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Posts tagged ‘care-giving’

The Provider

** this post was written under the influence of Vicodin

Today I went to the ER for severe abdominal pain. I accepted long ago that pain is just a part of being a woman, but when it wouldn’t go away and I broke out in chills, I decided I needed to rule out Appendicitis and other things I hadn’t dealt with before.

David called a friend to meet me at the hospital around the corner from the church and then took the kids with him to Sunday school and service.

The ER was empty, the waiting room was clean. It was so calming. I felt more relaxed in this adult environment where I could be the patient and not Margaret. So what if I wanted to crawl into a ball on the newly waxed floors, at least it was my own teeth I could grin with and bear it.

We immediately went to a room, took vitals, blood work, etc. I met the RN, the clerk, the ultrasound tech, and the PA. From the beginning they kept referring to the authority behind the plan of care as “The Provider.” “The Provider” has ordered these tests. “The Provider” will look at the results and then decide if you need a CT scan. There was never mention of a doctor. There was never a promise of a visit by a doctor…although it was not ruled out either.

When “The Provider” was first introduced, my friend and I immediately remarked how eerie that idea was. We felt watched, like someone was sitting in a sky box or at a call center across the Pacific making judgment calls based on the 5 symptoms I listed on the in-take survey. She guessed “The Provider” gave the hospital more flexibility so I could see an NP or MD without getting my expectations for one or the other. I felt “the Provider” was the hospital itself, an institution, the one that had taken on the liability and therefore responsibility to care for me and could send whomever they pleased to do this. (Our best nurses at home are LPN’s with 20 years experience in the field. I was not miffed at being cared for by nurses). The term felt so abstract as to not refer to anyone really. It didn’t matter who was making the decisions, Kim (RN), Aleisha (PA) were the ones caring for me. Who is “The Provider”? Is it anyone? Or everyone?

Maybe because I was missing church to be in the ER, I started to imagine “The Provider” as a theological term. Was it really so different than the other terms I use to address G-d in a pastoral prayer: Creator, Holy One, Gracious Lord, Loving G-d? Doesn’t “Provider” fit right into the Trinitarian language: Creator, Redeemer, Sustainer?

Over the last 4 years, I’ve faced a lot of false idols I’ve built up when sick and vulnerable and at the mercy of doctors and healthcare systems. When Margaret’s first surgery by a renowned heart surgeon went badly (we only discovered this 2 weeks later, when she wouldn’t extubate because her left vocal cord was paralyzed), I stared down that need for complete trust in your surgeon as god and expectant trust in G-d as a perfect surgeon. When you turn your back on your newborn in the OR and walk to the waiting room, what choice do you have but trust? But what does that trust feel like? Is it tied to the moment of surrender or to the outcome of the process?

As unlikely risks and undiscussed side effects piled up in Margaret’s NICU and home care course, I found trust to be a liability, especially with healthcare staff. What could they really know in the 5-15 minutes they spent with you, the 3 hours they trained in your home, the trach change they may have only done on a doll? What if your surgeon (or his fellow) had been up all night or had just fought with her partner leaving her angry and nervous? There were so many variables, how could you rule them all out and relax as they needled, gassed, and cut your child? I began to wonder if trust and faith were really synonyms or something else entirely. Must you experience trust in others to have faith in something larger?

A pastor I worked with often said “God has already provided everything you need.” This rings differently to the mother of 2 struggling with homelessness than it does to the parents trying to afford school tuitions or the former athlete faced with cancer and the loss of his competitive life. I heard some people focus on the “already provided” and wonder what gems or safety nets they’d overlooked. I heard others focus on the “you need,” and set a regiment of greater simplicity.

It’s an interesting concept–“to provide.” It’s more about the act of giving not what actually is given or who gives it. It’s impossible to look around at this earth and not feel something is being provided all the time, to every living thing.

In the end, I decided I was alright with my trust issues. Trust was attached to results. To certain deliverables: good care; meticulous, skilled surgeries; adequate and accurate follow ups. Faith, as I would search for it now, would not be attached to certain things. Good and bad outcomes fell on everyone, everyday. Who were we to expect only the best? Faith would be about finding provisions all around me. To miss what didn’t come through for us, but to believe the act of giving never stops.

I never did see a doctor, but I got a diagnosis and enough pain and anti-nausea meds to treat me. As I waited for my friend to pull the car around, I caught a television segment on “mind over medication.” The attractive young doctor in a blue wrap dress cited two studies about the power of the mind to fight pain. There were holes in her argument, places she invited leaps of reasons to reach conclusions but the concepts of healing through giving to others and through receiving care resonate with me.
The first said “giving to others” produces chemicals in the body that alleviate pain and in the case of one man with MS allowed him to live 11 years after he ceased his 12 prescriptive drugs to treat MS (The doctors said he’d live only 1 year without them). The second study showed that the presence of a doctor you trust and who shows a belief in your ability to get better (a healer she called it) is as important as the treatment itself. “A doctor is the placebo effect.”

Every day I get a medical bill and I am floored by the rising costs, the increase in tests for diagnosis (more items on the bill) and yet the decrease in time we ever interact with another human being. The system is broken. The costs are too high. ($10,000 for our last Children’s ER visit, to be left for 8 hours in a room, with me doing all the work of suctioning, nebulizing, oxygen monitoring, etc). The doctors can’t fight the economics of it anymore. No one can tell you in advance what a procedure costs and good luck getting clear answers afterwords.

Perhaps it is more accurate to call whoever or whatever cared for me today: “The Provider.” I never saw their face but I did benefit from the provisions. If I saw a “healer” (one who believed in my worth and ability to get better) it was in my friend who stayed with me those five hours.

That was enough for today. Will it be enough for tomorrow?

For those commenting: Have you heard this term “The Provider” in lieu of the doctor?
What term do you use to describe G-d when you pray?

Go Slowly

“Truth, like love and sleep, resents approaches that are too intense.” W. H. Auden.

I ran across this quotation in the seminal work on Traumatic Stress by Bessel van der Kolk. I have been blessed with an assignment/grant by the Louisville Institute to research this topic and its effects on people, pastors, children, etc.

Coping with the last three years has included our intellectual efforts to make meaning out of the ups and downs, the outcomes, good and bad, but also to watch how our conclusions often contradict the meanings of others or at least fall short of including all possibilities. Sometimes, humans don’t even realize how the words of comfort we offer each other if applied in another situation are painful and exclusionary. This phenomenon almost knocked me off my feet the morning we left for Ohio. We were saying goodbye to our night nurse who could tell I was quite nervous. She has been a pillar of strength and insight since we first brought Margaret home. Her own life has enhanced her natural wisdom and calm as she is now 9 years into morning the loss of her two daughters (then 7 and 17) in a car accident).

As we were parting April 2, she said “don’t worry, you can tell by Margaret’s spirit that she is meant to be here.” It was the most generous thing she could say and unusually theodicy-like for this survivor of grief but still I welled up with tears from the cruelty of such a belief as I looked at the photo of her daughters that had been cast onto a gold heart necklace she never took off. She wasn’t worrying about what that statement meant in all cases, especially not if she’d said it to her former self, she was just offering me comfort at that particular time.

Theodicy (the simplistic definition of this is why bad things happen to good people) is hard to hear when it comes out of the mouth of someone who uses it to justify their own life experience or lack thereof. But I’ve seen its other service when it comes from someone who means it only for the good of others at the exclusion of themselves. Sometimes what we say is as much a recognition that we can’t know the whole truth as it is a desperate attempt to grasp Truth intensely. Almost everything I hear myself saying in times of tragedy or even just in sermons, (I am as skeptical of my own words as I am of others’), I find falls short at some point, excludes some aspect of this good earth and wonderous universe. And so whether I accept or resent each attempt at truth-telling has more to do with the humility or desperate intensity in which it is delivered. The meaning of what we say can’t be found in the dictionary but only in our bodies and the cells that store memory. In the resonances those words make in our bones, our emotions and our imaginations. Communicating is not conveying literal meaning, it is offering an interpersonal meaning — one that has been lived and may be shared with the consent of those listening.

So I am struck by this idea that Truth resents the intense approach. Certainly in cases of trauma, we must unearth it slowly and particularly, warding off our tendency to globalize our experiences.

For our part during our re-entry ( we returned to Georgia this weekend) we are working most diligently on love and sleep. As someone how has been surviving on 2-4 hours of sleep a night for the last 3 weeks, I can say that yes, sleep is also a state that must be wooed. For weeks, I’ve survived on adrenaline. I could feel it coursing through my veins so that even if I wanted to sleep I could not, feeling as if a live spark was traveling throughout my nervous system. Now that the threat of Margaret stopping breathing is not on me alone, I can lower my fight or flight reaction, but body chemistry has its own rationale and I have had to watch it let down its guard over several days of being home. It’s so good to be with David, the nurses, friends and a church who can affirm that rest is in fact the most important task. We had an inspiring start as we returned home to a beautiful garden prepared by David’s mom the week she stayed here with James and a well-rested, joyful James from his time with her in Decatur and my parents and grandmother in Nashville. As tired as I was, I actually had a health boost due to the incredibly tasty vegan meals prepared by the Tiekes in Cincinnati. Any mother/housewife would trade a few hours (but not all) for being given tasty meals and a clean house for a few weeks that she didn’t have to do herself. Thank you, thank you to our incredible circle of support.

As for love, we are also taking our care-giving gently with Margaret as we try and wean her off the tube. She is her resilient and at times exuberant self. We tried going back to school but found she was too tired and also intimidated by the kids’ reactions to the feeding tube in her nose and their inability to hear her say “stop. go away.” when they followed too closely or came up from behind to touch her face. So for now, we are working on feeding by mouth with great success. She took all her calories by mouth (a record recovery rate for her) and is mostly struggling with water and thin liquids. She still gags more often than not, but she has said she wants to get the tube out. It seems the day at school and the reactions of others offered something in terms of motivation.

She complains about pain in her ribs still but has also refused the Tylenol and said she can handle it. This kid is very astute as to how she feels but also to the lengths she must go to be fully recovered.

It has been interesting to see her mind mature especially as it relates to the passage of time and the acquiring of skills. She has set a goal of getting her NG tube out next week so she can return to school and of getting her trach out by James’s birthday (July 7) because it is a day she can look forward to. The trach will likely come out later than that, perhaps in August or September. Cincinnati called back yesterday and scheduled a follow up scope for Wednesday, June 5th! It sounds like we will have 2 or more scopes before a sleep study and capping trial then decannulation (taking out trach). Margaret also talks about turning 5 like her brother so she can go to kindergarten at Oakhurst and so she too can read Harry Potter at night. James is excited by this because he says when he is 7 he will be able to read the series to her, the way I do for him.

It is nice to hear them planning far into the future and for us to think about living more than a few months ahead at a time. And yet, as the reappearance of that darn NG tube reminds us, reaching our long-term goals is a process, the intensity of which must be meted with truth, love and sleep!

Hope is too Busy to Wait

Hope is too busy to wait to be discovered

The past three days have been exhausting even with the help of friends and family and the fun surprises delivered. Thank you so much for bringing light to our days. Spring blossomed overnight here. On our walk to the playground there is a canopy of pink flowering pear tree I stroll Margaret under and it reminds me of all of you surrounding her in prayer, light, hope, good vibes, whatever it is you call what you do when you write “thinking of you.” Even the 20 something male clerk at the Whole Foods told us “I am not really a pray-ER but you are in my prayers.” The honesty of his statement disarmed and entertained me so I squelched the urge to question where exactly that put us “if in prayers never prayed?”

Margaret has shown signs of progress each day from energy level, to less pointing to her rib and complaining of pain, to more willingness to abide by her rigorous schedule for bolus feedings to taking yogurt or thick purees by mouth successfully with concentration. The latter helps yank me out of the part struggles with PO feeding and believe this recovery can actually be shorter and dare I say, complete, if there is such a thing.

Tomorrow we go back to the OR for a bronchoscopy to see if her airway have held the shape of the grafts without the stent to hold it open or if it has collapsed in, dissolved the stents away, or merely swollen shut. The reaction of her body to the grafts will determine our next step and possibly chart a course for recovery over the next 3 to 6 months.

Today a hospital mate of ours who had the same type of surgery (although all cases are different when it comes to airways and trachs) got great results today and sent me a photo of a good looking airway and grafts so I am feeling more confident going in tomorrow than before.

Someone recently told me they just had a feeling it would all work out that you can tell just by looking at Margaret and her spirit. While this is true, I am also aware that it is not just some glimpse of luminosity that determines our hope for the future, it is also the attention to the details of her care that get her back on track and allow her to heal. Some have the privilege of looking at a distance for hope among the forest, but a few of us can only look for it while tending to the trees.

The day of MGs surgery I learned a mom from my trach parents support group lost her daughter much like Margaret but two years younger with a twin brother. She turned blue without warning and no trach change, CPR or EMT could bring her back to consciousness. They donated her organs two days later. Hope for the future feels very different when experienced through the vigilance of the present.

Today, I saw a bright red cardinal in the wooded area beyond my room. It sat regally on a high branch of a very tall tree. In my state of sleeplessness, I envied its stillness. I worried if I opened the door, the sound would scare it away and that my approach would surely make it fly. I went outside anyway. It remained but watched me and I it, then a saw a flash of burnt orange in my periphery as a robin swooped down into the muddy creek bed between the trees and the bank where I stood. The robin moved frantically around looking for worms. It registered me but kept moving in my directions in search of food. My eyes darted back and forth between the two birds. My attention wanted to draw closer to the cardinal’s scarlet silhouette but pulled back to the robin’s bobbing breast. The cardinal flew off in search of solitude or a safer distance. The robin remained aware but undisturbed by me, not allowing distraction or fear to keep it from its task at hand.

Too often, when we talk about hope, we describe it like the cardinal in the tree, a streak of scarlet in stark contrast to a dreary landscape but that image never lets us come too close before disappearing from sight, looking for a higher perch or a quieter setting where it can sit undisturbed by human on-lookers. That hope flew off the moment (3 years ago) I realized a healthy child is not only an unattainable goal it is an illusion for human life than the label “medically fragile” we brought her home with.

I could not outlast the robin. I grew tired before I could watch her fly off. She was just too busy wading through the mud, searching for food, maybe for those who share her nest. Her orange breast now the brightest thing in the wooded area and also the busiest. When it comes to hope, I suppose I trust the robin’s perspective more than the aloof one the cardinal took today.

So tomorrow at 9am, don’t search for some quiet place or anesthetic mental state to send up a flare for us. Make yourself busy and useful and hope that one day MG (sedated for the 18th time) will be that too …very soon.


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