arianddannie

Archive for the ‘Medical’ Category

In the dark of night- not for cowards

In Medical on April 14, 2014 at 3:58 am

This morning at five – rising pain. So far, this long night and dark morning, she is holding on at home… Thirteen visits to the emergency room in three weeks. Working all day while she fights back pain at an 8 with our new care giver, Maria, at her side… then when she can no longer… pain escalating to a 9 from the weariness of the day and all resources utilized… we are left to head to the hospital… and relief is not forthcoming~

Helping her to the car in the dark of night, trying to drive fast but careful- missing bumps, sharp starts and stops, that radiate pain through her body… parking in the drive way in front of the emergency department, flashers on, I run in and get a wheel chair, run back and carefully help Dannie out of the car, wheel her in and hope to be greeted by a warm face and caring, leave her there, park, run back, registration, questions, describing the indescribable, asking what doctor is there in hopes of receiving compassionate care, asking about the wait, sitting in the waiting room, rocking, breathing, massaging sometimes, sometimes touch isn’t good, listening to music, wiping her brow… and finally a bed… wheel her in, undress, get on the table and wait again…dim the lights, praying for compassion and help… praying for quick response… by now the pain has been at 9 – 9.5 for hours… Answering financial questions, nursing questions waiting for the doctor….  and not knowing if the response will be one of impatience or assistance, whether I will be able to breath and know that help is forthcoming or if I will have to carefully negotiate to get my daughter help. Doctor flips on the glaring light and decides. Dannie waits again… and relief is, at best partial— if back down to an 8 we go home for her to continue to white knuckle it and pray that it will not rise again. So grateful to Annegret and Janae for their answer to my calls, for their loving presence, for taking time from their busy lives. Most recently the hospital is ready for her to leave when her body is not yet relieved– discharge papers left on the bed, pain coming home with us.

Home, settle her into bed.. no settling. Nap a bit… get up, arrange medications, wait for Maria and I am off to work, carrying her in my heart all day long. Checking in with Ari who is facing challenges of another kind, longing to be along side him as well, cramming in phone calls at lunch to keep moving forward, obtaining care, pursuing new avenues…and the other stuff of life.

Thirteen times in three weeks.

I am praying for Dannie to have a peaceful day- she hasn’t had a pain free day since 2001. She doesn’t remember what a body at peace feels like or what it is like to plan a day and be able to realize it….To get out doors and to leave the house for other than a medical appointment or hospital visit has been  so rare.

Only faith and love have sustained her. Her world has been so small and it takes courage for someone to venture in to it, to be present, to love and not retreat….she craves a big extended family, dinners, people all around. She is, by nature, a social warm person, thriving on connection. Yet this disease takes the ability to initiate and sustain relationships  away, and leaves her subject to who will reach out and be here despite her inability to actively reciprocate as she would like. So many longings in her heart that she cannot fulfill. She has put her heart on the line over and again – To feel she is a part of something – that she belongs, that she is significant and not forgotten. To be brave enough to let others in, not knowing if anyone will stay, to believe that she is worthy. Sometimes she feels she is living in a pretend world, believing in things not seen, as the evidence is not there… Longing to  relate with human beings other than me, Ari and care providers, to know she matters—to have relationships with history, over time.

Her isolation makes each interaction tremendously significant.  Abandonment is a more searing pain than the physical  pain- to feel insignificant, dismissed, left behind, not important enough, replaced and  forgotten. To be recognized as a human being, with real feelings, real needs, for the things and experiences we all take for granted- that she is worthy, lovely, lovable. This she needs to live… For others speak hope, encouragement and care to her when she needs her hope enlivened or cannot hold it for herself- to offset the inhumanity of her isolation, her pain, her loss, and the trauma of medical treatment, compassion-fatigued and even mean spirited or cold providers. She is whimpering in her sleep next to me right now as I lay beside her, praying and visualizing health.

She has not had a pain-free day since she was ten-

Yet I believe today can be that day. Envisioning her on horseback, free. FREE. ”

Please Remember her Spirit and Join Me in Seeing Dannie Healed.

Please Remember her Spirit and Join Me in Seeing Dannie Healed.

September 2013 ~ Holding On

In Medical, Uncategorized on October 3, 2013 at 8:22 am

September 15, 2013

“Nothing like a hospital stay to start writing again”— not so this time. Minutes to hours to days, filled, non-stop, surreal.

Dannie’s new found improvement was/is exciting and encouraging. She has found her treatment of choice for this leg of the journey, improving her overall health, supporting the developing stem cells, beginning to see a filtering of light at the end of the tunnel.

Excited to visit home with her improvements, spend time with family/friends, get a few appointments completed, gather some things and return to Wichita for continued treatment… she journeyed home, by plane~coach not business, able to sit up! and ride in car…. something impossible for years upon years. Two days before she was to be here, we found mold in our home, resulting in Dannie not being able to sleep in her own bed, but in a hotel…  Unexpectedly, the break from the treatment which was so healing and helpful, the travel, and a few other challenges, seemed to give way to a return of her spine and body pain…

Blow torch up and down her spine, electrical shock pain streaking and jolting through her body, feeling of broken bones, shattering with weight bearing, movement. Nausea, sensory sensitivity, hot and cold,  migraine….Efforts to arrest it, reverse it were unsuccessful, resulting in two trips to the emergency department  and a third visit, admitted and inpatient, for nine days thus far. ICU followed by a step down unit, now on an Acute Care Unit. An episode that was excruciating to witness, I cannot fathom what it is for her to experience. Home, back to the emergency room, not once, but twice, last time the night Ari was flying to India… I stood in the hallway, quietly talking him through nausea as he had a 5 hour layover in Korea.

I can’t write about Dannie’s ordeal—ordeals— now. It is too much.  I am too weary from witnessing such suffering and the unbelievable and exhausting episodes of hospital groundhog day…

Plan: To get thru this – to find a way to quiet the pain and for her to get back to the treatment that was serving her so well and to stay longer, to allow stabilization, and the solidifying of her progress.  Somehow. Some how. Some how. Soon. Holding on. Sometimes wanting to let go, then holding on some more.

August~ People Acting as Angels

In Medical on October 3, 2013 at 8:20 am

August 26, 2013

Dannie is across the room sleeping, a hotel in San Mateo, back from Kansas and can’t come home because we found out last week that our house has mold. Ari must not return here after his next trip to India for human embryonic stem cell transplant in October.

Yes. Twice in our life we find ourselves urgently in need of a new, mold free home.  This whole ordeal started with a flood in our house, mold, sickness, hotel, dispose of EVERYTHING that might have mold spores, which is essentially everything, pull down, rebuild, sell….rent…… and mold.

Dannie’s trip to Kansas was successful…while slower progress after the surgery there is again improvement, more life, more hope. Dannie’s current wish is to return to Kansas for continued treatment. This may need to be for an extended length of time and we are exploring options to allow this to happen.

Dannie and Dr. Jernigan 2.21.13Dr Jernigan and Dannie

Dannie in the Wichita Snow... Taking Walks -- PLURAL---for the First time in Years.

Dannie in the Wichita Snow… Taking Walks — PLURAL—for the First time in Years.

Meanwhile, back at the ranch….. Ari is gardening, resting, taking pictures and preparing for his next trip to India, leaving September 30, 2013. A group of anonymous donors have made this possible…. no words. No words can describe how grateful and hopeful we feel.

Below are some of the pictures he has taken recently, a new form of therapy and healing for him.

Art Photos and Mayras bday santa rosa 280

Art Photos and Mayras bday santa rosa 144

13 and Castle Rock SP 247

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Nothing like a hospital stay

In Medical on October 3, 2013 at 6:59 am

Started June, 2013 ~ interrupted and resumed August 2013, interrupted and finished September 2013~ and so goes our lives.

JUNE

Nothing like a hospital stay to start writing again. Hours of captive attendance. Quiet required. Stationery. The beeps and clicks of monitors and pumps… The long sought sound of restful breathing finally added to the chorus. Dannie appears to be finally sleeping- head dropped, ice packs surrounding her neck and jaw, head phones, eye mask… and her brow un-furrowed for the first time in days.

The wisdom tooth extraction went very smoothly on May 31, 2013. Like many people with long term undiagnosed chronic disabling illness, people who have suffered from daily internal assaults, and a medical world that initially one thinks can help, then sometimes harms and often just doesn’t know what to do, and the lost after loss of elements of what makes life worth living… Dannie is now suffering from PTSD related to the pain of her illness, the unavoidable and compounding loss, and the medical treatment and intervention. Once with steel nerves, she could face just about anything with eyes open, grounded resolve that she could win over any potential intrusion and interference to her day… while that spirit is still here, her tank has been emptied too many times. Too many things gone wrong… too many promising trials that became the source of more pain, or the pain of nothing yielded.

So her wisdom teeth – generally a teen/early twenties no big deal thing — were seen to be sitting on the nerves, and whose extraction presented her with the anticipated loss of feeling in her lip and cheek (eating, smiling, kissing with no feeling).  She did not waver in her decision to get this over with despite the potential outcome. She heeded encouragement and direction from one of her treatment providers that this would be an important step in her healing, despite her fear. He wanted her to complete this surgery, before resuming other treatment. She pushed through four painful and trauma triggering appointments, and faced checking into the hospital, general anesthesia, and surgery… dealing with dozens of new providers; three hospital teams: pain, surgery, medicine; countless nurses and all the relationship challenges–the negotiating, the advocating, the communicating, over stimulating and exasperating environment. Lights, hospital food, noise, disruptions, poking, squeezing, intrusion, exposure… it is simply exhausting upon exhausting for a Lyme patient whose sensory perception is heightened aggravated and hurts, when touch sends painful sensations reverberating, when day is night and  night is day, or there is no night (sleep) at all. Struggling to smile to establish positive relationships with doctors, nurses, assistants, lab techs….when every cell in her body is saying, “QUIET!!! No noise, no touch, no light…”

She now is resting post surgery, with no loss of feeling in her cheek or lip. Thanks and rejoicing!

That said, a pain crisis throughout her entire body was triggered, landing her in the ICU where we now reside. Too many days like this for anyone, yet one so young. More time in hospitals than any other place than home. More contact with doctors, technicians, phlebotomists, nurses, physical therapists and on and on… than peers. Peers are an endangered species in her life. Where are the healthy friends that long ago claimed their loyalty and love?  They are rightfully living the life of the early 20’s …. Adventures, exploration, figuring it out.

I can’t go there right now. Neither can she or Ari.

So here we are. Knowing this all too well, yet not knowing what this specific chapter will present.

Four days later: They wanted to move Dannie to another floor, out of ICU, to take her off IV medications and switch her to oral pain meds for a few days. She insisted on going home. She told them she knew the drill and that being in the hospital was not healthy for her… that she could face the transition at home better than in the hospital environment. Despite their unfamiliarity with this kind of discharge, she had an amazing nurse practitioner that HEARD HER and we left directly from the ICU to home… several prescriptions in hand… and praying for a cessation of pain that was not accomplished in the hospital.

Dannie at UCSF after surgery

So brave. None of this is okay. Yet the 13 years of medical trauma, combined with the internal beating her body gives her daily has become too too much. TOO much. I see the toll it is taking. For the last year, I see her changing. I see it. I see it. Shift focus…. I see her persistence, her resilience, her fierce grasp to taking hold of her life, over and over again. Grabbing it back from pain, wrestling it from nausea, finding her voice and claiming it with

The days that elapsed in the weeks to follow were filled with Dannie diligently getting off the pain medication and recuperating slowly. Thankful for the successful surgery, yet very saddened and concerned about the trauma it caused in her body and spirit. She is not bouncing back. She got rid of 5 of the six pain medications. Said NO to them. Her hope is waning, her sadness, frustration mounting. Fighting and relinquishing at the same time. She can’t talk about it anymore. Shut down. White knuckling it.

The plan is for her to get better enough to head back to Witchita for more treatment, which was so amazingly effective, so quickly, making more progress than in years… making her body a better environment for the continued development of the stem cells. She wants to get back there… continue to progress… Lyme rebels after any trauma to the body… surgery qualifies.

We planned her trip for June 23rd to travel, and resume treatment June 25th.  This was to be enough healing time.

Reservations made, caregiver hired…

But her body is not cooperating. She keeps trying to get up each day to pack, to get ready. Each effort thwarted. She insists that no one pack for her… she wants to do it herself. Each night she makes a list for the next day. Each day the list is carried over. I see both her disappointment and fear, right alongside her stubborn persistence.

The 23rd comes, trial upon trial to get up. If she can’t get up, how can she fly? And change planes, and travel to the hotel, and get settled, and start the five day a week routine of treatment 4-6 hours a day? The noise, the light, the movement, the pain of the stimulation on every level. Pain at an 8 baseline.

Flight changed to the 24th.  Then the 30th. She packed over those days. On the 27th we moved her to a hotel next to the airport. One step closer for rest and launching. Her bedroom at home where she laid for 11 years feels like a jail cell… we brainstormed how to increase the likelihood that she would make the flight on the 30th and this seemed a good plan… no triggers, just quiet. She was able to be up a bit, and out of bed.

And, at 4:05 p.m. June 30th, she was off!

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!