unexpected change in plans

In Medical, New Delhi on March 25, 2012 at 12:40 pm

Post two ~ Kate

March 20/21, 2012

The sounds of a string of 20 beeping monitors from curtain boundaried cubicles, the shuffling of feet, ringing of phones, call bells loudly beckoning attention, layers of conversations none of which are in English, occasional out bursts of delirium from the other side of the partial divider wall, clanking of metal garbage receptacles being opened and closed, splattering of buckets of cleaning water tossed across the vinyl floor, muted music, the hum of a floor fan, smell of insecticide are causing me distraction as I desperately, but mindfully, maneuver to protect Dannie’s long fought battle for sleep.

She is in Apollo Hospital ICU.

I have not been able to write due to a cascade of challenges which have been given impetus to by the continuation of the indescribable intractable pain Dannie has wrestled for many years. She daily experiences an 8-10 of bone, muscle, joint, and skin pain which landed her in the hospital 4 times in the past 10 months. This pain, though temporarily managed so that she was able to tolerate the plane trip, came surging back full force, plus some, in the second full day at the clinic. The changes in this pain state anticipated by the work of the stem cells will not take place immediately, and the suitcase full of medications that we carried with us did not provide relief. Even with the gracious help from Abha who massaged Dannie tirelessly and the attentive care from NuTech doctors overseeing trials on the medications available at the clinic, the days and nights were sleepless filled with agony interrupted only by the momentary, short-lived pseudo-calm of exhaustion.

On the morning of March 14th, Dr. Shroff met with me and shared her plan/desire to transfer Dannie to a hospital about a 25 minute drive away, to assist with treating her pain. The intention was/is to remove some medications from her protocol, and to replace them with medications that would be more effective and compatible with HESC transplant.

Day Six at Apollo: Dannie’s  first day was spent in the “day care,” awaiting a room, continuing uncontrolled pain, throwing up, delirium caused by pain, extremely challenging communication… hours. Two staff from NuTech accompanied us there without whom it would have been unbearable. She was admitted to a regular medicine unit, and continued to suffer with doctors and “sisters” working diligently to assist her, without success. By the early morning hours it was determined that they would transfer her to ICU to enable monitoring and to more intensely attempt to address the pain.

Still trying. Dannie is now either awake and in pain 8-10 with an emphasis on 10, pleading for relief and sleep or, when her pain is reduced temporarily to an 8 and she is medicated for sleep, she sleeps briefly, awakening to quickly accelerating pain that prevents further sleep. This see-saw has been repeated hour after hour for the duration of our stay here, with some hours more difficult than others, despite IV pain medications.

The sisters provide  tender and kind  care. We are both embracing learning about the culture and, at times, challenged to communicate urgent information in the midst of pain crises. Dannie astutely observed that here she is initially asked less, but listened to more. Her experiences in four bay area hospitals in 2011, with beautiful surroundings, heralded reputations, and initial great hope were all eventually dashed. Listened to, and reinterpreted, and then dismissed… Here the commitment to not giving up, of caring for her, of responding and instilling hope is a welcome relief. We are rolling with the limitations of the environment, space, equipment, language ….sometimes better than others. Waiting, when pain is rising, adds to the suffering. Repeating consumes much energy, trying to communicate linear priorities critical to pain management, to explain that though kindness is intended, touching hurts, light hurts, bumping the bed hurts, voices that are too loud hurt, and being instructed “don’t cry, don’t cry” when Dannie has spent years stoically suffering and is finally allowing, or perhaps unable to hold back tears of pain, provide both new and well-known challenges, intensified.

Can’t wait to get “home” to NuTech and resume treatment that had just begun…

my bed at apollo icu

my bed at apollo icu

Dannie with sister, Angum. amazing loving care

Dannie with sister, Angum. amazing loving care

Ari is dashing about with Clint, his caregiver, playing tourist during his hiatus from treatment. He is growing in his local knowledge and comfort level. He visits us nearly daily, carting things back and forth between the clinic and hospital, a 25 minute ride away from his hotel across from NuTech. Today, however, he is a bit tired, and has agreed not to come, but to take a day of rest.

Ari’s back continues to be free from pain, and his new-found energy enables him to have activities in each day. He continues physio at the clinic, visiting with his “Delhi family.”  The relief from longing for us to all be together postponed, he continues to absolutely make the best of each situation, each day. This has been a rite of passage, of sorts for Ari. Despite circumstances which proved challenging, he has remained focused and steadfast in his direction and commitment to healing.

Post Three

March 23, 2012

Still at Apollo. Trying to find medications that will work to get Dannie back to NuTech. Unclear what will happen, what is needed. Episodes of brayacardia.  Still spicking to 10 (pain scale top) daily. Never below 8. Tries to lay perfectly still so not to stimulate pain. Can’t tolerate touch much of day. Eye mask and reverse noise earphones. Eating and going to bathroom causes pain spiking.

Stepping forward in faith each day with our eye on the goal. Suspending needing to know. Being in the moment, loving each other with tenderness. Missing Ari.

“And we know that in all things God works for the good of those who love Him, who have been called according to His purpose.” Romans 8:28.

  1. We are praying and praying for Dannie and you right now. Much love.


  2. Kate, my heart goes out to you and your family. I cannot even think to relate to the pain that your family has endured. Keep the faith and I pray for healing soon. This has gone on far too long.


  3. so hard to comprehend the agony Dannie is experiencing and how hard it has to be on you, Kate, and not being able to stop it. Will cont. to hold you all up in prayer…….Renee’


  4. There is nothing ordinary about you, Kate, in my view your love, patience and perseverance is beyond measure. You have risen to every challenge with grace and extraordinary strength and focus. I wish for you, Dannie, and Ari everything such a virtuous life deserves but most of all just health, the simple joy of living and breathing without pain. Prayers, prayers, and more prayers….


  5. I can’t fathom how hard this is on you and for Dannie. Know that many are praying for her. for Ari and for you. I know your faith is strong. Others are praying for strength when you can’t find it and hope when it’s hard to see. God is holding you in the palm of His hand.

    Cath Brown


  6. Dannie, you might have the strongest spirit out of anyone that I know. You have had to muster more courage than I can fathom, and you’ve done so with inspiring grace.

    Sending a lot of love from California,


  7. Our church family is praying for you. Praying for pain managed and healing beginning.


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