arianddannie

Archive for the ‘New Delhi’ Category

Yet we go forth…

In New Delhi on April 24, 2012 at 2:10 am

 

April 22, 2012 (can it possibly be?)

Hello All,

It has been some time since I posted, with several attempts which did not gain enough momentum to be completed. My wish is to have happy news, unrestrained. In the absence of that, and due to continual demands here, I have not been able to carve out the time to sit at the computer and sift through all that is happening and construct it into words. Many twists and turns, many obstacles, many moments of exasperation, yet we go forth.

Naked truth this morning: Dannie continues in excruciating pain. She is in a minute to minute survival experience still. ~10~ pain, throwing up at 3 a.m….We herald the moments when she is able to break free enough to have a moment of extraordinary, approximated, normalcy… like sitting up in bed and chatting about something other than pain, like laughing at a “America’s funniest home videos”-yes, in Delhi, like a breif venture out in her wheelchair that took days to work up to, like eating a meal and not paying for it with paralyzing pain or throwing up.  Sliding sideways, baby steps toward normalcy… and we rejoice.

Holding On

Holding On

 

The stem cells are working, as indicated by retracing… waiting for the relief to come. We know it may take several trips, yet we still expect and have hope that some relief will be eminent.  More so, we pray for sudden, miraculous and complete healing to trump all other efforts.

Ari is retracing some of his most difficult symptoms right now, as well. He has the recent memory of feeling great to easily recall… while working through the return of nausea, exhaustion, hot and cold sweats, altered cognition,  shooting pain… to name a few.  He is having “end of journey jitters” wanting to be home right now while at the same time wanting to stay to focus on pursuing some business ideas he has for pro-typing a handbag line that he has been sketching for some time, and exploring manufacturing options. Next trip!  Ideas abound, time and energy are limited!

getting ready for procedure

getting ready for procedure

I am great. I am! I have moments of grieving, moment of sadness, moments of cell-shaking tears, moments of feeling that I cannot watch/hear/sense my son or daughter suffer one more thing, one more moment of distress of any kind, one more parried effort to reach out toward life, one more aspect of human existence again deferred, one more insensitive comment or action, one more admonishment that change is coming, is coming, is coming for twelve years and counting. Yet in the midst of this, I have many more moments of quiet, settled, resolve to see this through, whatever comes.

Then there is joy… which springs forth in the midst of writing, talking, or reflecting on the horror of it. Side by side… the endless sadness and boundless faith and hope.

My mantra continues to be faith, not fear!  as a prayer, as a meditation, as a reminder to breathe, as a reminder that there is always always always choice.

Spring outside the window

Spring outside the window

Ari is returning home May First!!!!! I miss him already. His presence, his smile, his attention to logistics, his insistence on excellence for his mother and sister … his love expressed clearly and directly have been pure joy and sustenance for me.

walk on green park

Treatment concludes on the nineth.~Kyler will return around the tenth as close to when Dannie and I leave as possible…  taking care of Dannie with dedication, patience and humor. When we left Belmont, we anticipated that I would come home after a month, and tag-team with another caregiver for Dannie. Her deteriorating medical condition made that impossible, thus I am still here with Kyler’s much needed help. Because of her unexpected stay in ICU , her treatment period was extended;  our original flights to return now obsolete.

Kyler by Dannie's side

Kyler by Dannie's side

We are now having difficulties with securing flights with the remaining air miles for the two of us, and not certain yet if we will need a doctor to fly with us, as we did on the way. As it turns out, we do not have enough air miles for the two tickets (as her pain and sensory sensitivity to noise, light, movement, and touch…still requires First Class to be in as quiet, calm and restful environment possible) We had hoped that Dannie’s pain would have subsided enough to feel confident that the two of us could go it alone without a doctor, and her condition would not require First Class. Doesn’t appear so at present, and we have no MD on board for the journey

That said, if anyone has any air miles to help that would be fantastic. However, we are finding that air miles are not that easy to use, as there are limited flights available to be “purchased” with air miles… so it may be that we find ourselves having to purchase tickets. That is in the context of needing to get home as soon after the ninth as possible.

More Adventure~ More prayer!!! (and faith not fear!!!)

Going Forth!!!
Kate

“Do not grieve, for the joy of the LORD is your strength.”
Nehemiah 8:9-11

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.

Thank you everyone for your comments!

In Ari, Medical, New Delhi, Personal on February 4, 2012 at 12:31 pm

Hello everyone!

Thank you all very much for your supportive and loving comments! It is a joy for me to read and be reminded of all those that have so generously supported and encouraged me, and have made it possible for me to be where I am now.

Right mow I have just started a 4ml stem-cell dose with additional hydration through an IV drip (4ml is a “higher” dose that is administered maybe every week or so depending on my other procedures). This will be followed by another IV filled with a multivitamin.

I am very pleased to report that since my arrival I have experienced reduced daily back pain (almost none on a “regular day” now), levels of energy comparable to what I had at home but without needing adderall, which is huge for me (adderall was the only way I was able to get up everyday and get myself dressed and to take one class), as well a some increased muscle tone, thanks to the rigorous physio therapy routine (11 times per week!).

While I am still very limited in endurance, number of wakeful hours, ability to proccess new information throuought the day, and other physical limitations, the slow changes I have experienced so far give me great excitement and hopeful thoughts of one day being an independent adult man (though not independent of the Lord my God), according to His glory.

Suffice it to say, I am in great spirits this Saturday! I am grateful to the Lord for his many blessings, and to the the people who have given their love and their resources to make my treatment and healing possible, and to those who continue in their love, compassion, kindness, support, and generosity to make healing a reality for Dannie also!

With love, excitement, and gratitude,

Ari

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Stem-cell dosing increase

In Ari, Medical, New Delhi, Personal, Sheila on January 13, 2012 at 12:05 pm

Hello everyone,

It is Friday morning and it feels surreal that I’ve been here in India almost a week! (we arrived last saturday at 1:15 am local time)  The days here are jam-packed with activity.  Starting around 8:30 am nurses (called sisters), doctors, and other clinic staff are constantly in and out of our room until approximately 9:30 pm.  It slows a little in the evening, but for the most part, contact with medical staff seems to occur almost every half hour.

Yesterday, along with another patient and his mother, Sheila and I had the opportunity to go to an outdoor market.  In two grocery stores we found a small selection of organic products.  I even purchased some tea that was USDA certified organic!  It has been surprising and pleasing to have access to many American and other familiar brands of food products.  While walking around the market, we got to see a cow, grazing on flowers and drinking from an abandoned coffee cup.

Three days ago I began receiving nasal stem-cell drops in addition to my twice daily intramuscular injections.  For the nasal drops, a nurse administers a series of three doses with one our between each dose.  Today, my dose of intramuscular stem cells has been double from 15 units twice a day to 30 units twice daily, which is very exciting!!

I can hardly believe that I have been given this amazing oppourtunity to receive such medical care, and the chance of a lifetime to see New Delhi.  Thank you to all!

I will write again when I get another short moment of quiet, haha.

-Ari

Physio Therapy occurs six times a week. My time for physio is 11 am.Holy Cow - Walking in a large outdoor mall, grazing!

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