Varun Bhaskaran

Born: 10-DEC-2003
Died: 04-JUN-2005



Welcome to Varun's Web Page. It has been provided to keep family, friends and well-wishers updated on Varun's progress.

Born in December 2003, Varun was diagnosed with Wiskott Aldrich Syndrome at 5 months.

Knowing that Varun's only chance for survival is to undergo a bone-marrow transplant, our family, friends and many well wishers helped spread the word among the community to get as many people tested to see if we could find a match for Varun and also to educate them on the need to register with the National Marrow Donor Program.

With no bone marrow match found, we decided to fall back on an (already known) cord-blood near match. We temporarily moved from New Hampshire to be near Duke medical Center in North Carolina. Varun got a unrelated cord blood transplant on November 26th,2004.


Varun was making very good progress and we were planning to return to New Hampshire sometime in May. Unfortunately, on April 18, 2005 Varun went into a septic shock and was rushed to the ICU. After surviving a respiratory failure the very next day, the next few weeks saw Varun making a miraculous recovery. However, our hopes were shattered when Varun's lungs started to fail beginning of week 4 in the ICU.

Sadly, after fighting so hard, on June 4, 2005 our sweet little darling breathed his last few breaths in his mother's arms, and with daddy holding his hands, Varun started on his final journey to God's kingdom.

Oh little sweetheart, mommy and daddy pray that
one day we'll all be together again,
like it was supposed to be.

Journal

Monday, April 18, 2005 6:04 PM CDT

04-Jun-2014

Remembering our sweet little pumpkin 9 years on.
You will be thrilled to hear your little brother is all excited that he will soon be boarding the school bus when he starts Kindergarten in late summer.
Hand in hand, the two of you walking towards the school bus, a beautiful sight we'll never get to see.
Mommy and daddy will always miss you, sweetheart, and we know you will watch over your little brother always!





10-Dec-2013

Happy Birthday, sweetheart!
10 years old you would be today, dear Varun.
When mommy told Pranav today was his brother's b'day, prompt came his innocent response: "are we going to his b'day party today?"
We miss you dearly, sweetheart! Love you so much!!




04-June-2013

Remembering you on this day, as we do everyday, sweetheart!
As we watch your little brother grow up, either teaching him to ride a bike or playing soccer with him - we miss having you by our side, sweetheart!
When we show him your pictures, he thinks those are his 'baby' pictures! He surely resembles you, sweety.
take care, our precious little one, we love you so much!




04-June-2012


Remembering our dearest, sweet little pumpkin, as we mark yet another year of life without you.
Pranav brings so much joy and color to our lives, and as we watch your little brother grow, little does Pranav realize that he is missing a brother who would have loved to be around to fuss with or hang out with him.
Sleep tight, sweetheart Varun!





10-Dec-2011

Dear Sweetheart,
Wishing you a very happy Birthday, dear Varun. You would have turned 8 today. Mom and dad try to imagine just how tall and grown up you'd have become by now.
You'd love to see your little brother's antics, we enjoy every minute of it. We miss you sweetheart, love you always!!
-mommy and daddy and Pranav.



04-Jun-2011


Dear Angel Varun,

Remembering our dear son on this day 6 years ago when mommy and daddy bid farewell to you.

Quite a lot of interesting things to tell you in the past 6 months. Your little brother turned 2 recently !
He has made quite a few friends in the neighborhood and his babbling has recently turned into real words that now begin to make sense to mom and dad :) Pranav and mommy spent 3 long months in India, enjoying the love and care showered on him by our extended family, including his grandparents.

We really miss you sweetheart, and how much we wish you were here beside Pranav, holding his hand and guiding your little brother.

Sleep tight sweetheart, mommy and daddy are always thinking of their brave little fighter.



10-Dec-2010


Happy Birtday dear Sweetheart Varun. On this special day we are in India, visiting with your little brother and remembering our little sweetheart's special day.
It is so much fun to watch Pranav grow up and we can feel your presence in every step he takes, knowing that you are always watching over your little brother.
Though you never got a chance to visit India, mom and dad were pleasantly surprised to learn that people here still remember you, as do our loved ones back home.

Sleep tight sweetheart, we miss you so much.




04-Jun-2010


Dear Sweetheart,
Yet another year rolls by without you,
Our lives now blessed with your little brother,
Watching him grow this past year has been amazing.
His resemblance to you has not gone unnoticed,
As people pointed out at the Rainbow Walk at Duke last month,
when they saw your picture in the "Wall of Heroes".


Your little brother celebrated his first birthday recently,
Bringing back memories of your first birthday in Duke hospital,
Just two weeks after your cord-blood transplant.
And As mommy and daddy helped you cut your first b'day cake,
Surrounded by the lovely people who took care of you in Duke,
You probably were left wondering what it was all about!

We miss you sweetheart, so too does your little brother.
And when we watch Pranav play by himself
Our eyes well up in tears when we try to imagine
His big brother helping him up every time he falls.

Sleep tight, our sweet angel - we always love you.



10-Dec-2009


Happy Birthday, sweetheart Varun !!
And this year your little brother joins in singing happy birthday to you, isn't that sweet !
Many people say your little brother resembles you in many respect.
And just how much fun it would have been to watch you play with Pranav, sweetheart!
As we get ready to move to our new house this week with our new bundle of joy, we continue to feel a void that will never be filled.
Miss you so much, Varun!



04-Jun-2009

Its been 4 long years since you left us, sweetheart. We hope you are enjoying every bit of your time in your new world with your granpa and your angel friends.

Oh sweetheart, just how proud you must be at the arrival of your baby brother Pranav who has brought joy back into the life of your dear mommy and daddy. We miss you very much, dear Varun.

As you watch over your sweet little brother and also your mommy and daddy, the beautiful memories you left behind kept us going and continues to give us strength and peace.

Take care dear Varun, mommy and daddy love you so much!



10-Dec-2008

Happy 5th Birthday to our sweet Angel Boy in heaven!
Imagining you dancing with the angels and playing with grandpa,
Hope you have a lot of birthday fun today.


Grandma visited us this summer and is getting ready to return home tomorrow,
That she never got to meet you hurts her beyond words can say
Comforted at the same time knowing that grandpa is taking good care of you in heaven.

Mommy and daddy miss you so much, sweetheart Varun!




04-June-2008


Three years today since you left us, and we miss you so much, sweet angel Varun !

You continue to give us strength as we cherish all those precious moments we spent together, sweetheart. In our thoughts, we continue to hug you every single night, dear son.

The depth of our loss is immeasurable, but the love left behind gives mommy and daddy the strength to endure each day.

Mommy and daddy took part in the Rainbow walk last month with our friends, getting to meet many of the wonderful staff who had cared for you at Duke.

Take care, sweetheart!



10-Dec-2007


Happy Birthday, our sweet little angel Varun!

Its amazing to think that you would have turned 4 years old today. Everytime we see kids playing, we picture our precious little darling in the merry company. Thinking and talking about you gives us the most joy of all, sweetheart! So far away, yet to mommy and daddy you are always beside us;
and in our hearts you will stay forever, darling.

Mommy and daddy have since returned to settle down in the town where you spent your last 8 months. It was a period filled with hope and despair, and your brave struggle taught us a lot about life and love. In the midst of the sad memories, the warm and tender moments of joy and happiness that you showered on us is what mommy and daddy treasure the most.

We went through a brief period of joy when we learned that we were going to be blessed with a little sister for you. Sadly, Our joy was short-lived but the strength and courage that you taught us is helping mommy and daddy to cope with yet another loss and to stay strong and to comfort each other.

Hope you are enjoying this day like any other day in heaven, but to mommy and daddy this is the most special day in our lives!

We miss you so much, sweetheart!



04-Jun-2007


Dear sweetheart angel Varun, it is now 2 years since you left us.

Even though you spent the briefest of time with your mommy and daddy, every day we say a silent thank you for the way you brightened our lives, dear Varun.

You now have a cute little cousin, Aabha, who was born 3 months ago.Mommy and daddy had just been to visit lovely Aabha and her family, and cuddling this little cutie brought back memories of our own little sweetheart, honey! We see you in every little baby we come across.

Very soon mommy and daddy will be moving back to North Carolina, very near to the town where you spent your last 8 months with mommy and daddy - where you had given us so many memorable moments that are forever etched in our hearts, sweetheart Varun.

We miss you so much, Varun ! The love you gave us helps us to go on each day. There are so many memories of you everywhere we go.

Thank you for taking care of us and watching over us, our guardian angel!





10-Dec-2006 ( Happy Birthday, dear Varun !! )


Today is a special day for mommy and daddy - this day 3 years ago we welcomed you into the world - the day that our little miracle arrived!

At the stroke of midnight today, mommy and daddy sang Happy Birthday to you . At the same time, all the angels in heaven would have gathered around you to sing Happy birthday to our sweet little cutie pie.

Thank you honey for blessing our lives. We continue to gather strength from everything you have taught us during your brave struggle.

We hug our precious memories of you close to our hearts in the hope that one day we will all be together again - when mommy and daddy can cuddle you once again.

Love you always, dear Varun!



4-Jun-2006


Dear Sweetheart, its a year today since you left us. It still hurts as much as it did a year ago, but mommy and daddy are trying their best to gather strength from your courageous fight that left a timeless impression on many of your well wishers.

In the morning we did a puja as per the hindu custom (where we lit a holy lamp and laid out plates filled with kheer (a traditional South Indian dessert made from rice and milk) and your favorite food items like Baby Goldfish and fruit puffs). Mommy's friend Sharada and her family were present for this puja.

In the evening we visited the Indian temple in Massachusetts where we had conducted a couple of bone marrow drives during our search for a bone marrow match for you 2 years ago. Your cousins Rhea and Sparsh and Uncle Sushand and Aunt Rajeeta from Connecticut joined us at the temple.

Inside the temple, while we were waiting for your cousins to arrive, mommy was in for a pleasant surprise when a little boy who appeared to be a little over a year old suddenly came to a standstill in front of mommy who was squatting on the floor. He looked at her and the next moment he was sitting on your mommy's lap even before mommy could realize what was happening. The child's gesture surprised the small crowd present in the temple. This little darling made himself comfortable on mommy's lap for over a minute before he decided it was time to leave. Hard to believe, but It seemed as if this little kid recognized a mother who was grieving the loss of her own sweet little angel!

Quite a few family members and friends called in (or emailed us) to let us know that they were thinking of you and your parents on this day that left a terrible void in our lives a year ago.


Thank you to all of you who continue to keep angel Varun in your thoughts and for lending us support.



12-May-2006


Sweetheart Varun, today has been a very difficult day for us because we can never forget this day a year ago...the day you saw mommy and daddy for the last time before the doctors put you in a medically induced coma when your breathing became more labored.

We never imagined that would be the last time, but you seemed to know, honey. Only earlier that day you had managed to get the strength from within to recognize your mom and touch her face - and we didn't realize then that you were bidding us farewell.

In the midst of her sorrow, mommy can take comfort knowing that she was always there for you, sweetheart.
You were blessed to have the most wonderful mom, Varun dear. I still can't believe that mommy never once left the 5200 unit during the 2 months that you were in-patient for the transplant!

Sweetheart, you and I can wish a Happy Mother's day in advance to the most wonderful woman in our lives. Thank you Mommy!!
Let's also not forget all the wonderful moms whose love and dedication makes the lives of our children with special needs, truly special.

Next time Daddy will tell you about the Rainbow Walk that we attended last Saturday.



03-May-2006


Dearest Varun, mommy and daddy are travelling to Durham this weekend to participate in the Rainbow of Heroes Walk. We hope to meet with all the families that have travelled down this path and all their well wishers.

Last year's event took place while you were in the ICU, then believed to be on the road to recovery, so we attended the walk to release balloons with 'get well' messages for you.

Oh honey, how much mommy and daddy believed that we would be coming back with you to Duke to participate in the Rainbow walk this year! Sadly it was not to be.

Now mommy and daddy will be walking in memory of the most precious gift God had given us.

It will be very hard, sweetheart , but we will be there....because you have taught us how to be brave and strong.


NOTE: if you wish to help the Duke Pediatric Family support program, please visit their website : Duke PBMT


17-Apr-2006


Dear little sweetheart Varun, its been a while since we updated your website.
When we visited India last December, we went on a pilgrimage to several temples in the state of Kerala in South India, including the Tirunelli temple to scatter your ashes in the sacred Papanashini river which flows alongside it. This is a beautiful temple town surrounded by thick forests teeming with wildlife and sublime landscape of lush mountains.

Its April 17, a year today since the three of us spent our last happiest day together. We took you to Duke Gardens (for your first visit to a public place since your transplant).
You were thrilled with the atmosphere at Duke Gardens as you basked in the attention lavished on you by quite a few people there. Later that evening at dinner time when you stood up against the couch and tried to get into mommy's plate, little did we realize that we were having our last family dinner together.

12 hours later our lives would turn topsy-turvy - you suddenly became sick and we rushed you to Duke hospital. After 2 nerve wrecking days (when the doctors miraculously stabilized you following an acute respiratory failure), it appeared that our little darling was winning his brave battle. To allow your lungs to heal, they kept you heavily sedated for 3 weeks at the end of which you came off the ventillator.
You opened your eyes in search of your dearest mommy and touched her cheeks with your jittery hand. That was to be your last (physical) contact with your parents as you went back to PICU again where they kept you heavily sedated for another 4 weeks by which time you could fight no longer.

We can't pretend we don't cry anymore, we do. And at home our conversation almost always centers around you - how you would have reacted to this, how you would have reacted to that...or whenever your favorite ads play on TV.

Rest in peace, our little sweetheart Varun. And one day we will hold you and kiss you forever in heaven.



10-Dec-2005 (Varun would have turned 2 today)


Oh Sweetheart Varun, 2 years ago today you brought so much joy and happiness to our lives. You were God's gift to us after a long wait, a beautiful child to love and care for.

Though our joy and happiness was short-lived, you taught us the meaning of love and your valiant fight to stay with us in this world, though unsuccessful in the end, has been an inspiration to many of us.

This is your first birthday in heaven and we can hear the angels (including your grandpa) singing happy birthday to our little pumpkin. Hope you will have the most wonderful birthday in heaven, dear.

Our dearest little sweetheart, thank you for touching our lives (and the lives of many of your well-wishers) the way you did.

love,
mommy and daddy.


Nov 26 2005


Dear sweetheart angel Varun, today you would have completed 1 year since your cord-blood transplant. Though you are no longer with us, we continue to find strength from the lessons you taught us in your brief lifetime with mommy and daddy.

Mommy and daddy are currently in Sultanate of Oman, visiting your aunt and family on our way to India. Your little cousins had heard about you, but they are too young to understand where you are now.

We miss you every moment of the day, our sweet little pumpkin. If only you were still with us on this important day, the day a year ago we thought would save our most precious darling from the clutches of Wiskott Aldrich Syndrome.


Please pray for dear Elisha who is battling with lung issues in the ICU.




04-Nov-2005


Our little sweetheart in heaven, it has now been 5 months since you left us, yet we feel as though you are near, though we can only talk about our only child we'll never get to hold again.

After months of hesitation, we finally mustered up the courage to watch those precious "camcorder" moments we had captured of you. As hard as it was to watch the videos, we'll always treasure the beautiful memories that will live for ever.

Yesterday was mommy's and daddy's 9th wedding anniversary. It hurts beyond words knowing that you are no longer with us,sweet pumpkin, and our milestone doesn't mean much without you. On the other hand, knowing that you are watching over us does keep us going.

Mommy and daddy will be visiting India for a month between Thanksgiving and Christmas, primarily to perform religious rites (for you) as per the Hindu custom and to visit our family and friends. For many months (after you were born) we had dreamed about visiting India with our precious darling - we had talked about it and yearned to see it happen....but God willed otherwise

It is with a heavy heart that we'll be making this trip, honey, for never in our wildest dreams did we ever imagine that you would leave daddy and mommy. You never got the chance to enjoy the warmth and love of our extended family (back in India) who were eagerly
waiting to hug and cuddle you. However, mommy and daddy can take comfort in the fact that the love you received from mommy and daddy is probably reflected in that charming smile of yours that had captured the hearts of many.

You continue to inspire us, sweetheart, and the lessons we learned from your brave struggle gives us the strength to cope with our loss. Thank you for that gift and for having been able to share it with all your well-wishers.

Since our last posting, we lost Dana who was transplanted at Duke a month before Varun's transplant. Please keep Dana's family in your prayer's as they try to come to terms with the loss of their beatiful child. Dana's mom had constantly sent us words of hope and encouragement (when Varun was battling for his life in the ICU) for which we are ever so grateful to Dana's mom.

Please pray for Maddie who remains in ICU and continues to fight bravely. Please also pray for Colby who was rushed to ICU earlier this week. We had met Colby and his family while at Duke. We pray that both these brave warriors will overcome their difficulties and make a quick recovery.

God Bless!

09-Oct-2005

It was a year ago today that we left for North Carolina to start Varun's transplant treatment at Duke University Medical Center, our only hope of saving the life of our precious Varun. At the time, we anticipated our stay in Durham to last 4-5 months.

The days leading to our departure were tough emotionally, which only heightened on the last night (before the trip) as we both watched over our sleeping little angel, a soft smile lighting up his face even in his sleep, as if appearing to reassure his daddy and mommy. As daddy and mommy looked at each other that night, the enormity of the uncertainty that lay ahead of us was clearly written on our faces and we prayed to God to not let this be our last night in New Hampshire as a complete family".

Varun enjoyed the long trip that spanned 2 days and was very well behaved all along, until about an hour before we reached Durham when he became fussy.


Oh sweetheart, as we look back to that day a year ago, with tears in our eyes, our heart breaks ever more because you are no longer with us...to love you and cuddle you like all other parents do. We miss you more than we could ever express in a lifetime, honey.


Last week we were deeply saddened to learn that AJ lost his battle and became an angel. Please pray for AJ's family to find strength, peace and comfort during these trying times.

We recently learned about sweet Elisha who was diagnosed with Wiskott Aldrich Syndrome, the same disease that Varun had. Elisha was transplaned at 11 months, (as was Varun), but has been struggling with Graft vs. Host disease ever since.
Please visit Elisha's website to learn more about sweet Elisha and please keep him in your prayers. His wonderful mom has been an inspiration to many of us.

Another child we know very well during our stay in Duke needs your prayers even more now. Maddie Trimper is not doing well so please keep Maddie and her family also in your prayers.



04-Oct-2005



My apologies for the hiatus....

It is 4 months today since you left us, sweetheart and life is never the same again. The profound sense of loss and pain is overwhelming at times.

Over the past month we visited the newest member in our extended family: your little cousin Sparsh in Conneticut. Sparsh is very cute - and adores the attention he receives from his sister Rhea.

Cuddling Sparsh brought back so many memories of you that no one can take away from us, honey. We miss you terribly - and we know how much you would have loved to play with your little cousin.

And i will never forget that day in June, only a week after you became an angel, when we stopped in Connecticut on our way back home from North Carolina. 3 year old Rhea was playing in her backyard, scanning the sky with her kid telescope from her playhouse,
when suddenly she said: "I spy Varun baby !!" .

At that very moment I realized that i only had to look up in the sky and I could see you smiling down on us from up above, as you whispered in my ear "Don't worry, daddy - I'll look after you and mommy from now on"


Thank you, my sweet little niece.

Please pray for another kid in the 5200 unit who is currently in PICU. His name is AJ, an amazing kid that everyone would fall in love with from the first meeting. He is in need of your prayers now for a quick recovery.

On a sadder note, 1-year old Emma lost her battle last week after undergoing transplant at Duke in June. Please keep the family of this sweet angel in your prayers as they cope with life without Emma.

04-Sep-2005


It is 3 months today since Varun left us for his new home and it still hurts as though it just happened. When we left Durham 3 months ago, we felt like we were going far away leaving our little darling behind in Durham (because of the many pleasant memories Varun had blessed us with during our stay there). We still yearn and pine for you, sweetheart. With God's grace, Ramya and I continue to gather strength from the happy memories you left behind.

After Varun was diagnosed with Wiskott Aldrich at 5 months of age, we never again let our sweet pumpkin sleep in his crib. We would tuck Varun in between us, and he loved sleeping with his dear mommy and daddy.

Gone are those days when Varun would wake up in the morning and finding daddy still in bed, he would crawl excitedly over the pillow and place his head on dad's chest (and try out different positions) until he finds a comfortable position and goes to sleep again.

Honey, we will never forget your face that beamed the most joyful smile we have ever seen as you crawled over as fast as your tiny legs could carry you.

Oh sweetheart, if only daddy and mommy knew that your stay with us would be very brief, we wouldn't have taken our eyes off you for the rest of your time with us. When you touched mommy's face On May 12th, which was incidentally also the last time that you interacted with us, little did we know that you were actually bidding us farewell in advance. Dr. Martin was quite surprised that after 3 weeks of heavy sedation, you could recognize and touch mommy and daddy so soon. Or did God give you the extra strength to let you bid farewell to the two most important people in your life?


It seems like only yesterday we were laughing and singing songs in the living room. And today you are no longer with us, sweetheart.
We miss your presence, darling Varun, and your memory we treasure forever.

If only God gave us another chance to take care of you, darling.....

Our heart goes out to Richelle and Joe who lost their sweet darling Queen Maddy on August 31st. We pray for Maddy as she begins her new life in the company of angels, a world that knows no pain and from where she will watch over her dear parents and brother.


28-Aug-2005

Earlier last week Dr. Kurtzberg sent us Varun's lung biopsy report.
It took more than 11 weeks for the results to come back!

The biopsy showed severe damage to the alveolar cells of the lung. They also saw some bleeding in and around these cells - called "alveolar hemorrhage". They did not find any infection of
any kind (fungal, viral, bacterial).

Dr. K added that these findings are indicative of lung failure caused by toxic reactions - from a combination of events including chemotherapy, the sepsis shock (on April 18th) and the long time that Varun had to be on the ventillator with higher pressures and oxygen.

We were eagerly looking forward to the biopsy report to see if they could find anything that Varun's doctors didn't know at the time so that it could help them in treating future patients. Having said that, we've got to bear in mind that medical science isn't perfect - and the biopsy
is only testing for things that medical science already knows about.

We've lost two angels in the past month: Frannie and Ryan Holt. Please pray for their families, to give them the strength to carry on with sweet memories of their loved ones.

Please pray for Queen Maddy who is in PICU for more than a month now and has been making good progress in the past 2 days. Her parents got to hold their precious darling today after more than a month. Having gone through a similar experience ourselves with our own sweet darling Varun, we can understand what it means to get to hold your precious little one after so many days at his/her bedside. We felt so happy for Maddy's parents today and please pray for their darling to make a speedy recovery.

Please also pray for Dana who underwent BMT last year only to find out last month that she had relapsed. Dana's mom was a constant support to us when Varun was admitted to PICU in April.

We are very happy to hear that our good friends, the Tatem family, whom we met at Duke, returned home last week with their two sons who underwent BMT in April. we pray to God to continue to take good care of Nathan and Thomas.

We are also very happy for Zach (Zach got transplanted in April) who returned home with his mom Mel earlier this month. Our prayers are with you too, Zach and Mel.

take care


31-Jul-2005

Dear sweetheart, today was daddy's birthday. After you were born, never did mommy and daddy ever imagine that our birthdays would come and go without you being with us.

All our birthdays since Varun arrived were spent in the hospital. Mommy's b'day is only 4 days after Varun's, so when Varun was born mommy was still in the hospital with Varun on her birthday.
Last year Varun got transplanted just 2 weeks before his 1st birthday, with both Varun and mommy celebrating their birthdays in the hospital again. The only exception (well, partly) was daddy's birthday last year - we all went to sleep the night before, thrilled at the thought that at last Varun was going to be home on his parent's birthday for the first time!!

But our joy was short-lived because next morning when mommy woke up at 4am to check on Varun, she noticed that Varun was running a very high temperature. Already diagnosed with Wiskott Aldrich Syndrome just 2 months earlier, we immediately rushed to Children's Hospital in Boston with Varun where we spent the next 3 days.

This day last year also marked the first bone marrow drive our friends organized for Varun, at the Sri Lakshmi temple in MA. Ramya and I visited the temple this morning.

Honey, your Aunt Pia and Uncle Tim got married yesterday. Congratulations to the most wonderful couple who in the midst of their own struggle, always finds time to reach out to the community - truly incredible indeed. They both had closely followed your journey, and not to forget that aunt Pia got transplanted only 2 days before you did, sweetheart. As Tim told me today, "we know that Varun has blessed us already". (ABC Channel's Good Morning America ran a story on Pia Awal and Tim Dutta last Friday morning).

Little Frannie has joined your wonderful world. She touched so many hearts and minds during her courageous fight.

Sweetheart, we know that you are in the best possible place that knows pure joy and no pain. We continue to cherish those 17 beautiful months you spent with us. It is going to be a long struggle for us, but there is no denying that our lives are defined by those we have lost.

20-Jul-2005

Its been a little while since the last update. Thank you for continuing to check on us.

Our journey without the light of our life continues...and we find it very difficult to believe that our little sweetheart isn't with us anymore.

Oh honey, we are still trying to come to terms with why you left us. Mommy and daddy cry for you every day, sweetheart. If only we could hug you one more time, honey, and whisper in your ear how much we love you..........

Please continue to pray for Frannie. She is still on life-support.

04-Jul-2005 (Monday)


"Happy 4th of July" and hope you all have been enjoying the fireworks.

Today also marks the one month anniversary of the loss of our sweetheart. Thank you to all who have emailed us today to let us know that you are thinking of us on this day.


Sweetheart, last Friday we welcomed a new member to our extended family when Sparsh was born to Aunt Rajeeta and Uncle Sushand. Congratulations to the proud parents!!

Please continue to pray for Frannie, who is recovering well in PICU.


28-Jun-2005

(PS: Please pray for Ashley's family as this darling little girl earned her angel wings this evening. Angela, we are so sorry for your loss. Ashley was such a lovely girl and we are deeply saddened by your loss. May God bring you peace and comfort knowing that you did everything that Ashley's loving parents could ever do).



Sweetheart, today mommy and daddy went to Boston to meet with your oncologist at Dana Farber, Dr. Pai, and your immunologist at Children's Hospital, Dr. Butte.

Driving down to Boston brought back memories of the numerous trips we made with you to Dana Farber and Children's Hospital last year. Though only a 65-mile drive from home, it would take us anywhere between 2 and 3 hours to get there, and you would get so upset with the traffic holdups in Boston.

Though we ended going to Duke for your transplant, Dr. Pai and Dr. Butte had followed your progress very closely.
Dr. Pai was interested in talking to us about you, hence this meeting.

While talking to Dr. Pai and Dr. Butte we came to know that Dr. Fred Rosen, one of the nation's top immunologists, had passed away a month ago. Dr. Rosen’s research at Harvard focused on the pathogenesis of primary immune deficiencies that afflict children, such as Wiskott-Aldrich Syndrome. And it was Dr. Rosen who confirmed last year that you were afflicted with Wiskott Aldrich Syndrome.

Thank you Dr. Rosen for your valuable contributions that have helped save so many lives.

Sweetheart, we are very glad that Dr. Pai and Dr. Butte could meet with us today - the discussion we had today helped mommy and daddy immensely. And we thanked them both for taking such good care of you before we moved to Duke, North Carolina, and for continuing to think of us even now.

good night, sweetie and please take good care of Ashley.


27-Jun-2005 (Monday)

Oh sweet pumpkin, when you were with us, going to work was so sweet because you and mommy would always wave bye to daddy from the balcony.

And while at work, images of your infectious smile had a magical effect on daddy. The thought of coming home to those sparkling eyes and gorgeous smiles made daddy feel so proud and happy.

Today daddy went to work for the first time in more than 8 months. And today mommy stood all alone on the balcony, her eyes welled up in tears - and for a moment i thought i was searching for your tiny hands waving at me from the balcony.

I was indeed fortunate to be allowed to work from home while you were undergoing treatment at Duke. For this daddy and mommy are always thankful to daddy's manager(s) who made it possible.

Do you remember that day in April in Durham when mommy and daddy were discussing going back to New Hampshire soon? I then turned to you and said, "Sweetheart, daddy is going to miss you big time when i start going to work again back home", and you gave us one of those radiant smiles of yours.

Oh honey, how much i wish now that 8 hours were all that separated you from daddy for, while daddy was at work every day. It hurts no end that when daddy returns from work now there will be no Varun waiting to be cuddled any more. And mommy misses you every moment of every day.


HOw did we lose you, honey? You loved us so dearly and we loved you even more that we thought nothing could take you away from us.

(Please continue to pray for Frannie who is recovering in PICU. Also, another sweet girl that we met in the 5200 unit, Ashley, is now fighting for her life in PICU (www.caringbridge.com/ny/ashley). Please pray for Ashley to make a quick recovery).

26-Jun-2005 (Sunday)

Posted above are the pre-transplant photos of our little darling.

Oh sweetheart, we miss you so much. Our tears haven't stopped, and mommy and daddy don't believe it ever will, sweetheart. We love you and thank you for spreading so much love and making this world a beautiful place.

(Please pray for Frannie who was admitted to PICU a few days ago. We got to know Frannie and her mom Viesta when Varun got admitted again in April. Frannie's website is www.caringbridge.com/nc/frannie. Please let her mom know that we all are praying for precious Frannie).


20-Jun-2005 (Monday)

It gives us some comfort to share with you a few photos
of Varun that was taken in the last few weeks before Varun fell sick and got admitted to Duke's PICU.


We would also like to share with you a few video clips of Varun taken in the 2 months just before he fell sick on April 18th.

Video-1 (Varun's Crawling video)
(this video highlights two of Varun's traits: his determination in the face of opposition when he tries to pull out a fruit-puff (that he had dropped a little earlier) from under the couch, and his nature to scrutinize anything that he picks before putting it in his mouth).
Video-2
Video-3
Video-4 (this video shows Varun pre-transplant)




15-Jun-2005 (Wednesday)

Sorry for the delay in updating the journal....leaving Durham, NC was emotionally very hard, and entering our apartment in NH when we got back home on Sunday evening wasn't any easier. Its been a tough journey without Varun, but thanks to my cousin Sushand who gave us company until Connecticut and my colleague Sathu who came from NH to give us company on the last stretch of our journey . It was so kind of them to be with us during this journey.

I will write in detail in the next day or two. Ramya and I are trying to cope with the loss of our precious darling. Again, thanks to all for your support all along.


09-Jun-2005 (Thursday) 11:00 hrs (EST)


We have begun packing and preparing for our return to New Hampshire after staying 8 hopeful months in Durham. We plan to leave tomorow (Friday, June 10th), exactly 8 months since we arrived in Durham on October 10th last year. Driving 850 miles without our precious darling is indeed going to be difficult, but my cousin Sushand had already volunteered to come down tomorrow (from CT) and drive back with us. Thank you Sushand.

Every tranplant patient's family relocates to Duke not knowing what the future holds for their child. When we came to Duke, we didn't know whether we would be lucky enough to go back to New Hampshire with Varun or not. However, as Varun's treatment progressed, he made slow but good progress with hardly any hiccups - and he faced no complications that is typical during transplant. This only helped to give us a false assurance that we will indeed return to New Hampshire with Varun !! God willed otherwise and we are trying our best to accept it.

As we bid adieu to Durham/Raleigh, we'll have a special attachment to these wonderful towns because Durham is where Varun spent his last 8 months, and Raleigh is where he was cremated. And almost as important is the (new) family that we now have in Durham, those wonderful and sincere well-wishers of Varun.

Sumathi's family, Geetha's family and Heather (dear Gracie's mom) took great care of us during this ordeal. Shilpa (Dr. Parikh's wife), we are grateful to you too.

Dear Caringbridge families, you have been so supportive of Varun and his parents......the continous prayers you helped send out helped us stay positive throughout Varun's hospitalization. Thank you.

Varun's best buddy Maureen visited us many times to lend support...so too did the social worker Marion Kalbacker.

To all the wonderful staff at the Bone Marrow Unit and especially the Pediatric ICU, we are so thankful to you for taking care of our little darling and making his last days comfortable.

Just as Varun's struggle inspired so many of you, please do not forget that there are numerous families (now and in the future) going through the same uncertainities that we had to go through. Please continue to support all such families because they were hand-picked by God to take care of special children - and at the same time, they need your support. We have been there, and we have experienced it - any help you can provide to such families will be greatly appreciated, while they take care of God's special children.

And finally, thank you to all of you for keeping Varun and his parents in your prayers while Varun fought so valiantly. Our little darling has inspired so many of us, thank you Varun.

He came, he saw and he captured so many hearts in his very short lifetime.

Thank you Varun for blessing our lives!


08-Jun-2005 (Wednesday) 23:00 hrs

It gives us some comfort to share with you a few photos
of Varun that was taken in the last few weeks before Varun fell sick and got admitted to Duke's PICU.

06-June-2005 (Tuesday) 23:50 hrs (EST)


The service to honor our little darling took place at 2 pm yesterday, witnessed by a small gathering of family and friends. Mr. Sankarkumar and Mr. Sridhar recited chants from the Hindu scriptures. I then carried a small earthen pot filled with Ganga-jalam (water from the River Ganges) on my shoulder and encircled the casket in an anti-clockwise direction 3 times. Shortly thereafter Varun was cremated, but not before Ramya and I planted a final kiss on our little pumpkin's forehead.

Thank you Mr. Sankarkumar and Mr. Sridhar for giving Varun a memorable service, and to all those who worked behind the scenes to arrange a quick service/cremation. Ramya and I would also like to thank all those who came to bless our little darling. And thank you to each one of you who has called us since Varun's departure, or have left warm guestbook entries or emails to let us know that they were touched by our little hero.

(Mr. Sankarkumar has detailed Varun's service at the following url: http://www.kanchiforum.org/forum/viewtopic.php?t=967 Please look out for the posting dated Mon Jun 06, 2005 1:49 am).

Ramya's friend Sharada and her family flew in from New Hampshire on Friday to see Varun. Unfortunately, Varun had left us just 20 minutes before they arrived. It was a huge disappointment that Sharada couldn't see Varun in time, but her presence was a big relief for Ramya.

My brother Tarun and his family had come on Friday and we are very happy that he was present when Varun bid us farewell.

Varun came into our lives just when we were beginning to wonder if God would ever be kind enough to grant us a child. We are ever thankful that HE did not disappoint us, picking this fortunate couple to take care of HIS adorable child who needed special attention because of his immunodeficiency. HE gave us the wisdom to take the right decisions for Varun when we were faced with difficult choices, HE brightened our lives through Varun's infectious smile, his lovely big eyes and his love for his parents.

When Varun breathed his last on Saturday early morning, both Ramya and I were able to gather strength from some unknown source - we both were able to hold up bravely. Only when the casket arrived a few hours later to transport Varun to the decedent care, did we wake up to the reality of losing Varun and broke down a bit.

As Varun's final hours approached on Saturday, Ramya and i tried to seek additional comfort knowing that he will soon be in the company of his grandpa who had passed away 7 years ago after being on life support (oscillator) for more than 8 days. My dad was very unfortunate that he was not blessed with a grandchild during his lifetime, but from heaven he has witnessed the arrival of 4 grandchildren, Varun being the last. It gave us great comfort to know that his last grandchild incidentally would also be the first he could now cuddle and play with in heavenly abode.

We tried our best to create a relaxed, happy atmosphere during Varun's last moments, not wanting to let him feel the pain and sorrow deep inside us. We talked to him listing all the happy moments he gave us. Thank you mom for giving us this advice....though it was extremely difficult to hide our sorrow, it does make us feel very relieved that Varun only felt happiness surrounding him when he took his last breathe.

Later on Saturday night, accompanied by my brother, Ramya and I went to the decedent care to dress Varun up one last time - for his final journey.

Mommy couldn't hide her tears each time the signature tune of Jack Tripper's "Three's Company" airs on TV now - this piece was a special favorite of yours, Varun!! You would drop whatever you were doing and fix your eyes on the TV every time Jack's programme started or ended with the signature tune.

Varun, sweetheart, thank you for the memorable 18 months you blessed your mommy and daddy with - ours was the happiest family during those 18 months. You not being with us will not change that because you have left us a lot of precious happy memories that we will always treasure.



04-Jun-2005 (Saturday) 17:00 hrs (EST)


A funeral service for Varun will be held tomorrow (06/05) at 2pm, followed by cremation at the following address:

Mitchell Funeral Homes and Crematory
600 Saint Marys St
Raleigh, NC 27605
Phone (919) - 832 3760


04-Jun-2005 (Saturday) 03:30 hrs (EST)

Varun earned his angel wings at 02:28 hrs on Saturday to join his grandpa (my dad). Darling Varun was resting peacefully on mommy's lap, giving mommy the satisfaction of holding her precious darling for the first time in 47 days.

In the midst of our grief and loss, Ramya and I would like to extend our heartfelt gratitude to everyone who has been praying for Varun day in and day out. Without your support, we wouldn't have been able to face these tough days the way we eventually did.

Thank you, and Varun would be especially proud of the support you extended to his parents.



03-Jun-2005 (Thursday) 00:55 hrs (EST)


Please continue to keep Varun in your prayers !! Varun (yet again) needs your prayer more than ever before.



(PS: this is in response to Judy Lindahl's guestbook entry dated June 2, at 5:56pm).

Dear Judy, In response to your guestbook entry at 5:56pm, it is indeed true that Varun's condition took a (further) downward turn shortly before 4pm today - his oxygen saturation plunged from 96 percent to the high 60s and his nurse hit the panic button to summon the doctors and medical staff. They struggled for more than 15 minutes to stabilize Varun again. Those were nerve-wracking moments yet again for us.
Judy, thank you very much for sharing your experience with us.....i really hope this is a sign that God is watching over Varun - HE may or may not decide to return Varun to us, but it is very comforting to note that there are signs that God is indeed watching over our precious gift from HIM and that HE will take care of Varun whatever happens to him.

Varun's chest x-ray this evening was a little worse off than the one this morning.

Thank you very much to all well-wishers of Varun who have been a tremendous support to his parents in trying times like this. We also believe Varun can feel the support his parents are receiving from his well-wishers, which could be the reason that he continues to put up such a spirited fight. We are so grateful for your support. Please don't forget that there is still time for a miracle!!




02-June-2005 (Thursday) 01:30 hrs (EST)


There is no change in Varun's condition. We have still not achieved the anticipated increase in Oxygen levels (in the blood)....while the oscillator continues to pound 100 percent oxygen into Varun.

Please continue to pray for a miracle for Varun.




01-June-2005 (Wednesday) 03:00 hrs (EST)


Please continue to keep Varun in your prayers !! Varun (yet again) needs your prayer more than ever before.


Varun's condition remains the same. No change in the oscillator settings. His oxidation improved from 48 to 63 today, but the fact that Varun continues to be fed with 100 percent oxygen on the oscillator does not bode well for his lung recovery. However, we still hope the miracle giver is watching and will step in soon.

Varun appears to be at peace with himself. Each time the sedation wears off, he would start to wiggle and move his lips.

The end of yet another month and our heart sinks each time we think of what we would have been doing right now had the cruel Klebsiela bacteria not caught up with our little darling- Varun would have completed his 6-month (post transplant) study in the last week of May and we would probably be getting ready to drive back to New Hampshire now.

Instead we find ourselves staring at a future that may not have our little pumpkin with us - a future devoid of the 'miracle' baby God had given to a proud couple 17 months ago!

Recently, many times i have woken up in the morning thinking that all this is just a bad dream!! And it does take a while for the awful truth to sink in each time.

Oh sweetheart, if only we could hug you one more time to say goodbye, if you must go.

Or have you already said your goodbye on May 12th, the last time we saw you open your eyes, when you lifted your jittery hand to touch mommy's face? Mommy and daddy thought you were trying to tell us that you would be alright and would come back to us soon. Please say that is indeed what you tried to tell mommy.......





31-May-2005 (Tuesday) 01:20 hrs (EST)






There is no apparent change in Varun's condition, in terms of the oscillator settings and the oxidation. However, there is no worsening either.

Ramya and I met with the doctors today to discuss the options available to us with regards to Varun, since their conclusion now is Varun's lungs are very sick. It was a very difficult 1 hour session that we sat through with them....discussing options that we wish no parent would ever have to go through for their dear child.

Going by the difficulties Varun faced in the early hours of Monday morning, at first it looked as if we may have to make a decision on Varun by the end of the day Monday. However, since his condition did not worsen during the day, we decided that we would rather wait, irrespective of what the doctor's thought.

Many of our friends and well wishers have helped us today to achieve a few things that we wanted for Varun. Sumathi, Geetha and their families and friends arranged for a Hindu priest to visit Varun at the hospital and offer prayers and blessings for Varun. Ramya and I consider this a very important deed for our little darling, so thank you very much to all who made this possible.

Maureen Kester, Shilpa, Heather (Gracie's mom), Geetha and her son, and Sridhar visited Varun today. Also, my brother Tarun and my sister-in-law Divya are here today. A very good friend of ours, Akhil and Rajany from N.Y. also came down (they were visiting in Virginia this long weekend when they heard that Varun wasn't doing too well) .

In the absence of a miracle, we believe that God will guide us in making the right decision for Varun, however tough it may be.....

And a special word for the Social Worker team at the Pediatric bone marrow. Marion Kalbacker has a wonderful team that is so caring for the needs of patient families like Varun's. Thank you Marion and your team!!



30-May-2005 (Monday) 05:00 hrs (EST)

The bronchodilator Aminophylline did not help. Next they tried Tham solution (used chiefly to correct metabolic acidosis). At the same time, a chest x-ray revealed that the left lung had a new problem....the left lung appeared to have collapsed. This was really disturbing because the x-ray taken 8 hours ago did not indicate this was coming. At this point the doctors said that it is a sign that the lungs are now failing to oxidize well and that the oxygen level will fall gradually, at which point we may have to make THE DECISION regarding continuing varun's life support. We now had a situation wherein the CO2 level was back to normal but Varun's oxygen level was now dropping !!

Varun was bagged one more time, in the hope that the added pressure from bagging could clear any mucus blockage that could be causing the left lung to collapse. As soon as they did that, his oxygen level improved. It is still not back to where we want it, but hopefully if this improvement continues, we should get there.

However, Dr. Parikh stopped by just now to talk to us.....he hinted that this development only helps to buy Varun some more time - underscoring the fact that Varun's lung continues to be very sick.
We'll probably leave that to God to decide which way he wants to guide Varun - back to his hopeful parents, or take him to his heavenly abode.

Mommy and Daddy loves you so much, sweetheart. We are still holding out hope for a miracle.


29-May-2005 (Sunday) 23:55 hrs (EST)

As a last ditch effort, they decided to check if the CO2 was accumulating due to asthmatic reasons (which is difficult to determine while Varun is on the oscillator). They took him off the oscillator and started bagging him (ie. pumping oxygen by hand) - at which time they could clearly hear Varun weazing. Varun was immediately given Albutrol and then switched back to the oscillator. Once on the oscillator, they started a bronchodilator (ie., opens the lung passage) drug called Aminophylline. Only time will tell if this latest attempt will help.

Earlier today our cousin Sudhin visited us from Chicago. Sushand and family had returned to Connecticut yesterday. Gracie's mom Heather and Sumathi and Geetha too came to check on Varun today.

Thank you all for visiting us personally. Ramya and I really appreciate it.



29-May-2005 (Sunday) 18:20 hrs (EST)


Please continue to keep Varun in your prayers !! Varun (yet again) needs your prayer more than ever before.


Varun's CO2 level did drop to normal levels last evening, but this morning again it started to climb and the doctors are running out of ideas to stabilize his C02 level. They say it is an indication that Varun's lungs are very sick and deteriorating further. His pH level is dropping because of the higher C02. If the pH stays low for longer period, his other organs will start to fail.

It was so difficult to hear this grim outlook from Dr. Parikh, though he spoke to us as a good friend too.


Earlier this morning, seeing the increasing CO2 level and with Varun trying to move his body a lot (a sign that the sedatives were not having much effect on Varun), they struggled for more than 3 hours to try to get the right combination of new sedatives to calm him down, hoping that his movements were causing the CO2 levels to climb. Though they eventually managed to calm him down, the status of his CO2 did not change. It continued to stay high, much to their surprise.

God brought Varun back from the brink of death twice already....we are still holding on to our hope that God will not fail our little darling this time. Please continue to pray for a miracle for Varun...it now appears that only a miracle can save our precious gift from God that Ramya and I waited 7 long years for.



Quick Update: @ 2:30pm

Varun's high CO2 continues to pose a serious concern. Though oxidation is good, the oscillator is unable to get rid of Varun's CO2, as a result the pH value also is dropping.
"There is nothing more we could do now..." is what we continue to hear from the doctors, but Varun has heard this before and proven them wrong several times during this ordeal.

Please continue to pray for our little darling to overcome the latest concern.



27-May-2005 (Friday) 23:30 hrs (EST)




Today has been a rough day for us. Last night at 7pm, and again at 3am this morning Varun's right lung developed pneumothorax. Each time a surgeon had to reinsert/reposition Varun's chest tube to get the air out.
The chest x-ray this morning showed the lungs were looking a little better than yesterday.

Given the recent episodes with pneumothorax, during the morning round today the doctors decided to try Varun on a jet ventillator that works in conjunction with a regular ventillator. (Jet ventillators are typically used for newborns - i believe it can be used only for patients who weigh less than 12 Kg. or so).

A couple of hours after starting on the jet ventillator Varun's CO2 began to increase. From the high 80s it slowly edged into the 120s......at this point the respiratory therapist made changes to the jet ventillator. Unfortunately it didn't seem to help because the CO2 level continued to climb....140s...150s....and into the 160s, until they decided to discontinue the jet ventillator (after running for 4 hours) and switch back to the oscillator. Within a few hours of the switch Varun's CO2 was brought under control.

Today also marks 40 days since a wicked infection dealt a cruel blow to an innocent child whose immune system had just begun to show signs of improvement. Of those 40 days, Varun has been lying (heavily) sedated for 38 days. Words can't express our grief at seeing our only child in this helpless state. All we can do is hold his hand and caress his forehead, massage his little feet - all the while patiently looking forward to the day when he can open his eyes and to hear his voice again.

Until then, Ramya and I try to find comfort in recounting the beautiful memories that our little Varun has bestowed upon us - memories that lodge forever in our minds.

Oh our little pumpkin - if only we could hug you again like we always did before....we miss your sweet smile that greeted us every morning when you would come crawling into our arms as fast as those little legs could carry you.

Please hug your children and let them know how much you love them. Ramya and I can only pray to God to spare Varun and give us a chance to hug him everyday - to let him know how much we love him and how much he means to us, and that we will always hold him close to our hearts.


27-May-2005 (Friday) 01:45 hrs (EST)




In the evening (of 05/26), Varun had another incident of pneumothorax - which we were alerted to by the rising level in CO2 and a follow up chest x-ray which confirmed the penumothorax. This was surprising, given that the chest tube was still in place to take care of such air leaks.

A surgeon was called in and upon closer examination it was noticed that the chest tube had moved from the original position - upon correcting the position of the chest tube, Varun's CO2 level dropped to acceptable levels. (Before the real reason for the 2nd pneumothorax was determined, we were beginning to get worried that the increased air leak could be a sign that Varun's lung was deteriorating further).

Oscillator settings are:
Oxygen : 60
Amplitude : 45
Pressure : 27

Ramya's cousin Sushand, his wife Rajeeta (who is 8-months pregnant) and Varun's 3-year old cousin Rhea gave us a pleasant surprise when they turned up this evening after driving over 600 miles from Connecticut. They will be here for the next couple of days. Thank you Sushand and Rajeeta (and Rhea) for taking all that trouble to come and see Varun!!

We hope that the steroids will help Varun's lungs to heal enough - if it doesn't, probably there is nothing else that can be done. So please pray for the steroids to really heal Varun's lungs because this could be our little darling's last chance at life. Knowing the kind of fighter he has been all his life, we are still hopeful that Varun will indeed survive.




26-May-2005 (Thursday) 13:45 hrs (EST)





The chest x-ray this morning indicated the presence of air (essentially a leak) in the chest outside the right lung. Called Pneumothorax, it could be the result of prolonged ventillation, or a viral infection and can cause the lung to collapse. Fortunately, Varun did not show any signs of distress overnight (in other words, he was pretty comfortable on the moderate oscillator settings that he was on already) and the air leak was only evident in the chest x-ray. Immediately Varun underwent a procedure to place a chest-tube on the right lung that would help to suction the air out. The chest-tube will probably stay for a few more days.


Chances of developing pneumothorax on a High Frequency Oscillator is very low - unless the air leak was caused by a viral infection. For this reason, a culture has been sent to test for adeno virus. We hope this development doesn't point to a further deterioration in the condition of Varun's lungs.

Apart from this incident, Varun had a fairly comfortable evening yesterday.

Please continue to send out healing thoughts for Varun.



25-May-2005 (Wednesday) 14:10 hrs (EST)


Please continue to keep Varun in your prayers !! Varun (yet again) needs your prayer more than ever before.


Another stable day for Varun... the chest x-ray is a little better for the first time in 4 days. We have been hoping for a positive trend on his chest x-ray and lets hope this is the beginning.

Varun's heart-beat is on the higher side (160) today. It has been gradually increasing from 120 since yesterday evening. It is possible that he is in some pain which also can affect the heart rate. They are planning to give him Torodal to see if it helps to keep the heart rate in check.

Talking to the ICU attending physician, he doesn't think Varun's infection is bacterial. He is leaning more towards a fungal infection - unfortunatly no blood cultures have turned positive for anything so far, which is very frustrating. We hope the improvement in the chest x-ray is due to the infection going away and not because of the weaning off on the oscillator.

Current settings on the oscillator:

Oxygen : 44 percent
Amplitude : 42
Pressure : 27

(some of these parameters are higher than they were yesterday....unfortunately, they have had to tweak these parameters to compensate for CO2 build up or the drop in oxygen saturation when Varun starts to wiggle).

Ramya and I appreciate your healing thoughts for Varun and for your continued support for us.


24-May-2005 (Tuesday) 14:15 hrs (EST)





Varun has made some progress on the oscillator settings. The oxygen was weaned from 69 percent to 42 percent (anything less than 50 percent is considered less toxic for the lungs). The other oscillator parameter that saw improvement is the amplitude (this is a reflection of how well the CO2 in his system is being cleared by the oscillator).

They started weaning off the main oscillator parameter, the "mean pressure", only today. After stayiing at 30 for 2 days, it is marginally down to 29 this morning. (target would be around 18).

Oxygen : 42 percent
Amplitude : 36
Pressure : 29

The chest x-ray continues to remain the same. Because a chest x-ray is not always a true reflection of the condition of the lungs at the time the x-ray was taken (due to the lag), it gives us hope that the improvement Varun made yesterday (in terms of the ventillator settings) will probably start showing in the x-ray in the coming days.

Thank you for praying for our little darling.... we are beginning to see some signs of improvement. Varun needs to sustain this improvement and at the same time his lungs also should heal enough to be able to transition to a conventional ventillator. With the help of your healing thoughts, he sure will!



23-May-2005 (Monday) 16:00 hrs


Varun's chest x-ray this morning continues to show the same amount of damage as the one from yesterday did - which according to the doctors is very concerning.

The Nitric Oxide therapy continues to help increase the oxygen level in his blood.

Current oscillator settings are:

Oxygen : 69 percent
Amplitude : 45
Pressure : 30

Please continue to send healing thoughts for Varun.



22-May-2005 (Sunday) 22:00 hrs (EST)



Please continue to keep Varun in your prayers !! Varun (yet again) needs your prayer more than ever before.


An Echo Cardiogram (to provide functional data about Varun's cardiovascular status) was performed this afternoon to determine if they could find any heart related issues that could explain the sudden turnaround in Varun's condition Saturday evening. The echo showed no abnormal findings, though.

A relatively small improvement was made possible to Varun's oscillator settings today. At this juncture, any positive development, however limited in scope, is a step in the right direction. The current oscillator settings are still on the higher side, reading as follows:

Oxygen : 80 percent (down from 100 percent yesterday)
Amplitude: 50 (down from 60 yesterday)
Pressure : 30 (down from 33 yesterday).

It would be a big relief if the chest x-ray tomorrow morning doesn't show any further deterioration of his lungs. Please pray that Varun's lungs does start improving soon.

Thank you for your continued words of encouragement. The fighting spirit of this little champion and your prayers for his recovery gives us the strength to overcome the many challenges which we are encountering in this long road to recovery.




22-May-2005 (Sunday) 12:00 (EST)






The chest x-ray this morning has dampened our hopes.

Varun continues to be in a critical state. Last night the oxygen saturation (as seen in his blood gases) was very concerning (around 50 percent). To be able to reduce the oscillator settings, the oxygen saturation should be high - in the absence of that, there is nothing they could do.

The PICU attending physician (Dr. Kern) decided on 2 things to see if they would help:
1. Increase his blood pressure medicine (dopamine and milrinone) in the hope that increased blood circulation could help the exchange of blood gases.
2. If the above doesn't work, use Nitric Oxide to try to open Varun's lungs - this will increase the oxygen exchange.

They started on the blood pressure medicines at 2 am, but that didn't help. Finally at 5am they went ahead with the Nitric Oxide. In 10 minutes, Varun's oxygen saturation began to climb up. We thought this would be a step in the right direction - but the chest x-ray this morning indicated that Varun's lungs have worsened. They don't know what it is due to. Either :
1. a new infection.
2. an old infection which just wouldn't go away completely.
3. scarred areas in the lung.
4. collapsed areas in the lung.
5. other reasons.

At times it is very difficult to imagine what Varun must be going through medically. He is a true fighter, inspiring his parents not to lose hope, and inspiring many of you who have been following his progress so closely.

Varun has rebounded several times in the past, which also gives us hope. Please continue to pray for a miracle for Varun.




21-May-2005 (Saturday) 22:15 hrs (EST)


Varun developed breathing difficulties while on the ventillator around 3pm causing not only his oxygen saturation to drop to the low 70s, but also a drop in his blood pressure and heart rate. By giving him extra fluids, they were able to get his blood pressure and heart rate back up to normal levels, but his oxygen saturation refused to budge beyond 84 percent (typically it should have gone back to high 90's).

After about an hour, Varun's oxygen saturation again began to drop to the mid 50s. At this moment, the only thing left to to try was to put Varun back on the oscillator, which they did immediately. Dr. Prasad also told us that if Varun's oxygen saturation does not improve after the transition, then there was nothing else they could do.

After the transition, his oxygen saturation didn't budge - giving us extremely nervous moments. Finally, after about half an hour, it began to climb gradually. By this time Dr. Kurtzberg also arrived. (It is always a big relief to see Dr. Kurtzberg at trying moments like this). Essentially Dr. Kurtzberg and Dr. Prasad told us the same thing regarding Varun's chances in the wake of this latest setback. It appears that Varun's lungs are very sick....(they gave him 160 mg of steroid (solumedrol) in the hope that it can help his lungs).

Varun continues to be on high oscillator settings.

We as his parents, and you as his well-wisher, already know what prayers can do for Varun and others. He has bounced back several times in the past month - and we are hopeful that God will help Varun successfully fight this latest setback with the aid of your prayers.




21-May-2005 (Saturday) 17:30 hrs (EST)

Please pray for Varun...our little darling's condition deteriorated suddenly an hour ago....we are hoping that God will save Varun yet again, with the help of your prayers.
God, Please save our little one.


20-May-2005 (Friday) 23:50 hrs (EST)


Varun transitioned from the oscillator to a conventional ventillator later this evening. This is indeed a very important step and hopefully he will continue to do well and eventually come out of the ventillator soon.He had a fairly good day today, though he did 'fight' with the oscillator on quite a few occasions by wiggling too often.

Today also marks 1 year since Varun was diagnosed to have a blood related disorder. This day last year, at 5 months of age, and at the end of more than a month of observation, Varun's pediatrician ordered a blood test to help determine why he was not gaining weight. Later that evening they surprised us by asking us to meet with them urgently - only to break the news that they couldn't explain the abnormal blood results that had just arrived. The pediatrician adviced us to take Varun to Children's Hospital in Boston for further evaluation - if possible that very evening.

As we drove to Children's Hospital that night, we recalled that Ramya had lost her young brother at 18 months of age (back in 1978) due to a blood disorder that was characterized by an extremely low platelet count and frequent infections. When the doctors at Children's Hospital heard about the family history, they immediately suspected Varun's disorder could be Wiskott Aldrich Syndrome (WAS) because Varun also had eczema (a common symptom of this disorder). A week later, they confirmed Varun's blood disorder was indeed WAS.

Since then we have learned to experience the special world of special families that care for children with special needs.



19-May-2005 (Thursday) 23:45 hrs (EST)


Varun continues to make good progress- the settings on the oscillator did come down again today:

Oxygen : 40 percent
Amplitude : 30
Pressure : 20

The above readings are pretty close to the settings that will allow a transition from an oscillator to a ventillator. Hopefully tomorrow they can make the switch.

No new information on the status of the Staph bacteria that Varun had turned positive for yesterday.

Thank you very much for the extra prayer for Varun's safety after the unfortunate accident two days ago. Your prayers continue to give us hope that God will protect Varun and that he will soon be on the road to recovery.




18-May-2005 (Wednesday) 21:50 hrs (EST)


Exactly a month today since Varun got admitted (on 04/18). The good news today is Varun's chemistries are back to where it was before yesterday's mishap. It took about 30 hours to recover from the terrible mistake -assuming there will be no other long term impact on Varun's health from yesterday's negligence.

Though a CT-scan of Varun's brain would have been appropriate yesterday, it wasn't possible because Varun is still on the oscillator. The risk of taking him to a different floor (for the CT-scan) far outweighed the benefit. They would consider getting a CT-scan done only when Varun's life-support is downgraded from an oscillator to a ventillator.

And if Varun continues to do well, they may take him off the oscillator and put him on the ventiallator in the next day or two. We did see quite a significant improvement in his oscillator settings today:
Oxygen : 44 percent
Amplitude : 33
Pressure : 24

Varun's blood culture from yesterday turned positive for Staph bacteria. Being a preliminary result only, it remains to be seen what else they can find out (about the specific nature of this bacteria) in the coming days.

He was immediately put on Vancomycin to treat the Staph bacteria.

The chest x-ray from the last 2 days have looked pretty good (with the dehyrdation from excessive glucose yesterday, its no wonder that the fluid build-up disappeared - however, this is not how the doctors would have liked to clear the extra fluid!!! During yesterday's episode, the net loss of fluid from Varun's body was close to 1 litre.



17-May-2005 (Tuesday) 22:20 hrs (EST)


Its been a horrible day for us today. A mistake last night caused the TPN to flow at a rate (120cc/hour) that was 6 times the prescribed rate (20cc/hour). As a result, the TPN (an intravenous nutritional fluid) bag which holds 24-hours worth of liquid in it, emptied inside 5 hours. Varun's glucose level spiked from 200 to an extraordinarily high 1100 in the early morning hours today.

An intermediate glucose test around 5am had alerted the team to the rising glucose level, but nobody could explain what was causing it. The nurse wasn't aware that she had accidentally set the IV-pump to push 6 times faster so naturally she kept recording on the log sheet that Varun was getting TPN at the prescribed amount of 20cc/hour. The team of doctors would only look at the log sheet - they are not going to check the IV-pump to verify what the nurse had logged.

Two early hints that could have helped them nail down the issue went unnoticed:
1. The IV-pump was emptying the TPN bag at a very fast rate.
2. Varun was passing an excessive amount of urine during this period - an amount that was very very high and not proportionate to the amount of fluid that his kidney was expected to pump out, even if you account for the extra fluid retention over the past few days.

While the sudden increase in glucose level baffled the medical staff, at 7:30am the nurse taking over for the morning shift noticed that the TPN bag was close to being empty (she knew that the TPN bag should have lasted at least till midinight today). She then checked the settings on the IV-pump and suddenly everything started to fall in place - the setting was too high, explaining the spike in Varun's glucose level.

Patient's families are not allowed to visit the PICU between 7am and 10am when the shift change takes place and the doctors do their morning rounds. When we got in at 10am, the nurse (who found out the mistake) had already alerted us to the problem, but none of the doctors were available to explain to us what the consequences are for Varun because the bone marrow team and the ICU team of doctors were still in a conference trying to evaluate the impact of this terrible mistake on Varun. We felt so helpless that Varun (who continues to be in a critical state) was subjected to such a high glucose level spike and dehydration that was totally uncalled for. When glucose in your blood exceeds a certain limit, it acts as a diuretic (ie., a substance that helps to remove water from the body by assisting with urine formation), resulting in excessive loss of fluids during this period. Also his sodium level shot up to 162 (normal: 134-146).

Dr Cheifetz, chief of the PICU, though not scheduled to be on duty today, took control of the situation and together with the bone marrow doctors worked out a plan of action for Varun.

Shortly thereafter his team came over and explained to us what exactly had happened, what it means for Varun and what their plan of action is. To our concern if the high level of glucose would affect Varun's brain, they assured us that in most likelihood it wouldn't. Their first priority would be to get Varun's chemistries back in line, together with the glucose levels.

Judging by Varun's progress this evening, the doctors are optimistic that he would recover from last night's episode very soon, latest by tomorrow.

Dr. Kurtzberg stopped by late in the evening (together with Dr. Parikh) to see how her tough fighter was doing.

Please continue to pray for our little warrior who has had to endure so much in such a short period. And learning from our terrible experience today, please pray to God that he will guide all the doctors and nurses taking care of all our loved ones to do the right thing at the right time!




17-May-2005 (Tuesday) 01:15 hrs (EST)


Please continue to keep Varun in your prayers !! Varun (again) needs your prayer more than ever before.


Not much change could be made to the oscillator settings since my last update, other than the oxygen coming down from 55 percent to 51 percent. The reason we couldn't improve on the oscillator settings was due to the Potassium levels going down considerably (which in turn is caused by the large amount of urine output). This sends the pH level much higher, and in turn the CO2 also shoots up. The pH level can be controlled by infusing more Potassium (and the CO2 would then take care of itself). So until the Potassium level stabilizes, the oscillator settings will stay put.

Probably this is not a big disappointment because the delay is not caused by respiratory issues, but due to his chemistries being a little too high, for reasons that we already know (ie., the high urine output).

Earlier today Varun's blood samples were sent to test for 2 viruses: EBV and Adeno virus. It could possibly take 2-3 days to get the results back.



16-May-2005 (Monday) 15:15 hrs (EST)




Varun continues to remain stable. His improvement in the last 12 hours hasn't been as significant as the previous 12 hours. Fortunately his kidney continues to do a good job. Some numbers corresponding to his liver functions were a little high so this needs to be controlled.

The oscillator settings could be reduced only a little bit: Pressure is down from 26 to 24 (good); Oxygen was initially brought down from 57 to 50 (good), but then had to go up to 55 (not so good) because his blood gases indicated a higher CO2 retention.

Varun got the last of his high doze of steriod (solumedrol 100mg) at 6am today. Hopefully the steroid has done its job and will help him recover soon. No more steroid also means no further blood glucose level spikes. (His blood glucose was around 220 this morning, down from 400 (yesterday). Typical value is around 150).

We are still hopeful our little darling will recover from this latest setback.



15-May-2005 (Sunday) 11:45 hrs (EST)




Varun is showing some progress and has been passing a good amount of urine since my last update. This is extremely important to get rid of the excessive fluids in his body. Since then the oscillator settings have come down gradually - the oxygen is now set at 57 percent (down from 64 percent), the amplitude came down from 50 to 48 to 46 and now 43.

Instead of discontinuing Lasix, they doubled the doze of Lasix and started on a second diuretic at the same time to get Varun to pass more urine. It is difficult to determine which of these two is helping Varun.

Varun's blood glucose level spiked from 170 to 400, prompting the administration of insulin injected subcutaneously at first. This made no difference to his glucose level (probably because of the puffiness, it was difficult for the insulin to get into the main stream) - since then he is getting insulin via the central-line.

Overall the developments in the 2nd half of the day does look encouraging, thanks to the prayers of all his well wishers !!


15-May-2005 (Sunday) 13:15 hrs (EST)




A little progress for Varun...the percentage of oxygen he requires (while on the oscillator) was reduced from 69 percent to 62 percent more than an hour ago, and if the blood gases continue to remain stable, this would be a good step. On the other hand, if the blood gases show an increase (especially if the CO2 level increases), then they will have to rollback the change and go back to 69 percent.(Typically this is how a patient is weaned off the oscillator....reduce the oscillator settings in tiny steps, then monitor the blood gases...if the blood gases remain steady over a period of time, reduce the ventillator settings again and so on..).

Still no signs of an infection from any of the cultures drawn. Yesterday evening the doctors were beginning to lean towards the possibility that the current setback could be due to inflammation of the lungs, so instead of waiting till today morning, Dr. Kurtzberg decided to give Varun a very high dose (100mg) of steroid (called solumedrol, a steroid that has a wide range of use) to treat any possible inflammation in his lungs. Varun would receive this dose 4 times in the next 48 hours.

Most all bone marrow patients (and/or their families) are familiar with solumedrol for treating graft-versus-host-disease, and varun was getting around 3mg of solumedrol immediately after the transplant. When it is used to treat inflammation in a situation like this, the dose required is very high. We are hopeful that if not the antibiotics, then this steroid will definitely help Varun.

Last evening one of the test results returned negative for PCP pneumonia, a serious lung infection. This is a big relief because we could then discontinue Bactrim (used to treat pcp). One of the side effect of bactrim is Neutropenia ( low number of important white blood cells called neutrophils).

Despite the use of lasix to help him pass urine more frquently, Varun is still averaging only the normal amount of urine output. The chest x-ray from this morning does show more fluid retention, so the next course of action is to try a different diuretic instead of lasix.

Thank you to all of you who have been praying for little Varun and sending messages. Thank you for letting us know that you are concerned for our little darling just as much as Ramya and I are. With the help of your prayers, God will definitely save Varun again.




14-May-2005 (Saturday) 12:45 (EST)




Varun's condition continues to remain critical.

After the real bad chest x-ray from yesterday morning, the one taken at noon yesterday was a little better, and all subsequent chest x-rays have been identical to the one taken at noon - ie., no change. This is good in the sense that the condition of Varun's lungs hasn't worsened.

However, they haven't been able to bring down the oscillator settings in the past 24 hours, causing some concern, though the concern could be premature. Varun's blood gases are satisfactory, and his heart rate and blood pressure are all acceptable.

None of the cultures taken have shown any sign of infection yet. Don't know if that is good or bad - if infection is the underlying cause of the current setback, it would help to know that the infection is indeed covered by the antibiotics. On top of his current medicines, the latest setback has seen the addition of 5 new antibiotics and anti-fungals.

Often times the initial cultures tend to not reveal anything - we'll have to wait a couple more days to know for sure.

Dr. Szabolcs (the attending physician in the bone marrow unit for the weekend) said there is a buildup of fluid in Varun's lungs (from the medicines he received yesterday), so Varun will be on continuous lasix today to help him pass more urine. Lets hope as he gets rid of the fluid, the oscillator settings will improve.
If by tomorrow morning the lasix doesn't bring about significant changes, Dr. Szabolcs would start varun on steriods to treat the inflammation of his lungs.

Events of the last few days now appear to be a replay of Varun's fight to survive that we witnessed the week of 04/18. Fortunately, his kidney appears to work well now (hence no need for the Continuous Hemofiltration therapy, the research protocol that many believe helped him get rid of his fluids on that occasion when his kidney was not functional).

Please pray for Varun to fight off this latest setback like he did last 3 weeks with the help of your prayers.




13-May-2005 (Friday) 11:30 hrs (EST)


Varun's condition turned critical again early this morning.Not only did he have to go back on the ventillator earlier this morning, he is now being switched to an Oscillator.

Prior to all this, he was switched to a bi-pap around 4 am today when his oxygen saturation began to drop again. Around 8am they had to put Varun back on the ventillator after another drop in his oxygen saturation. And now the Oscillator.

At 10am Dr. martin filled us in with the results from the latest chest x-ray. In the last 36 hours varun's lungs had worsened dramatically (though several chest x-rays were taken yesterday, a chest x-ray has a lag with respect to what is really going on inside the lungs, so the real change in his lung condition didn't reflect clearly in the x-rays taken yesterday). They still don't know what it is....it could be due to aspiration in the lung (from the vomit Varun had several times on Wednesday evening), or some kind of pneumonia.

Dr. Martin added that he would be very concerned about Varun's condition over the next 2-3 days. Varun has been through this path before, and he did overcome those obstacles with the help of your prayers. Please continue to pray for our little darling....to give him the strength to keep fighting.....and to successfully overcome this latest setback.


12-May-2005 (Thursday) 23:45 hrs (EST)


Varun is back in the PICU. He wasn't doing very well in the evening, developing breathing difficulties again, together with continued high heart rate and low blood pressure. Dr. Martin spoke with the PICU team regarding doing a bi-pap on Varun, but the PICU team indicated that they would attempt a bi-pap on Varun only if he were back in the PICU. Their reason was that they have had some difficulties doing a bi-pap on Varun during his earlier stay at PICU, so they didn't want to take the risk of attempting another bi-pap outside the PICU facilities.

Varun seems to have settled down once he got back in the PICU. His BP is still high (131/101) but his heart rate is down from 185 to 155. His oxygen saturation also is very good, at 99 he is getting extra oxygen though).

I had mentioned earlier that Varun took notice of us today. At one point of time, when Ramya held her face close to his, he made a feeble attempt to raise his jittery hand to touch her face. It was a beautiful moment for Varun's parents- giving us so much happinesss, probably the most we have experienced in the last 3 weeks.



12-May-2005 (Thursday) 13:00 hrs (EST)


Varun was transferred from the PICU to the bone marrow unit (Room #5205) yesteday afternoon. He did pretty well for the most part of the evening; later he started developing severe withdrawal symptoms...he was trembling all over, was vomiting what looked like old blood (probably from the bleeding caused by prior intubations) and later in the night developed a fairly high fever of 38.9 and his heart rate was quite high at 180.

Also at one point it looked like his eyes were fixed, though it didn't last for too long. However, Dr. Martin has ordered an EEG ( a recording of electrical signals from the brain made by hooking up electrodes to the scalp) and a CT scan just to be sure that he hasn't had any seizure last night.

Varun is a little more alert than he was yesterday. He is beginning to notice us today. He continues to receive assistance from the heliox and oxygen. They had tried to wean his heliox earlier today, only to find his oxygen saturation going down, so the heliox had to be continued. The oxygen he was getting had to be increased from 1 litre to 4 litres. We hope this is not a setback as far as his respiratory function goes.

When Dr. Kurtzberg visited Varun last evening, she did indicate that it would take at least a week before we could tell for sure that Varun wouldn't have to go back on the ventillator again. (Until then we were thinking that if Varun could breathe on his own the first 24 hours post extubation, he would be safe. "Not so fast", according to Dr. K).




11-May-2005 (Wednesday) 11:45 hrs (EST)


Its now more than 22 hours since Varun has been breathing on his own (well, he is dependent on oxygen and the heliox too). They may discontinue the heliox soon. The oxygen will have to continue for a few weeks, as per my latest understanding).

They are already talking of moving Varun from PICU to the bone marrow unit later today. Though this is a sign of their confidence in Varun's ability to recuperate, we were a little worried if it was too early to move Varun out of the PICU today...maybe they should monitor him for one more day before transferring him out of PICU?

However, Dr. Martin (the bone marrow unit doctor) reassured us that Varun would be alright.

So, as it stands now, if Varun continues to do well, we will be back in the 5200 (ie., bone marrow) unit today.



11-May-2005 (Wednesday) 00:30 hrs (EST)


11 hours since Varun's extubation and so far he appears to be doing well. Though he is still sleepy, he does cough up occasionally, which is a good thing because it helps to clear his lung secretions. We could see him yawning a few times already!!

Even if he were to open his eyes, he isn't going to see us because of the effects of the heavy sedatives that lasted more than 3 weeks. (Sedatives change body chemistry, especially in the brain - Varun was taken off sedatives only yesterday after being dependent on them for more than 3 weeks; now that his body doesn't get sedatives anymore, his body's chemistry has to readjust again, and this leads to withdrawal symptoms).

Varun has begun to exhibit withdrawal symtoms like nausea, shakiness, restlessness and weakness. It will probably take a few days to get over these symptoms.

He continues to get Heliox while breathing- however this assistance isn't considered a big deal. It is typical to get some assistance when you are taken off the vent, and the heliox will be toned down tomorrow.

Thank you very much for keeping our little darling in your prayers.Ramya and I are very appreciative of your prayers and support. The truth is we haven't been able to reply to any of your messages you have been leaving on this website, but your thoughts and prayers, besides helping Varun to show signs of recovery, have also helped us stay positive in the midst of the trauma of the past few weeks.



10-May-2005 (Tuesday) 16:15 hrs (EST)


Varun was extubated around 1:45 pm today after the ENT determined that the swelling in Varun's airway had subsided compared to last week. However, they weren't too sure about his airway floppiness. The only way to tell is to let Varun breathe - and can only be measured in terms of how long he can breathe on his own.

Unlike previous extubation attempts, instead of oxygen they are giving Varun heliox this time, a mixture of 79 percent helium and 21 percent oxygen. Being very light, heliox is know to improve ventillation by reducing airway resistance.

Please continue to pray that Varun does well this time and doesn't have to go back on the ventillator. If this attempt fails, Varun's only option would be to undergo a traechostomy, for which he will need to be intubated again till Thursday because they won't be able to schedule his traechostomy until then.



09-May-2005 (Monday) 15:15 hrs (EST)

Quick Update:
Because they started weaning Varun off the sedatives a little late today, the ENT decided to wait till tomorrow to carry out Varun's examination. Hence no possibility of an extubation today.



08-May-2005 (Sunday) 22:45 hrs (EST)


A final attempt to extubate Varun is scheduled for tomorrow. First the ENT specialist (Dr. Greg Hulka) will determine if Varun's swelling on the throat has subsided or not. If it has, then they would go ahead with the attempt to extubate Varun.

Just to recap, at this moment there are two obstacles standing in the way of Varun's successful extubation:
1. The swelling on the throat.
2. Varun's airway appears to be floppy.

How far the steroid Decadron has helped to reduce the swelling will be known tomorrow when the ENT specialist (Dr. Greg Halka) examines Varun. If he determines that the swelling has subsided, he would give the green signal for the extubation attempt to go ahead.
Whether the extubation succeeds or not would then depend on the other obstable (floppy airway) being cleared. I believe it is difficult to determine beforehand the status of Varun's airway, short of letting him go through the motion of attempting to breathe on his own.

The big question that has been bothering Ramya and me in the past 4 days is, what do we do if the extubation attempt fails yet again. Putting Varun back on the ventillator would only do more harm to him since he is really on very low settings of the ventillator (meaning his lungs are pretty much in good shape) - instead they have suggested doing a tracheostomy (an incision into the trachea (or windpipe) to help with breathing) on Varun. (http://www.tracheostomy.com has a wealth of information on tracheostomy).

Please pray that Varun will recover enough to not need a tracheostomy. In the event that it doesn't work out the way we wish, ramya and i only have to look back to that day almost 3 weeks ago - on 04/19 to be precise, when the odds were heavily stacked against Varun's recovery - to realize that God has already performed a miracle for Varun. Honestly, Ramya and I cannot ask for anything more than our little darling coming back to us.



07-May-2005 (Saturday) 23:55 hrs (EST)


Ramya and I wish you a Happy Mother's Day!!

Varun continues to remain stable. Yesterday they had plans to get another bronchoscopy to extract culture from his lungs to determine if what they continue to see in the chest x-ray is something that needs to be treated. Eventually the pulmonary specialist decided against a bronchoscopy because the size of Varun's current ventillator tube was too small (4mm diameter). (Though Varun was originally intubated with a 4.5mm diameter tube, the swelling in his airway since has made it difficult to push a 4.5 mm diameter tube when his last extubation failed and had to be reintubated again- in the end they had to settle for a smaller size tube).

Had we been successful in getting his culture yesterday, we could have, over the weekend, found out any infection that would have helped us to intervene sooner (by giving the appropriate antibiotics). However, it is encouraging that Varun hasn't exhibited any symptoms of an infection thus far (ie., no fever, no change in his chemistries).

Today Ramya and I participated in the Rainbow of Heroes walk (www.rainbowofheroeswalk.org), an annual fundraising event for the Duke Pediatric Bone Marrow Transplant's Family Support Program. This is an event that we had originally looked forward to participate with Varun, so this morning we weren't too sure we wanted to be there without him. At the last moment we decided to attend so that we could release balloons for Varun. Sridhar (Sumathi's husband) also joined us in the walk. Sumathi and Sridhar have been a constant support to us ever since they heard about Varun last year while we were still searching for a bone marrow match for Varun.

We got to meet a lot of families who have been through or are currently in the transplant program. We carried balloons with 'get well' messages for Varun which were released at the end of the walk. Balloons are carried in honor or memory of children who have been through or are currently in the program. Some families build teams to raise funds for this program.

Cati's team (http://www.caringbridge.org/ny/caterinamarcus) raised over $24,000 to win the 1st prize for the highest fund raiser. Congratulations, Team Caterina !! If i heard the announcement correct (and did my math right), i think the top 3 fund raisers raised over $50,000 for this program. Steve and his team from Duke Red Cross (the team that conducted a bone marrow drive in the Duke campus late last year in honor of Varun) also participated in the walk today. Steve and his team raised over $10,000 for this program.

Finally, Varun was named the winner of the raffle for a beautiful Afghan. For details on the Afghan, please visit http://cancer.duke.edu/pbmt/rainbows/#raffle. Thank you to all those who entered Varun in the raffle. Dr. Kurtzberg made a touching announcement while revealing the raffle winner. And thank you to those of you at PBMT and other volunteers who helped in knitting this beautiful Afghan.
And congratulations to everyone who made this year's Walk a roaring success!!




05-May-2005 (Thursday) 21:15 hrs (EST)


Varun couldn't come off the vent today due to a couple of setbacks, one in the lung and the other in the trachea. Nothing major as far as we know, but something we could do without.

The Bronchoscopy was performed at 3:30pm, and it revealed quite a bit of swelling in Varun's throat, which practically blocks his airway especially when he clamps down anytime he is agitated.

Surprisingly, they had determined earlier in the day that attempting an extubation today was highly unlikely because of something they saw in Varun's chest x-ray this morning. They aren't too sure what it is, but i think it was a good decision to play it safe. We were only disappointed that nobody bothered to tell us of the advance decision not to extubate Varun.

The swelling seen in the bronchoscopy is positioned in the upper part of the throat. The steroid he was put on last 2 days should typically have taken care of such swelling. It could be that Varun needs a few more days to clear the swelling. The source of the swelling is still not clear - it could be from the ventillator tube rubbing against his throat, or from the infection he contacted 2 weeks ago...we probably will never know.

The steroids will continue until the next extubation attempt, which could be on Monday. We will have to keep a close eye on the daily results from Varun's sputum (ie., phlegm) cultures. (Once a culture is taken, they let it grow in the lab for many days. The idea is to see if any infectious bacteria grows anytime during the observation period).

Varun's CMV and RSV tests came back negative, which is a big relief.

It is too early to even think about tracheostomy, a surgical opening into the trachea through the neck to allow air passage, but the doctor wanted to make sure we understand the direction we are going in and the options available. This can help to bypass the part of the throat that has the swelling. They would probably have to resort to tracheostomy only if by mid next week the swelling doesn't go away completely. We only hope that Varun wouldn't need to undergo this procedure and that his swelling will clear by next week.

Please keep Varun close to your heart when you pray tonight and in the coming days....he is going through so much (like many other kids like him around the world must be going through). Your continued prayers will definitely help to heal him quicker - clearly evidenced by the miraculous recovery he made in the 1st two weeks.



05-May-2005 (Thursday) 13:00 hrs (EST)

After discussing Varun's status this morning , the PICU, Bone marrow and ENT physicians decided to go ahead with Varun's bronchoscopy and possible extubation immediately after (of course whether they extubate Varun today or not will depend on what they find during the bronchoscopy).
The procedure is scheduled for 3:30 pm today.

Please continue to pray for Varun so that he can successfully come off the ventillator and start breathing on his own and not have to go back on the vent again.





05-May-2005 (Thursday) 02:00 hrs


A fairly quiet day today. Early yesterday morning when his nurse gave him a sponge bath, Varun appeared very agitated. Increasing the dose of the sedatives he already was on did not make a difference, so they had to resort to a different kind of sedative, which calmed him down immediately.

Later in the evening, around 8pm, when he was more awake, the thought of the tube in his throat must have upset him so much that he wriggled enough to send his oxygen saturation down to 60 percent, prompting his nurse to hit the 'distress' button. However she managed to pump in oxygen and his oxygen saturation immediately went back up to 95 percent.

This latest incident has prompted the ICU doctor to rethink the strategy for tomorrow. He is probably thinking that Varun may not be ready for extubation tomorrow, though we don't know yet what precisely caused the oxygen level to drop to 60 percent. He will discuss this first thing in the morning with the bone marrow team, the ICU team and the ENT (who is scheduled to perform bronchoscopy on Varun tomorrow).

When Varun gets angry, by nature he stiffens his body, arching his back with all the tension he can muster to express his displeasure. We think this behavior is probably being repeated during his struggle with the vent tube.

Up until now since Varun got admitted, we were fortunate to have a room in the bone marrow (ie., 5200) unit at our disposal. Today we vacated the room for a bone marrow patient who needed urgent care. If you happened to call us at the 5200 unit before, please note that the number (x5213) will no longer reach us.

The Pediatric Bone Marrow unit (also known as the 5200 unit) is specially equipped to protect immunocompromised kids. We hope that when Varun is ready to leave the ICU, he will have a room available in the bone marrow unit.



03-May-2005 (Tuesday) 23:40 hrs (EST)

We were deeply disappointed with the setback today when Varun had to be put back on the vent.

Only last night we were so thrilled when Varun partly opened his eyes in response to our voice as we spent some time talking to him. He couldn't focus on anything because he has been heavily drugged in the past 2 weeks, but nevertheless it was a beautiful experience to see our little darling finally opening his eyes, at least partly. His hands were trembling every time he woke up, again the effect of heavy sedation.

Varun started on a low dose of sedatives when he was put back on the vent today.

Nothing is planned for tomorrow, but on thursday they will attempt to extubate Varun again (ie., remove the ventillator tube). Only this time, an ENT (or a lung) specialist and his team will intervene to determine the cause of Varun's breathing difficulties. At the moment, they suspect it could be something to do with his airway - for this reason, they are likely to perform a bronchoscopy (which allows to see inside the airway) on Varun.

oh, i forgot to mention this. They also suspect the swelling in his throat (caused by the use of ventillation tube in the last 2 weeks) could be hindering the passage of air, so they started Varun on a steroid called Decadron (it helps to reduce inflammation).

Please continue to keep Varun in your prayers, as you always do. We are hoping that what happened today is only a minor setback on his road to recovery.


03-May-2005 (Tuesday) 14:20 hrs (EST)

Varun is going back on the Ventillator.

Around 1:30pm he developed breathing problem again (despite the bi-pap assisting him) and his oxygen saturation dropped to 77 percent. The decision was made to put Varun back on the vent, and we were asked to leave the room.

We are not sure what is causing the breathing problem. Hopefully lets pray that Varun will recover soon and will not have to stay on the vent for too long.



03-May-2005 (Tuesday) 13:20 hrs (EST)


Varun was extubated this morning just before 10am.

That he is now breathing on his own is another big step on his road to recovery. We hope he will be able to continue breathing on his own - sometimes patients will breathe for a few hours before becoming exhausted and will have to be reintubated.

Varun's breathing isn't quite normal yet. The CO2 level is slightly on the higher side. He does appear to have some obstruction in his lungs, possibly lung secretion. If so, he will have to cough it up himself.

While writing this journal, just now i got called back to PICU because Varun's oxygen saturation plunged from 98 percent to 60 percent - prompting his nurse to hit the 'distress' button calling for help. The staff went to work quickly and put Varun on a bi-pap (a bipap is a notch or two below a ventillator) which assists in his breathing. He appears to have developed a swelling in his throat, a side-effect of ventillation. They will soon take a look at his blood gases. A chest x-ray also was taken immediately.

Please pray that Varun will do well and will not need to go back on the ventillator again.



02-May-2005 (Monday) 13:15 hrs (EST)

Varun's surgery to place the central line a second time was completed this morning and he is now back in the PICU. When Varun had got the central line placed the first time (as an out-patient, 6 months ago), he had to spend time in the recovery room immediately after the surgery. Because he is now admitted to PICU, the recovery room for PICU patients is the PICU itself) so, immediately after the surgery they could move him back to PICU again.

According to the surgeon, the procedure went very well. Varun did very well, especially with the anaesthetic. Earlier we had been told that it is riskier to give anaesthesia to a child who is still in ICU as opposed to a child who is not in ICU. This was our main concern this morning, until we were told that Varun's surgery went well and was back in PICU.

Dr. Kurtzberg visited Varun soon after. She had wanted to get the g-tube (ie., feeding tube) also placed on Varun today while they were getting the central lines in, but the ICU doctors disagreed. Varun will probably have to go in for another surgery (maybe a month later) to get the g-tube in.

Thank you everyone for praying for little Varun while he underwent surgery.

Now that the central line is back, the two temporary lines (inserted on either side of Varun's groin area 2 weeks ago) will be pulled out later today. (These temporary lines have a much higher risk of infection than a regular central line that is placed on the chest, hence the urgency of today's surgery to get the central line back in).

We are now eagerly waiting to see varun off the ventillator completely. Hopefully in a day or two.....


01-May-2005 (Sunday) 23:40 hrs (EST)

Quick Update: We just learned that Varun's surgery for the central venous lines (hickman's catheter) is being scheduled for the morning tomorrow (05/02). Please pray for our little trooper so that he can tolerate anaesthesia and surgery very well.

01-May-2005 (Sunday) 21:20 hrs (EST)

Hope you all have had a very good Weekend.

Varun's condition continues to remain stable. Occasionally his blood pressure tends to climb when they try to wean his sedatives. His kidney continues to perform well, fortunately.

My brother, Tarun, visited us from Maryland this weekend. Ramya and I are very appreciative and comforted by his visit. Thank you for coming down to be with us this weekend, Tarun.

The next step is to get Varun off the ventillator, to either directly let him breathe on his own, or to seek the help of a bipap before letting him breathe on his own. Before we get to that, the bone marrow doctors are anxious to put back Varun's central line, which requires surgery. The thought is, Varun will definitely need the central venous line going forward and since he is already intubated now, it would be much easier on him to get the surgery (for the central line) done now rather than intubating him (again) later just for the surgery.

A doctor from the surgical team visited Varun this evening to check if he is well enough to go into surgery.

The other day when Ramya placed her finger in Varun's tiny hand, she could feel Varun (feebly) squeezing her finger. Earlier Dr. Kurtzberg had warned us that once Varun wakes up, he will be very weak from the heavy sedation of the past 2 weeks, and that it will take several physical therapy sessions to get Varun back on his feet again.

Hopefully tomorrow we'll get to know the plan for Varun's surgery and the intended extubation.




28-April-2005 (Thursday) 23:50 hrs (EST)



After a rough day yesterday, Varun's health remained stable today.

There is a general belief that one of the reason Varun's condition improved in the first week was probably because of the "Continuous Hemofiltration" (or CVVH) therapy. Having said that, last night we were very frustrated with the CVVH machine because it started to malfunction. Fortunately, Ramya noticed the malfunction and brought it to the attention of the ICU nurse.

The CVVH machine performs the function of the kidney - blood drawn from the patient is passed through this machine where the toxins and unnecessary fluids are filtered out before blood is returned to the patient.

This machine had been running for more than 6 hours before the malfunction started. Ramya noticed that in 10 minutes the machine had already drawn enough blood from Varun what should have taken it 1 hour to draw as per the settings on the machine. When she brought this to the attention of Varun's nurse, the nurse wasn't convinced at first - she finally got convinced after she reset the machine (to remove 0 ml of fluid), only to find the machine was still removing quite a bit of fluid !!! Also Varun's BP dropped from around 150 to 90 in this short period. The CVVH machine was shutdown after a few minutes of tinkering with it didn't help to restore the normal rate of flow.

Shutting down the machine now presented another dilemma. About 100-150cc of Varun's blood was left behind on the CVVH machine. No one present at the time happened to know how to get this blood back into Varun's system. When someone found a way to push the blood into Varun, their attempt would fail every few minutes with an error related to the pressure of the machine. Finally they gave up because Varun's blood pressure had begun to climb back up from 90 to 140, with a little more than half of the blood still left behind on the CVVH machine.

Honestly, we do feel the CVVH therapy has played a significant role in Varun's recovery, but when it started to malfunction, it had the potential to wipe out all the benefits Varun had reaped thus far.

Today the doctors concluded that the fluid collected in the brain (as revealed by the ct-scan yesterday) isn't anything to worry about for now, but needs to be monitored in due course. They remarked that Varun's ct-scan taken 6 months ago (prior to the transplant) also did indicate some amount of fluid collection.

The doctors are now thinking that the reason for yesterday's low heart-rate was probably due to the high dose of sedatives administered to Varun when he got agitated yesterday morning while his respiratory tube was being repositioned. They changed the sedative yesterday upon which Varun's heart-rate stabilized.

Please continue to pray for Varun - and thank you everyone for the encouragement and support you have provided us.

27-April-2005 (Wednesday) 23:00 hrs (EST)


We had been warned (when Varun got admitted to the ICU last week) that the road ahead could still be bumpy. By Gods grace, he had a fairly smoooth progression until this morning when things started to go wrong.

(During the incident below, we were told that Varun had opened his eyes and looked around, and when he felt the tube down his throat, he got very upset. This was the first time Varun had opened his eyes since being rushed to the ICU 8 days ago....we really missed it, only because we weren't allowed to be there with him at the time).

The respiratory team, while trying to change the dressing that holds the respiratory tube, accidentally pushed the end of the tube to the right side of the lung. An attempt to lift the tube back up caused the tube to be pulled too far up, causing Varun's heart rate to plunge. Immediately they pulled the tube out completely, giving Varun his first attempt to breathe on his own (this was ok, because they were anyway thinking to get Varun off the oscillator by the end of the day today and let him breathe on his own).

But Varun was just not ready for it. He started developing breathing problem yet again. They next made an attempt to oxygenate him, but that didn't work either. Finally they were forced to put him back on the ventillator. (We weren't with varun when this happened....parents are asked to leave the room when they attempt such things). The good news is, Varun stabilized as soon as he got onto the ventillator.

But not for long. Soon something else was beginning to grab the attention of the medical staff : Varun's heart beat was beginning to drop again, while every other parameter remained stable. His bp looked good, his chemistries looked good, and so were his blood gases. This really baffled the doctors, not being able to explain why. One reason could be due to bleeding in the brain, but then you would expect the BP to shoot up in such an event, and his bp was quite normal. But Dr. Cheifetz still wanted to get a CT-Scan done, so arrangements were made to transport Varun from the 5th floor to Radiology on the 1st floor.

While arrangments were being made, Varun's BP started to shoot up...120/80......140/85....160/91...and suddenly what Dr. Cheifetz had just told us (bleeding in the brain would cause the BP to shoot up) was beginning to look like a real possibility.

The CT-Scan got done and we were back in the ICU inside 20 minutes. The scan appears to show something that isn't life-threatening - they want a specialist to look at the ct-scan results in the morning before making further recommendations.

Varun's heart-rate and bp have stabilized and he is passing a good amount of urine now.

Please continue to pray for our little fighter - events of today only underline the fact that Varun has a long long way to go, for which he needs your prayer throughout this ordeal.




27-April-2005 (Wednesday) 10:45 hrs (EST)

Yesterday Varun gave us an opportunity to evaluate his kidney - by ACCIDENT !! Here's how:

Continuous Hemofiltration (or CVVH) is a process that does the function of our kidney. Varun has been on CVVH since last Wednesday (04/20), resulting in the CVVH clearing much of the fluid from his body, leaving not much work for his kidney to do. We had to resort to CVVH only because Varun's kidney wasn't working well last week, producing as little as 5cc of urine per 2 hours. Once you are on CVVH (with the machine setup to clear fluids and toxins from your body), there is no way you can determine if your kidney is working efficiently or not.

In the evening he was becoming a little restless, and in the process he kicked his feet so hard that he brought the CVVH machine to a standstill !! In the 2 hours that the CVVH machine was put out of service, varun's kidney was made to work for the first time since he went on the CVVH, producing 50cc of urine in those 2 hours (instead of the 5cc he was doing until then) !!! This helped us get a good picture of Varun's kidney function and how far it has healed in the past 1 week. With his lungs beginning to recover, we didn't think his kidney could be put to test for another 2 days - but Varun wasn't going to wait any longer to prove his kidney was alright !

We just hope 50cc in 2 hours was not a fluke and that his kidney is really healing well.

Dr. Kurtzberg still thinks that Varun should get his hickman catheter inserted while he is intubated now. She is going to discuss this with the pediatric surgeon again.

Thank you for the continuing words of encouragement and support you have been showering on us while praying for Varun, helping us think positive throughout this ordeal.



26-April-2005 (Tuesday) 17:45 hrs (EST)


Varun continues to do well on the conventional ventillator.

He started out with a ventillator setting of 24 bpm (breaths per minute) and an oxygen setting of 40 percent. (A setting of 24 bpm indicates that if Varun is unable to breathe by himself, the machine would do 24 bpm for him.

In the 24 hours since he was put on the ventillator, they could bring down the bpm setting in stages (24, 22, 20, and now it is16), indicating that Varun is now able to breathe more and more by himself. I am not sure what is the criteria to come off the ventillator, but he is likely to be on it for the next 2-3 days at least.

Varun is now being administered methadone, to help overcome any withdrawal symptoms from the heavy sedatives he has been given round the clock for about a week now.

We'll be meeting with Dr. Kurtzberg later today to discuss what she thinks about Varun's progress overall.

Earlier today the bone marrow team asked of the pediatric surgeons if they would be willing to perform a surgery on varun to get the g-tube (a feeding tube) and the hickman (central venous) catheter inserted since Varun is already intubated (when Varun was rushed to the ICU last week, his existing hickman catheter was the first thing to be pulled out, for fear of the infection spreading through the catheter again) .
We weren't sure if a surgery at this point was a good idea - fortunately the surgeons turned down the idea saying they would rather wait.


25-April-2005 (Monday) 13:30 hrs (EST)

Varun transitioned to a conventional ventillator just before noon today.

By waiting an extra day to make this transition, they could get Varun started on a much lower setting today than would have been possible yesterday. The breathing frequency is 24/minute. Oxygen being pumped in is at 40 percent (this was bumped up a little during the transition - it should come down to 35 later today).

Yesterday Varun's hands had to be tied to prevent his arm movement from interfering with the oscillator, even while he was sedated. It appears that they will now have to deal with his legs too - he is moving his legs more often now and this complicates the "Continuous Hemofiltration" (CVVH) process because the cathether for this process is coming off his thigh and the CVVH machine is very sensitive to movements.

I will try to keep you posted on how Varun is doing on the conventional ventillator. This is a major step towards Varun's recovery that was made possible by your prayers for our little one. Thank you for everything you have been doing for Varun.



24-April-2005 (Sunday) 20:00 hrs (EST)


Varun continues to do well. In fact, this morning (with the oscillator pressure still at 20) his doctors determined that Varun was doing well enough to (be eligible to) switch over to a conventional ventillator. However, because he is doing so well at the current settings, they finally decided to let Varun stay on the oscillator for another day. The reason is, by giving him an extra day on the oscillator, the parameters on the conventional ventillator for Varun could be set at a lower value tomorrow than if he had made the switch today.
If this thought holds, the switch will happen tomorrow (and if he continues to do well on the oscillator, the possibility of switching directly to a bi-pap instead of a conventional ventillator cannot be ruled out).

The general complaint today was that Varun wouldn't stay still....every hour or two the sedative would wear off a little, prompting Varun to move his legs and lift his arms gently. We could see him chewing his mouth very often today. Surprisingly, the oscillator didn't seem to get upset with his movements, but the "continuous hemofiltration" process (the research study that we had opted for) did, causing his blood gases to read higher. This had to be corrected by putting Varun on a higher dose of sedative more than once today.

From another perspective, it is definitely a relief that Varun is capable of moving his arms and legs.

We hope that when the transition to the conventional ventillator happens tomorrow, Varun will be able to breathe well on his own - the first 'real' test of his lungs since being transferred to the PICU. He has come a long way since Tuesday, thanks to all your prayers and thoughts. Please continue to pray for Varun.

As the doctor summed it up today, "Varun continues to remain in a critical state, and even if he continues to make progress at the same rate that he has in the past 5 days, he is likely to remain in a critical state for upto a week". With God on his side with the help of your prayers, we are confident our little darling will be on his little feet again very soon.




24-April-2005 (Sunday) 03:00 hours (EST)


Overall Varun continues to remain stable.The oscillator pressure is now 21, though the oxygen had to be increased from 30 percent to 40 percent (40 percent is not a big deal, and the focus is on reducing the oscillator pressure).

Checking the blood gases is an important criteria they use before deciding to reduce the oscillator pressure another notch. Blood gas tests help to determine the oxygenation capacity of the lungs, the oxygen pressure in the blood, respiratory adequacy, and the acid-base status.

Once the oscillator parameters look good enough to allow them to discontinue the oscillator, there are a couple of options available:

1. Move to a conventional ventillator (this is the most likely scenario for Varun).
2. Bi-Pap (a face mask that provides oxygenation and ventilation).
3. Allow the patient to breathe on his/her own.

With an oscillator, Varun is not allowed to breathe on his own (which is why he is under heavy sedation now). Once he is moved to a conventional ventillator, he will have the freedom to breathe on his own. The transition from the oscillator to the conventional ventillator in itself will be an indication that his lungs are healing.

We still don't have a clear picture of how efficient Varun's kidney is. For eg., during a 9 hour period yesterday his urine output was 0, but the next 2 hours saw 15cc. Today the urine output hasn't been encouraging, but we shouldn't forget that the "continuous hemofiltration (CVVH)" process will result in reduced urine output.



23-April-2005 (Saturday) 02:15 hrs


The day (04/22) started with the Oscillator parameters coming down further again.
Over the last 24-hour period, the parameters were changed 3 times in the following order:
(pressure = 32 and Oxygen = 50 percent).
(pressure = 30 and Oxygen = 40 percent).
(pressure = 27 and Oxygen = 35 percent).
Remember, the target is to get the Oscillator down to (pressure = 18). Though we are at pressure=27 now, future drops are going to be well paced out and needs to be done with extreme care.

Already this afternoon we had a scare when Varun's CO2 spiked to over 90 . Initially they weren't sure what caused this spike. Later it became clear that the 'Continuous Hemofiltration' process (or CVVH) was the culprit. The team handling the CVVH had apparently removed the sodium bicarbonate bag from the CVVH machine because at the time it appeared to be a prudent move (due to some parameter in the CVVH hinting that sodium bicarbonate was no longer needed). However, once this alkalising agent was removed, the acidity in Varun's blood increased, increasing the level of CO2 in varun's system. They managed to rectify this by reintroducing the sodium bicarbonate in the CVVH process.

This only helps to highlight that there are so many factors that can disturb the delicate balance (especially in intensive-care units) and just how important it is to have experienced people who can intervene to regain that balance.

Dr. Kurtzberg said she was very pleased with Varun's progress in the past 3 days, and added that he should continue to show progress for several more days before he can be considered out of danger.

Today I was talking to one of the medical professionals in the pediatric ICU who happened to witness first hand the intense period that unfolded when Varun suffered respiratory failure on Tuesday. (If you would recall from a previous journal, we were asked to leave Varun's room as soon as they sensed Varun was in danger, so that the medical teams could work uninterrupted).
This individual told me that the Bone Marrow team showed the presence of mind to summon the respiratory team even before anyone thought Varun was likely to suffer respiratory failure. And the one person i noticed whipping out his cell phone and sending out several SOS calls was Dr. Driscoll, of the bone marrow team. A big thank you to you and your team, Dr. Driscoll !!

Also, thank you all for the prayers you have been saying for Varun, and to all the Duke Caringbridge families for asking their readers to pray for Varun. Without your prayers, Varun wouldn't have got this far. He still has a long way to go, so please continue to pray for Varun.



Update on Varun 22-April-2005 (Friday) 03:00 hrs (EST)


The amount of oxygen being pumped in has been brought down to 50 percent now (from 60 percent overnight).
The Oscillator pressure has been reduced to 30 (from 35 overnight. target is 20). These are positive signs indeed.

Today, (as the effect of the sedative began to wear off), we saw Varun moving his lips and sticking his tongue out to feel the tapes running across his lips.
The moment they saw this, the nurses immediately injected more drug to push him more deeply into a trance. Though it appears very cruel, I believe if they don't intervene, Varun's movements could upset the oscillator and cause his stats to plunge very low, posing another risk. However, Ramya and I were so thrilled to see (this reassuring) movement in Varun, though it did carry a risk of its own.

We continue to talk to Varun and he responds by spiking his BP a little bit. And yes, we are conveying to him the lovely messages you all have been leaving for him in the guestbook....he sure must be very happy to note that there are so many prayers being said for him. Thank you very much.



21-April-2005 (Thursday) 14:30 hrs (EST)

It looks like almost all the cultures drawn since day 2 of hospitalization (ie., since Tuesday) have turned negative. In other words, the impact of the bacteria was probably contained on the 3rd day (if not on the 2nd day itself). However, what has made matters worse for Varun is the 'respiratory failure' that he experienced at 5pm on Tuesday (04/19). His kidney has been affected, but we don't know yet to what extent it has been affected. The "Continuous Hemofiltration" that we started yesterday will take the load off the kidney and hopefully (?) it will aid in the healing of the kidney. The next crucial organ that we are most worried about is his lungs.

Dr. Kurtzberg and Dr. Drischoll were very pleased with Varun's lab results from this morning. (Again, this is a day-by-day evalation, and like i said before, this only means Varun is moving in the right direction so far).

Did you know that though heavily sedated, Varun can still hear us, despite appearing to be in a deep sleep? A good friend of ours had told us that it is very important to keep talking to Varun even though he is heavily sedated. And today we could notice his BP spiking (in small bursts) each time we leaned over his ear and talked to him. Somehow the thought that Varun can hear us has lightened our heavy hearts!! It appears that Varun can hear us, but the memory retention will be poor when sedated.

Being on the oscillator for too long is not good either. When Varun was rushed to the ICU, he was put on the maximum settings for various parameters of the oscillator. The idea is to reduce these parameters one by one to see if he can tolerate the reduced levels at each stage. What we have seen so far is indeed positive. For eg., from an initial pressure setting of 42, it has now come down to 35. This has to drop to around 18 before he can be taken off the oscillator and then put on either a ventillator, or try to let Varun breathe on his own. Also the amount of pure oxygen being pumped in has dropped from 100o around 60ow, which is good too. The oxygen level in his body is currently at a fairly good 94BR>

21-April-2005 (Thursday) 02:00 hrs


They have now determined the bacteria that wreaked havoc on Varun. It is called Klebsiella.
This is what i found at http://www.personalmd.com/news/klebsiella_102299.shtml

"As you may know, we all have millions of bacteria in our gastrointestinal tracts, primarily in the colon (or "large" bowel). These bacteria are important for normal bowel health and function. Klebsiella is the genus name for one of these bacteria. When Klebsiella bacteria get outside of the gut, however, serious infection can occur."


Fortunately, of the many antibiotics that Varun was put on the day the infection started, two of those would already cover Klebsiella. This is very encouraging indeed, but given the impact of this bacteria on the victim's lungs, it remains to be seen what damage (if any) has been caused already.

In the 24 hours since being admitted to P-ICU, Varun's doctors are pleased with the progress he has made so far. However, Varun's condition continues to be critical, something the doctor keeps reminding us, but the events of the past 24-hours are definitely steps in the right direction, and also a sign that your prayers are working. Thank you so much for your prayers and to all of you who have written to us and left messages on varun's website, offering support and encouragement.

After talking to many doctors and other medical professionals on the suitability of the research protocol "Continuous Hemofiltration" (described in the previous update) for Varun, Ramya and I decided to sign up for it. Being a "randomized" research protocol, mere signup doesn't guarantee the patient would eventually receive this therapy. They run through a randomizer that spits out (something like a) 'yes' or a 'no' for each patient who signs up. Only the 'yes' patients would receive this treatment. Fortunately ours was a 'yes'. The procedure required a cathether insertion into Varun's groin.

The result of Varun's ultrasound of the brain was reassuring. It didn't indicate any major issues with Varun's brain. Thank God!

We miss our little one's playful ways already!! We are praying so hard asking god to let us keep him longer. Varun is god's gift to us as a 'miracle' baby, after many years of waiting.

In the past 2 days, Ramya and I have spent a lot of time reminiscing over the past few months - Varun's post-transplant recovery. This probably has helped us stay positive, because it is filled with memories that are so sweet as Varun learned to take tiny steps, was becoming more vocal with us, and his charming smile (that had disappeared after his transplant) was slowly beginning to come back. Before transplant, he loved to flirt with the staff at Duke using that charming smile of his (Dr. Kurtzberg's students accompanying her during her rounds were often the target of such flirting) , but for some strange reason he stopped doing that after the transplant, reserving it only for his parent's. It probably has to do with the controlled environment he was subjected to post-transplant.

Please continue to pray for Varun.

20-April-2005 (Wednesday) 13:55 hrs (EST)

Varun is showing some signs of improvement, but the Creatinine level (that measures the function of his kidney) is a little alarming. We don't know what this means, but we have been asked to consider a research study (called Continuous Hemofiltration) that is a blood filtration therapy. A patient who suffers respiratory failure after bone marrow transplant qualifies for this study. It again involves getting a line cathether into Varun (by the way, one of the first things they did last night was to remove Varun's central lines....the lines that we have used to administer his medications and for blood draws for the past 6 months. Reason being, blood infection would also have infected these central lines, so it had to be removed).

An ultrasound of the head was done earlier today to determine any negative impact on Varun's brain after last evening's respiratory failure. However, Varun is seen lifting his arms whenver the effect of the sedative wears off a tiny bit - according to the doctor, this is an encouraging sign.

Whether Varun's lungs were affected will be known only in the next 48 hours.


19-April-2005 (Tuesday) 11:45 hrs (EST)


Varun was moved to the Pediatric ICU (PICU) at 5:30pm in a critical state. Though we did anticipate a move from the bone marrow unit to the PICU sometime later today or tomorrow if his breathing continued to be heavy and quick paced, Varun's condition deteriorated so fast at around 5:00pm that we were requested to leave the room as a large team of medical professionals were urgently summoned from the bone marrow unit, the PICU and the respiratory team, and they gathered around Varun's bed trying to revive him. Ramya and i were left watching the monitor outside as we could see Varun's oxygen level (which should ideally be 100 percent for a normal person) taking a plunge from 90..to ..60. It stayed at 60 for a minute, before dropping further to 40 and then all the way down to single digit. As is evident of Varun's character, the doctor said that Varun was fighting very hard to stay alive, despite lacking in oxygen. (This is something everyone who has cared for Varun would vouch for....from the staff at Children's Hospital and Dana Farber in Boston, to the staff at Duke - he is a fighter).

Ramya and I could only console each other as we prayed very hard to Lord Krishna to save our little gem. He definitely heard our prayers as the team succeeded in getting Varun's oxygen levels back up again. Immediately he was rushed to the PICU. Initially we thought Varun had suffered a pulmonary haemmorage, a bleeding of his lungs, possibly due to retention of fluids in his lungs, the fluid buildup resulting from his several medications. However, later tests done at the PICU didn't reveal any signs of pulmonary bleeding, which is a good indication. Varun is now put on an oscillator to ease the pressure on the lungs and to clear out the fluids in the lung.

Varun's recovery now depends on how he responds in the next 24 hours. He is heavily sedated because for this type of oscillator the child is supposed to lie still - and given that it is very difficult to get varun to remain still, they had to sedate him heavily. They have even (intentionally) given him a medicine to paralyze his muscles to prevent any muscular activity, just in case.

Dr. K, Dr. Parikh and Dr. Drischoll briefed us later in the evening on Varun's condition and why they think the next 24 (or 48) hours will be very crucial.

Even now, as Varun lies in the PICU, motionless, we are finding it very hard to cope with the developments of the last 2 days. We knew Varun wasn't doing well since yesterday, but never in our dream did we think we would come so close to losing him twice in the span of 2 days. After making steady progress with his immune counts in the past 2 months, we were just beginning to feel a little more relaxed. 3 days ago no one would have imagined that Varun would be subjected to such a traumatic experience. According to his doctors, if we had got Varun admitted 30 minutes later on Monday, he probably wouldn't have survived. We got to the clinic at the nick of time on Monday - and the purpose of the visit was just to let the doctors see why Varun was a little irritant that day. It is mind boggling (as it turned out) how a bacteria could wreak havoc in a matter of a few minutes. Today again Varun has shown his determination to survive. And survive he will, with God's grace, and with the help of your prayers. Please continue to pray for our little darling.


19-April-2005 (Tuesday) 09:30 hrs (EST)

A short while after my last update, Varun's BP went low again (82/29), causing concern. His oxygen also went low (less than 90 despite increasing the oxygen intake.
For over an hour we had no idea what was going on - the doctor was even considering moving Varun to PICU (pediatric ICU) if his state continued to remain like this.

Finally, the drug they had given to increase his BP started working and Varun's BP slowly began to climb again.

Around 7am we were told that 2 of the 3 cultures taken yesterday had turned positive, for gram-negative. Gram Negative again is a broad category, so they expect another 24 hours before they could determine the precise bug within this broad category. What they have found also seems to tally with their observation of Varun in the past 20 hours - he was sick when we brought him in, only to get sicker once the anti-biotics were administered. The reason is as the anti-biotics start killing the bacteria, toxins are released into his system which makes him even sicker.

Dr. Drischoll (who is in-patient this week) said the next 24-hours will be very critical. If Varun's condition doesn't improve within the next 24-hours, he'll have to be admitted to the pediatric-ICU unit.
Please continue to pray for Varun....he needs your prayers more than ever before.

Heart-rate : still around 200.
BP : 120/60





19-April-2005 (Tuesday) 3:15AM (EST)

Varun still has a high fever (39 degrees), his heart rate is only slightly better (around 200). At least he is trying to move around, but continues to be in a lot of discomfort.
His oxygen level tends to drop off below 90 unless we direct the oxygen tube to his face. (He is not being given oxygen directly - an oxygen tube is blowing oxygen in the direction of his face).

Dr. K was out of town today (04/18), but she immediately responded to my emails (which i send out to update her on varun's condition whenever something doesn't look right for Varun) and is keeping a close eye on varun's condition. Dr. K will be back at the clinic tomorrow (04/19).

Hopefully we will be able to get to the bottom of the real cause of this infection within 2 days. Please continue to keep Varun in your prayers..

Day 143:

18-April-2005 (Monday) 17:00 hrs (EST)

More than 10 days since the last update, and everything was looking good - until this morning when we noticed Varun was feeling some discomfort. It didn't seem to improve in the next hour - and after talking to Barbara (the nurse practitioner) at Duke, we took Varun to the clinic.

Looking back at the past few days, the only things we could think that we did different from his daily schedule were:
1. Varun got his first taste of chicken baby food only yesterday
2. We took Varun to Duke Gardens yesterday, for the first time post-transplant.

While we were heading to the clinic, we thought Varun's discomfort was probably caused by the new food introduced yesterday.
At the clinic, his 1st temperature check indicated 36 degrees. However, within 30 minutes, it shot up to 39.9, Moreover, suddenly he developed breathing trouble and looked very sick. His BP was very low (60/30). He was immediately given anti-biotics and put on fluids. They also took his blood cultures, a chest x-ray, and an ECG. Fortunately, the care of everybody around him at the time got him out of the critical state. Dr. Parikh, who wasn't supposed to be in the clinic today, just happened to be around, and he took over Varun's care. Dr. Martin also came to check on Varun at times. Varun's heart rate, however, was holding steady at 240

Around 3:45 a pediatric cardiologist (Dr. Baker) came to see Varun, by which time varun's heart rate had dropped to 210-220 range. Dr. Baker thought (given the drop in the heart-rate) it may not probably be SVT. Dr. Baker will visit Varun again in the morning tomorrow.

We are now waiting to move to 5200 (Bone marrow unit) any time.

Please pray for our little darling..

Read Journal History

Hospital Information:

Patient Room: 5210

Duke Medical Center

Durham

Links:

E-mail Author: deepakbhas2001@yahoo.com

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