Good News from Khar Re: Kokila

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.

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.

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