Kanchan stayed with Kokila all day.

Saturday, October 22, 2011 (Day 18)

Vinita decided to visit Kokila today. She went in the afternoon and unfortunately Kokila had just fallen asleep after lunch. Once again she was not able to have a proper visit. She couldn’t see any of the grafting (neck and chest) as it was all bandaged up, but Kokila looked very clean and in three days she could see that a lot of healing happened. Kanchan was telling Vinita how proud she was because she was able to make Kokila eat all of her meals and that now Kokila was eating without coercion.

The doctor was not in the hospital today, but in talking with nurses, Vinita was reassured that everything was going really well and that Kokila was recovering quicker than normal.

Kanchan had not heard anything about the operation on Monday and so we are not sure at this point as to whether it is or is not. Vinita will be there first thing Monday morning to find out. Tomorrow is a day of rest for all involved… Except for Sunil and I, one last day of cramming before he finally passes his exam on Monday. He has been telling everyone that he HAS to pass, so hopefully he is predicting the future.

___________________________________________________________
___________________________________________________________

Next Blog will focus on some other GOOD NEWS stories from Mumbai.


Thursday, October 13, 2011

SAD NEWS FROM KHAR




On October 4, 2011 we had a very sad occurrence in Mumbai with one of our original girls. 14 year old Kokila was cooking and the propane stove exploded. She has received massive burns all over her body and is in a very dire state.

The story of Kokila is copied below. Tania updates the story as often as she can.

-------------------------------------------------------------------------------
Tuesday, October 4, 2011 (Day 1)


Message (Approximately 11pm): Julie received an urgent phone call from Tania with some devastating news.

One of the schools young working students, Kokila was cooking and the propane stove exploded. She has received massive burns all over her body and is in a very dire state. Tania et al have taken Kokila to all of the local hospitals and everyone is refusing to help this beautiful young girl. They have been waiting for over six hours to get some help, her life, literally is hanging by a thread.

Update1 (Approximately 12pm): Tania is extremely appreciative of everyone's concern - here is the latest update as of 5 mins ago. Kokila is now getting treatment, however not in a proper burn unit. Tania has to decide whether it is good to move her or not. The only burn center is over an hour's drive away from the hospital they are in. It is a difficult decision as they are not sure she Kokila will be able to make the move.

Tania will keep us posted.

Update2 (Approximately 12:30pm): Tania has advised that the incident has now become a police case and she fears that the process will be even slower now.

Update3 (Approximately 1:30am): Tania sent photos of where Kokila is being looked after, and we are sure that everyone will agree we need to move her as soon as possible. In her current state however, she will not survive the move. Kokila is only 14 yrs young and a very special young girl, well loved and liked.

Update4 (Approximately 3am):

Kokila is resting and in stable condition in the burn unit of the hospital. The plan moving forward is in 2-3 days that she will be stable enough to move to the national burn unit, admittance fee alone is $1,300. We can confirm that this vibrant 14yr old has suffered 50-60% burns over her little body.

Wednesday, October 5, 2011 (Day 2)

Kokila slept through the night and was taken for a bath (cleansing of the wounds) early morning.

Kanchan (Her mom) says that she was able to walk and stand on her own. She was chatty and coherent. At one point Kanchan got teary eyed and Kokila told her not to cry that she would be ok.

Vinita and Vijay Sir spent the morning and early afternoon with Kanchan who really loved the support and seemed to get stronger through it.

A bunch of the older children from the school went to see her at visiting hours but were not allowed in, it was good for Kanchan though to have people around.

Vijay Sir returned to the hospital around 5 and got the medicine needed and did some other running around. He was really worried as he saw Kokila briefly when he dropped off some medicine, "The swelling wasn't going down".

I arrived at 8 and immediately went up to see Kokila. Though only Kanchan is allowed to see her, being white has few advantages in this country and this is one of them. I walked right in and spent half an hour watching her sleep peacefully. Her face looks more than twice as bad as it looked yesterday. The swelling that was below her eyes yesterday was all the way up to her hairline today. Her eyes were only slits. She can no longer see.

However, when talking to the doctors, they ensured that where there was little to no chance yesterday, she had a 50% chance today.

I was not only able to talk to the intern that was the same one that was admitting her yesterday, but the main doctor in the unit. He was very pleasant to talk to and spent at least 15-20 minutes with me. I asked how many more days before she was out of danger. At first he said that he couldn't tell, but then gave the impression of at least 5 days more to a week. I asked what he thought about moving her to a private hospital. To this he was very honest in saying that the medical treatment and testing that she would receive would be the same in both places. On his own he stated that the hygiene, cleanliness and quality of care would be worlds different though. He definitely understood moving her and seemed to breathe a bit of relief at hearing it. When asked when she could move, he said that as long as the ambulance was well equipped then she could move today. He even gave me his phone number and said he would call if there were any changes. But... no news is good news.

Tomorrow is Dassera - the final day of the Navrati festival. The streets will be ridiculous and crowds everywhere. We have decided that tomorrow is not a good idea and that we will move her first thing Friday morning. He has suggested Bombay Hospital downtown. Vinita (with someone helping her) will secure a bed there in the morning while Vijay and I do all that's necessary at her current hospital.

Though we are still not out of the woods, with every hour that goes by, the situation gets a little less dire. We are now 32 hours in.

Let's see what tomorrow brings,

Thursday, October 6, 2011 (Day 3)

According to Kokila's mother Kanchan, the morning went well without too much trouble. Kanchan bathed her and the doctor did her dressings. While putting on the burn cream, Kanchan noticed that he missed a few spots. He wasn't very happy with her mentioning it.

Brother Rakesh was supposed to spend the night and wait until Vijay Sir arrived at 8:30am. However, he left in the middle of the night and didn't even say good-bye to his mother. He was missing in action all day; we are very disappointed in him. As a result, Vijay Sir was at the hospital from 8:30am until 10:15pm. He is remarkable in his commitment and passion for our children.

Kanchan had many visitors throughout the day. Teacher Leena, a handful of school children and a couple school moms. She was really happy with all the support.

In the evening Vinita Didi arrived followed closely by myself. A funny story happened. Vinita was being kicked out because she didn't have the pass. I walked up just in time to throw the pass her way and walk right by the cops into the burn unit. They watched me go and didn't say anything. I waited there until the cops were gone and all was well. Things you can get away with when you are white. Vinita is struggling with the whole situation so it was nice to be together for quite a while that evening. She still couldn't bring herself to look at Kokila because she said 'She was so pretty'.

I spent at least half an hour with Kokila that evening. The swelling had come down in her face and she was able to open her eyes. Talking was still very difficult and beyond throwing names at me asking how people were that's all she could communicate. She was mostly nodding or disagreeing as I asked questions and told her stories. I asked her if she went a little crazy - she nodded yes. I asked her if she still was crazy - she said no. I asked her if she would do it again - she said no. She agreed that her mom is taking amazing care of her and that she worries when her mom cries. She said that she wasn't in too much pain - but that was a lie.

I had a great talk with the doctor as soon as I entered. He wanted to talk, and talk he did. He explained the ward's situation. He had 24 patients all on his own. No interns because it was Dassera (the final day of the Navratri festival). He had to dress all of them which takes between 1/2 an hour and an hour each. I think we all can do the math. He was a zombie walking. He said that Kokila was somewhat stable but really wanted to stress that we were lucky that she was steadily getting better day by day. She could just as quickly take a turn for the worse. He reminded that it would be at least two weeks until she was safe and that getting an infection was the main concern. We spoke again about changing hospitals and he understood. He said that we would need to hire a private ambulance because we would be discharging 'Against Medical Advice'. He was not at all concerned about her safety in the ambulance.

Another funny story, I had to go in one more time to call Kanchan. I asked for them to call her, the doctor said just go yourself. I started walking to her room and he suddenly stopped me, telling me to put shoes on - which everyone is supposed to take off before entering the burn unit. Confused I clarified this at which point he took me to the OP room and gave me a pair of doctor's shoes to wear. Walking in my doctor's shoes, I called Kanchan, returned the shoes and carried on my way.

Just as we were leaving for the night, a nurse walked by and asked me what department I was in. Confused, I said none. She then said that I was a doctor. I said no. She asked why I was there. I said to see a patient. With a confused look on her face, she continued on her way. All white people must be doctors in her world. We decided that if I were to walk around the hospital with a stethoscope I would gain access everywhere and probably have a bunch of interns following my every step.

Rakesh was supposed to arrive at 9pm and didn't until 10:15pm. He met a barage of yelling by many people when he arrived. People that seemed to care for and be more worried about his sister than himself.

Friday, October 7, 2011 (Day 4)

First thing in the morning, Vinita Didi and Honey (two time volunteer from America), went downtown to Bombay Hospital - a well known private hospital. We were shocked to find out that they don't have a specified burn unit and recommended Bhatia Hospital only 15 minutes away. The reception at Bhatia Hospital was easy to deal with and they quickly secured a bed in the Burn Unit for Kokila. At this point, Vijay (with Bhavesh’s help) was informed to start the discharge process at Sion Hospital. This proved more difficult then first thought as all of the doctors were in surgeries. The ambulance was called and arrived within 20 minutes. The discharge papers were signed, but an intern was still doing Kokila's dressings. We waited half an hour but then were ready to go. By 11:30am we left Sion Hospital by ambulance. With the siren blazing, very few cars moved out of the way so it still took half an hour.

While we were dealing with everything at Sion Hospital, Vinita and Honey met the Senior Burn doctor who gave them a small tour of the hospital and showed them the Burn Unit. They were very impressed with him and his facility and felt comfortable with Kokila's new home.

The ambulance arrived (at the wrong gate of course!) and so we had to wheel Kokila through the lobby. Thankfully I was in first because Vinita was standing right there. I was able to shoo her away before she saw anything. She doesn't want to ruin Kokila's beautiful face in her mind. I understand, because it is now hard for me to remember her beautiful face, I am haunted by the images of this week.

She was taken straight up to her bed in the Burn Unit ICU and within minutes, the nurses were doing their thing. They had the IV and other gadgets set up immediately. Kanchan is not good at communicating anything - let alone hospital intake forms. Good thing I was there to answer their questions. The nurses were quite confused by her - but then again, aren't we all!

Mass confusion broke outside the hospital when we realized that everyone and their dog arrived to ‘see’ Kokila – or be nosy and see where she was. For the past three days these people didn’t care but when word got out that she was being moved to a private then they all showed up. Like a creature in a zoo, they all wanted to go and meet her. This was ridiculous on many fronts – she is in ICU, she is a burn victim that can’t see anyone, her face is burned and she probably doesn’t want to show anyone. Vijay Sir tried to send them away. Vinita tried. Finally big bad Tania Didi had to come in and lay down the law and take the brunt of their anger. Of course there was no reason in their mind for me not letting them see her, I was just being a mean ogre. It’s ok, I can take it.

Honey decided that she needed to get the image of Kokila riding by on the stretcher in front of her on Tuesday (the day it happened), out of her mind and wanted to see Kokila again. Older student Sunil has a crush on Honey and everyone jokes around that he is her boyfriend. A couple days before the accident happened, Kokila said to Sunil in English “You are not her boyfriend, I am!”. They loved to laugh and joke; this has been very hard for Honey. When she saw Kokila from the door, she received a big smile. Though the image is still not good, Honey was glad that it was much better than the image that was haunting her mind.

Kanchan needed to be escorted around the hospital one more time so that she felt safe. I showed her the visitor’s lounge where she could sleep and the payphone to make calls and then we went to the Burn Unit so that I could say good-bye to Kokila. I asked her if she liked her new home; she nodded yes.

Kanchan couldn’t believe that she didn’t have to do anything anymore. In fact, she wasn’t ALLOWED to do anything. The nurses treated her well and you could see her relax a little more as each minute passed.

I then treated the five of us who invested time and energy (Vijay Sir, Bhavesh Sir, Vinita Didi, Honey and myself) to a special lunch at one of my old favourite places – The Samrat, bottomless Gujarati thali restaurant. Vijay Sir ate a week’s worth and we all just relaxed a bit knowing that Kokila was in a good place and in safe hands.

We then journeyed to school to inform the staff (both Khar and NS) and volunteers of the events of the week. It was a hard meeting, reliving it all, but important that everyone knew the truth rather than spreading rumours. Vijay was appreciated for the commitment he made to Kokila.

At 9pm, Kanchan called to say that we needed two or three people to give blood immediately. She was willing and asked us to call Rakesh. I did and planned to meet him at the station at 10:30am the next day. We also asked Bhavesh to come as a back-up and asked him not to tell Vijay Sir so that he could rest. That didn`t work! Bhavesh immediately told Vijay who immediately called Vinita and yelled at her for not involving him!

The day was finally over.

Saturday, October 8, 2011 (Day 5)

Of course Rakesh didn`t arrive when he was supposed to. The Nurses called in the morning saying that the doctor wanted to meet me at 11am, so I couldn`t wait for Rakesh endlessly. Good thing I didn`t, he didn`t show up that day at all.

Vijay and Bhavesh arrived on time of course, and brought a friend along to also give blood, just for insurance.

I had a bit of Bombay belly that day and so was embarrassingly sweaty and uncomfortable. I waited about half an hour for the doctor to take a break from a surgery he was in, but it was well worth it. He didn`t seem to notice my sweat (phew!) and he was warm straight away and exuded a genuine and caring presence. The reason he wanted me to come in was because he had to give Kokila a really expensive medicine, Albufren (or something like that!) and that if we got it from outside we would save a lot of money. It turns out that it costs around Rs. 5500 at the hospital and Rs. 3500 outside. That`s a savings of almost $50 a day. He told me not to tell anyone because he was acting against the hospital. I was to bring in the medicine, saying that we had it from before. He also said that he would do any procedures bedside rather than in the Burn Unit Operating room. This would save Rs. 15,000 per procedure – about $380. Considering she will need multiple procedures, this is quite remarkable. He was really positive about the work and care that we were doing and really wanted to help in any way he could.

He said that she was in a stable condition, but his main concern was the extensive respiratory burns that she had. He said that the physical burns on the skin could be only 1% but if there are respiratory burns that it becomes critical. Kokila has both. He gave a better than 50% chance at survival but said that we wouldn`t be out of the scary time for three weeks.

As Vijay went to get the medicine, the rest of us (myself, Kanchan, Bhavesh and friend) went to the blood bank for our donors to give. We thought that it would be quite a simple procedure as is written in the hospital rules ‘Blood is given on a replacement basis. You give blood, we provide blood.’ So started the blood bank fiasco.

They actually didn`t want us to give blood at all, they wanted us to take a vial of Kokila`s blood to a private blood bank to ask if they had a match and if they did to bring the donation of blood back to the hospital. Yes, you read that right. We were to carry a vial of blood like a set of keys or a book in the trains and taxis and streets of Mumbai. Safe. Really safe. I tried to explain why this was so ridiculous to the blood bank guy to which he said ‘Yes, I understand, but this is the way it is,’ or ‘Yes, I see that it is dangerous, but this is the way it is.’ Fed up and getting nowhere, Bhavesh and friend then proceeded to do as told – take a vial of Kokila`s blood on the train and then a taxi to another blood bank.

The reason for the chaos was that Kokila has B+ blood which the hospital has hundreds of samples of. However, there was a factor in Kokila’s blood that was reacting with all the samples. Not one sample was viable.

Bhavesh and friend gave the blood and were told that it would take an hour and a half for the testing and matching.

Meanwhile, Vijay arrived back at the hospital with the medicine. I passed security without question (once again I will stress that I am white – by this point I was in and out of the gate 15 times and hadn’t even needed to show my pass once). I gave the medicine to the nurses who were ready for it. I asked the nurses if I could get away with not coming the next day (Sunday), they took down my number and assured me that all would be fine and that if they needed me they would call. I talked to Kokila from the door and got nicely scolded by the nurse ‘either put on your mask, hair net and gown and go in - or don’t talk’. I was very happy that she wasn’t taking any chances. I then waved good-bye and left Kanchan who was getting fully changed (they don’t trust her wearing her street clothes and so she wears nurses scrubs when she is with Kokila), to spend time with her daughter.

By this point it was nearly 3pm and Bhavesh and friend should have been arriving shortly with the blood. Vijay was comfortable waiting for them and told me to go home with my Bombay Belly. Confident that they would also be resting shortly, I left.

At 7:30pm, I got a call from Vijay who was still at the hospital. The Blood Bank took 5 hours to do the testing! There wasn’t a single match. Unsure what to do, they returned to Bhatia Hospital to ask. The hospital blood bank then called the doctor who said that they would have to find some other way – somehow. Vijay, Bhavesh and friend then had to return to the private blood bank for a refund and finally headed for home, worried, at 8pm. It was supposed to be a matter of a simple blood donation.

Sunday, October 9, 2011 (Day 6)

A quiet day on all fronts, Kanchan spent all day in and out of visiting Kokila. She still is treating her like a zoo animal though and had cousins, aunts and uncles looking at her through the window. She called at 7pm worried that I was sick. I reassured her that I was fine (which I mostly was by that point – spending most of the day in an almost comatose like state). She said that Kokila was fine and when she asked for me, Kanchan told her I was sick. The doctor was not in though he was on his phone with blood banks and haematologists trying to answer some of his concerns.

Monday, October 10, 2011 (Day 7)

The morning started off quite nice. I arrived by train at 9am sharp to find Kanchan pacing around outside. We went in together and she told me all about her visitors yesterday. I tried to explain about infection and ICU rules and Kokila probably not enjoying people seeing her – but it seemed to go in one ear and out the other. I tried.

I got suited up to see Kokila and by the time I went inside the nurse was feeding her first real meal since the accident. I asked if she wanted help and she surprisingly handed it over to me. A little shocked at first, it felt nice as it went on. She had an idli (rice cake), a boiled egg, a glass of mosambi juice (sweet lime) and a glass of tea. Kokila was very proud not to have to eat through the tube in her nose. She kept telling me that she would get them to take it out. I told her that if she listened to what they said and if she ate as much as she could they just might. We then talked about the day of the accident and the school and exams (which she was determined to write when she was better) and her family and … the list goes on and on. I thought that the doctor would come soon, but in the end, he didn’t show up until 11am and so I spent nearly two hours with Kokila. I enjoyed the time and for the first time really felt that I was with my old Kokila who I’ve known for 11 years. She was talking like a chatterbox again and her eyes and her nose looked like her old beautiful self. I was able to relax a little reminded of her beauty.

Unfortunately, the day turned sour from there. The doctor started out by saying that her vital signs were looking good and that the burns themselves are looking better. However, he had two bad things to relate. The first was that Kokila arrived with an infection – likely from either the Government Hospital itself or from the wait to get into the hospital. The infection is called Pseudomonas Species and is a very common infection for burns patients. It is dangerous, but luckily she is sensitive to all the medicines for it (they are working) and therefore it will likely be manageable. The second bad news was the real kicker. Kokila’s Haemoglobin level was steadily dropping and was currently at 8.4 where normal is between 12 and 16. He said that normally they would have already given her a pint of blood but since they hadn’t found a match (B+ or O+, they were trying to find O-), they were trying to put it off and see what happens. The haematologists were also very concerned and both were discussing the side effects of a mismatched Blood Transfusion – renal failure, the need to support it with steroids which then makes the infection worse and managing that. It was very complicated and the doctor was visibly worried…which obviously didn’t have a great effect on me. He said that he would do the mismatched Transfusion if her levels fell below 8 because he felt that at that point he didn’t have a choice.

He then buttered me up by talking about the work that we do at One!. He said that he felt good about the work that he was doing (free camps here and there) until he realized the commitment that I had made. Then he felt very small about his work and knew he needed to do more. He wondered if he could possibly come in to the school and talk to the children about burns and their consequences. He also commented on all the social workers that he has seen come in with money but not the time and attention that we are giving. They come and go but don’t actually spend the time with the patients and keep track of the details. He was shocked to see me feeding Kokila and the close relationship that we have.

Not that the praise is needed, but of course it always feels nice.

Worried, I headed back to the Khar school to relate the information to just a few not to create mass confusion.

We continued exam prep someway somehow, even though it felt so unimportant…

Tuesday, October 11, 2011 (Day 8)

I arrived at the hospital at 9:00am to find Kokila in a really foul mood. She was screaming of pain in her stomach. In the hour and a half that I was there, I was only able to make her smile once when I read her card from fellow classmate, Radha, which told her that she would never fight with her ever again. All of the Khar school children made pictures and cards for her. Kokila refused to eat anything and was force fed through the pipe in her nose. I waited for the doctor to arrive, but he never did. The nurse said that he might not even arrive until 2pm. I decided to leave at 12pm; the writhing in pain of Kokila was just too much to take. I needed to get some work done and distract myself.

The doctor didn’t answer my call or message but did finally call back at 5:15pm. He wasn’t too worried about the pain as it is normal with the severity of her burns. He also reassured that her Haemoglobin count hadn’t increased but also hadn’t decreased that day so he had ordered another test which we would get the results back on Friday. More than likely, the transfusion would be pushed back until then.

Slightly reassured, we retired for the day…

Wednesday, October 12, 2011 (Day 9)

I arrived a little late to the hospital at 9:30am to find Kokila in a decent mood which steadily got better and better throughout my visit. The nurses said that the doctor was supposed to arrive around 11:00am so I thought that I would just hang out with Kokila until then. We talked and talked and talked and she ate chicken. The doctor is trying to get as much protein and calories in her as possible so recommended that we make chicken at home and bring it. Joshua made the chicken and Kokila loved it! We then started calling everyone on speaker phone. She talked to Sunil, Vinita Didi, Leena Didi, Vijay Sir, Sangeeta, Rajeshree and Rekha. She was laughing a lot and was beaming from ear to ear when I left her room at 12:00pm. The doctor still hadn’t showed up. He had told me to call him from the Operation Room reception at any time. I went there and the receptionist didn’t quite agree with him. She was not willing to call him. I called his cell but of course he didn’t answer.

I left hoping that he would respond to a message. He did quite curtly saying that I should have met him at 9am at the operating room. Miscommunication again as that was not what I understood. Oh well. Since he didn’t say anything else, I understood that there was no news and I messaged him an apology and that I would meet him the next day at 9am at the operating rooms. In Hindi there is a saying ‘Maska Lagao’ meaning put on some butter and you will get what you want. I did just that, so let’s see what tomorrow brings.

Thursday, October 13, 2011 (Day 10)

I arrived early at 8:45am worried that I would miss the doctor again. Of course I stood around waiting for an hour as he didn’t arrive until almost 10am. The first words that came out of his mouth shocked me “I am going to do the blood transfusion today.” I was ready for it to be happening soon, but not quite that soon. As it turns out, her Haemoglobin had dropped to 8.2 yesterday and he was expecting 8 or 7.8 today. Rather than wait until it was an emergency, he decided to do the Transfusion during the day when there were all the professionals needed in case it went wrong. I asked the time frame and he said within an hour.

I then went up to see Kokila who was once again in a horrible mood. She was having trouble with her neck which was hurting no matter how she kept it. In talking with the doctor later, I found out that is the area that he is most worried about. She is not allowed to use a pillow as it will crush the skin together and cause problems. Kokila refused to eat again and was force fed. I wasn’t able to spend much time with her, and in the half hour I did, she didn’t smile once and didn’t even want to talk to anyone on the phone.

The nurses pulled me aside to sign the release form for the Blood Transfusion which (I hope you will all understand) I refused to do. Kanchan had left the hospital to work in the Thursday market so the family had a little pocket money, and so for the first time in 10 days, Kokila was without a family member. Vinita was at the charity registration office and so it was really difficult to communicate the needs. Rakesh answered his phone and said that both his parents were on their way and would reach in 15 minutes. I decided to meet them downstairs as they would be worried. After half an hour they didn’t show up. We got back on the phones to try to contact them again. It turns out that Rakesh had lied again and they were all still in Khar. They finally left Khar at 11:30am, arriving at the hospital at 12:45pm. The whole time I was just waiting and worried and waiting and worried some more. In the meantime, the doctor decided to retest Kokila’s blood in case there was a match or to take the closest match available. At 1pm, the doctor was in the burn unit and was trying to reassure me again that it would work out. He already had a dialysis machine in the room and everyone was aware of the situation and knew what steps needed to be taken. Unfortunately he then went on and on about how they could only do as much as they could and the rest was up to God and that sometimes people who were barely burned didn’t survive and others who were more than 50% did and how of course they had to do all that they knew how to do and that god wouldn’t do that but that the rest we couldn’t predict and that really no one ever knows just how it is going to go but that god is great and that he would determine and………. I phased out about halfway through and actually ended up feeling more worried than reassured. Oh boy… With a brief explanation of the procedure, Kanchan put her thumbprint as a signature and we were off – being told that the procedure would start within a couple of hours.

I then had the wonderful job of explaining the risk as simply but clearly as possible to Kanchan, Bhola and Rakesh. Everyone has different blood and Kokila’s doesn’t have a match and they have to give the closest even though it isn’t perfect and her body might not like it and then there could be problems but the doctors will be ready. And more than likely it will be ok, but just in case you HAVE TO BE HERE.

Completely spent, I left for a couple hours break with all intention to return. On my way home in the train with the wind blowing against my face I realized that I was in no state to return.

I arrived at Khar school at 2:45pm and collapsed in a chair. Vinita brought me water and took care of me and we planned for Honey (always ready for anything) and Vikas (just as ready to do anything) going to go to the hospital just in case anything was needed.

As Honey and Vikas were arriving at the hospital at 4:30pm, I got a text message from the doctor asking for us to get a medicine from outside immediately. “Lipidem” would increase the immunity against infection – a boost needed during the transfusion. The transfusion hadn’t started because her fever was too high. He sent the drug distributor’s phone number and Vinita immediately called and tried to arrange for it. The distributor was not ready to give the medicine without a prescription. Vikas and Honey then tried to get in touch with the nurses (that in itself taking nearly half an hour) and then convince them to call the doctor for the prescription. This was somehow very difficult and so I called the doctor directly who told me to tell the distributor to call him directly. What a mess. The distributor refused to call the doctor but finally said that he would give the medicine but would not give a receipt. For f(*&$#@’S sake. Did it really have to be that difficult! Finally at 5:40pm Vikas went to get the urgent medicine.

While Vikas was gone, Kanchan was dragging Honey all over the hospital – burn unit to visitor lounge to reception and back around again. She was anxious, worried and fidgety. She kept hugging Honey and saying thank you and being simply appreciative and wonderful. Honey felt that she didn’t deserve the thanks but was glad to see the love in Kanchan’s eyes and the commitment to her daughter. Honey was able to spend half an hour with Kokila who was still in no mood to laugh or smile. She was telling Honey how everyone wanted her to come home soon and that they were sad. Honey told her that they were worried and that everyone loves her very much. Kokila asked where I was with a sad face. Honey explained that I was very tired, Kokila said it was ok. Kokila asked if I would be there in the morning. Even though Vinita is planning to go, Honey said yes to reassure her. Vinita convinced herself that she needed to deal with the situation and saw a picture of Kokila on Wednesday. It was hard for her, but being the strong woman that she is, she is determined to meet Kokila and face her own fears tomorrow.

Vikas arrived with the medicine at 6:30pm. The nurses curtly took it and said that the fever had reduced and they were about to start the transfusion. She also told everyone to go away except one person – that she would call if anything was needed. This is likely not completely true since they were supposed to call in the afternoon for an update and didn’t. Still, it was already a long day for everyone and waiting seems to be endless and the majority of the time futile. Honey and Vikas returned leaving Kanchan with her lovely daughter at the hospital.

It is currently 8:30pm and the transfusion has been running for an hour and a half of the scheduled 4 hours without call or alarm. No news is good news. Let’s hope the phone doesn’t ring through the whole night…

Thanks for all of your love and support and warm thoughts, Tania


---------------------------------------------------------------------------------------

Our Board of Directors and various committee members have responded beyond our dreams to donate money allowing Kokila's transfer to a Burn Hospital in Mumbai. You will notice from the most recent update Oct. 13, 2011, the challenge now is blood transfusions, and fighting the infections. Kokila will likely be in ICU for 3 weeks to 1 month. Although the Doctor is trying very hard to give us some financial breaks - having us purchase medicine outside the hospital - he is limited in what he can do, and the care is expensive.

If you are able to contribute, thank you - any donation will help. If you are unable to do so, please do not feel bad as we know all of you already help us with the schools. We also welcome your good thoughts and prayers for Kokila.

The best and fastest way for us to help financially is through Canada Helps.Org. We are registered with them and the funds donated will go directly into One's bank account.

Follow this link: http://www.canadahelps.org/CharityProfilePage.aspx?CharityID=s79287 / Donate Now / Fund designation: Kokila Emergency Relief Fund  (cut and paste link)

They accept credit cards and debit cards.
All funds raised will be used for the Kokila Emergency Fund. The costs to date have been almost $3,000.



With deepest and sincerest gratitude.
Marilyn





Wednesday, September 14, 2011

Philanthropy in India

I am often asked: "Why do you have to work in India?  India is a democracy and is doing extremely well economically. There are at least 55 billionaires in India. Why don't the people of India give to the millions of people who live on less than $1.00 per day?"

There was an article in the Globe and Mail on Wednesday August 24, 2011 that is the best explanation I have come across.  The article answers the questions far better than I could, and so I am including a large part of this article written by Amrit Dhillon (Freelance writer in India).  I hope it helps you to understand that which, on first look, seems not to be understandable.

For the wealthy, enjoying the fruits of rapid economic growth, charity begins - and stays - at home. .....................
India's growing list of billionaires.....are enjoying the fruits of India's rapid economic growth but have been slow to take up philanthropy.......
Rich Indians prefer to leave their money to their sons and daughters.  The reasons for this lack of charity are complex, but one could be the bias in Indian society toward favouring the family over the wider community.  If, for example, a cousin or nephew needs money or a job, people will go all out to help, but when faced with a beggar or urchin at the traffic lights, will studiously avert their faces.
India's new super-rich and middle class prefer to give only when they get something in return.  They donate generously to temples, mosques and Sikh gurdwaras because they seek to procure their personal salvation.  It is to these temples that billionaires and Bollywood stars troop to please the gods and receive a blessing in return for their donations.
While these temples are so fabulously rich they make the Vatican look like a pawnbroker's shop, anyone running a charity in India has a hard time.  An acquaintance who runs a home for destitute widows outside New Delhi struggles to persuade affluent Indians even to pay for cows so that she can provide the widows with mild.
The culture of philanthropy has yet to take root in India.......
A second reason for this parsimony could be a deep insecurity.  Perhaps, when they know around 600 million of their fellow citizens live on less than a dollar a day, well off Indians living on islands of affluence, are fearful that, one day, through a twist of fate, they too could sink into the sea of poverty around them.
There are plenty of examples of this primeval insecurity.  Corrupt Indians never take just "enough" bribes to buy a house or send their children to university.  They go on and on accumulating because whatever they squirrel away is just never enough for a rainy day."........
But the insecurity argument might just as easily apply to middle-class families where, if the breadwinner loses a job or falls sick and runs up a huge hospital bill, the risk of sinking into financial trouble is real.  It cannot, however, explain the stinginess of the seriously rich.
A more plausible explanation, suggested by Mr. Jhunjhunwala, is that the super-rich are not yet ready to give because they are still preoccupied with getting. 
The new wealth is just a generation old, acquired over the past 20 years since India embarked on liberalization.  Perhaps new money has to become old money before philanthropy can be taken up.  So we'll have to give rich and selfish Indians the benefit of the doubt ... for the moment.  

Wednesday, August 24, 2011

A JEALOUS FLY

Now I am sure that title has sparked some interest.

As all of you know, English is one of the main subject areas for our students in Mumbai.  We are very proud of their development in this area.

Learning a new language has many challenges; in particular, spelling, word placements in sentences, punctuation, to name a few. 

The following story was written by one of our star pupils and is written word for word, including all the English spelling mistakes. 

 Please make note of the "moral of the story".
 Mallika has given all of us "food for thought".


Once a pond a time there was one fly and one mackito.  Fly was very jealous on mackito. Because mackito gets to drink blood. that why fly was jealous on mackito.
Fly disad to kill mackito because if there is on mackito in the world.  They will be King of all incet. 
Now all fly goan to finght with mackito.  But mackito was very strong.
Because mackito was very stong theat they can beat the fly and fly will die.  Now have very big fight and all fly is die.
Because fly was very weak, jealous and stupit. that's why they loss there friend.
We have to thank what we have and that we are.