A patient with Down's Syndrome and ARDS; Carol was not "my" patient

Not My Patient . . .

“Your patient is being discharged,” my nursing instructor informed me as we started our clinical rotation on a medical/surgical floor in my first year of nursing school.

"Oh, just great," I thought to myself.  I had spent hours learning about and planning the proper care for "my patient" who had recently suffered a basilar skull fracture.  My sheaf of clinical documents, medication lists, and a large pathophysiology flow sheet, were now suddenly made obsolete by my patient's imminent departure to a rehabilitation facility.

“He’ll still be here for a couple of hours. We’ll find you another patient later,” she assured me.

I was relieved that my painstakingly-crafted flow sheet, care plan, and medication cards wouldn’t go to waste. Although I only had one patient, the preparation required for the clinical day was nevertheless tedious and often proved exhausting in addition to other demands of family, school, and life in general.  Still, as a new nursing student with little experience in the healthcare setting, the advance preparation gave me confidence that I would know what to do for my assigned patient.  I decided not to fret about it, and simply hoped I'd be able to cope with whatever came my way in the shift ahead.

Our group of 10 nursing students and our instructor assembled at the nursing desk waiting for the nurses going off duty to give change of shift report to the group coming on.  We were working second shift, 3 pm to 11 pm that day.  Each week we spent three days attending lectures at our nursing college and two days working in the hospital to practice the hands-on-nursing skills and put into practice what we learned in class.  There was always a sense of heightened anxiety on our hospital days, particularly in the chaotic environment of our very large county hospital. This was a trauma center and the busiest hospital on the U.S. side of the Mexican border. It was also a teaching hospital, with a slew of resident doctors and interns managing most of the patient care. 

“The patient in 410 has a fever of 101.5!” a nursing assistant called out as she passed the nurses’ station where the harried day-shift nurse was “reporting off” to the oncoming "real" evening nurse and our huddle of nursing students.

The nurse going off shift sighed, “I’ll call the doctor—the girl in 410 just transferred here from the pediatric floor a half-hour ago. She’s supposed to go to the OR for surgery, an ORIF of the femur, as soon as her mom gets here to sign the consent.” The RN turned to our instructor, “It would help me out if one of your students could give her an acetaminophen suppository for the fever.”

Although none of our group was assigned to care for this new arrival to the surgical floor, we were always ready to perform a clinical skill to check off our list.  Therefore, an entourage of three students and our instructor entered room 410 where 18-year-old Carol, afflicted with Down's Syndrome and a fractured femur, would prove to teach me more than any other patient that day.

Carol had been struck by a car as she crossed a busy street the day before.  The fractured leg was her only known injury. She appeared to be sleeping deeply, with regular, but deep and fast respirations. Her eyelids fluttered as I explained that we needed to give her a suppository. Working together, we students gently repositioned her, mindful of the Buck's traction supporting her injured leg. A slight groan was Carol’s only acknowledgement as we cleaned her bottom (she had been incontinent with a bowel movement), before I inserted the suppository. Our instructor pointed out scattered petechiae on Carol's chest as we snapped a fresh gown across her hot skin and turned her to replace the soiled linen on her bed with clean sheets.

“These petechiae are probably the result of the trauma from her car accident,” our instructor explained, as she gestured towards the splash of flat pink spots that looked to me like tiny red freckles.

Back at the nurses' station our little group reassembled to continue shift report.  We told the nurse about our interventions and reported Carol's limited response to our actions.

“They gave her an injection of Demerol before she was transferred from the pediatric unit," the nurse mused, "And we don’t know her baseline mental status, she has Down's, and for all we know she could be profoundly retarded.” 

I was absorbed in my clinical experience for a few hours. The care for my basilar skull fracture patient proved to be very minimal. One of our nursing students needed a helping hand with a very complicated dressing change for a young man who had lost a leg in while trying to jump aboard a moving train.  And I was pleased to learn that another patient needed a new intravenous needle placed.  I was lucky enough to get the chance to do the venipuncture.  I suspect that I caused that patient a great deal of pain with my novice attempt, but with a seasoned nurse over my shoulder talking me through it, the result was satisfactory.  I kept busy in this way helping the staff nurses and other nursing students with their tasks until my patient was officially discharged.  My instructor disappointed me then by suggesting that I return to Carol and follow up on her care. It seemed a puzzling assignment to me, I knew there were no meds to pass, IV's to start or dressings to change in that room--and I was here to learn nursing . . . 

In Carol’s room I found that her mother had arrived from out-of-state.  She was regarding her daughter pensively.

“She won’t wake up,” she complained.

I repeated the explanation that the nurse had given us in report earlier, that Carol had been medicated with Demerol.

“When did they give that?  And how long will it last? Something’s just not right,” she continued.

Her questions were good ones.  I set out to find the "real" nurse to explain the mother's concerns, but the nurse arrived at that moment with a syringe in hand to give Carol another intramuscular injection of Demerol for her pain.  The busy nurse briefly attempted to reassure Carol's mother before rushing back to care for her other nine patients.

As I continued to converse with Carol’s worried mother, I became uneasy. She described a high-functioning independent young woman who lived in a group home while attending a vocational educational program in the city.  Demerol or not, the Carol we were observing didn't fit the girl her mother described.

Carol occasionally writhed and moaned, seeming to struggle to wake as her mother tried to arouse her. Her breathing was audibly harsh with a frequent moist cough.  The family doctor was alarmed at her appearance when he made informal rounds to check on Carol.  He wasn't in charge of her hospital care which was in the hands of the attending physicians who were on staff at this hospital, but he asked that the chief trauma resident be called to see her right away.

Before the staff nurse could return to Carol's room, the senior trauma resident appeared at the bedside and started questioning me.  He examined Carol while I slipped out to get her nurse who told me she would "be there as soon as she could."

Awkwardly, I waited with Carol's mother as the resident considered Carol.  He wondered aloud why she hadn't gone down to the OR earlier as scheduled. I reminded him of the fever and as he listened to her lungs, I casually pointed out the petechiae, which was more diffuse across her chest now.

The resident was suddenly abrupt and to the point, it seemed he'd slapped the last piece into a puzzle. “She’s thrown a fat embolus from her fractured femur--get her to ICU stat.” Then he turned on his heel and was gone before I could say a word.

I had enough of the classroom experience in nursing to fear a pulmonary embolism (a tiny blood clot that lodges in the lungs), but I didn't have a great deal of insight into the prognosis and treatment for a fat embolus. The hours that Carol's condition had progressed undetected were haunting me.  Right away I knew that Carol needed her nurse, and I needed my instructor.

It took some time to find Carol’s nurse and convince her that the resident wanted her patient transferred to ICU.  She made the requisite phone calls to confirm the orders and set the wheels in motion so that the ICU would assign Carol a bed.  Meanwhile, Carol's chart was nowhere to be found.  It was misplaced somewhere on the surgical floor.  I nervously looked for the chart while the nurse arranged for Carol's transfer.

My instructor, aware of the unfolding drama, gave me a brief suggestion, "Just help where you can with the transfer." 

Carol's mother, numb with worry, was making phone calls to advise her family members of this turn of events.  A sense of urgency was consuming me as I returned to Carol’s room. Carol's nurse was still on the phone making arrangements for the transfer. Suddenly the resident reappeared and scolded me. “This patient should have been in ICU already! Get her there now!!”

But no such luck . . .  The nursing unit had their own procedures to follow.  They set about taking a complete set of vital signs, "It's required that we do so before transferring a patient." 

The nurse's aide who was trying to check Carol's blood pressure was having a hard time because, "This machine can't be right, her pressure's way too low." She went to search for a manual blood pressure cuff that affirmed the hypotensive state of the patient.

Carol’s nurse returned with a respiratory therapist who placed a pulse oximeter on Carol's cool, pale finger and advised, “She needs oxygen, her oxygen saturation is only 65%!”  Her saturation should have been at least 92.  The oxygen set-up for transport through the hospital to the ICU floor would have to wait for a few minutes while someone went looking for the missing key to the metal portable oxygen cylinder. The precious moments SLOWLY passed as these tasks to make Carol ready for transfer were completed.

I felt useless as the evening nurse and an aide prepared the bed for transport. “What can I do to help?” I pleaded. 

“You can carry the patient’s bag of belongings and make sure not to bring her flowers, she can't have them in ICU,” the staff involved in this whole situation seemed snappy and angry.  I thought it was a waste of brain cells for the nurse in charge to even think about the flowers under the circumstances. In retrospect, I'm sure I was sensing the staff's anxiety and concern, and I have to believe they all shared my frustration with the obstacles that slowed the transfer to what seemed like a crawl.  

My neck flushed as we awkwardly maneuvered the Carol's bulky hospital bed into the hall and then, after all the delays, ironically took off running for the elevator leading to the intensive care unit. There wasn't enough room for all of us on the elevator.  Carol's mother and I rode together on an adjacent elevator.

The small ICU waiting room was overflowing with visitors waiting to be allowed in to see other patients. I said farewell to Carol's mother and urged her to call her ex-husband to let him know what was happening.

I'd never before been through the sliding doors that isolated the large intensive care unit from the rest of the hospital. No matter, I found Carol’s room easily. Nearly every nurse in the ICU was at her bedside, hooking up monitors, taking vital signs, putting in an additional IV, preparing suction, and hanging fluids.  I could see the resident doctor with his interns assembling supplies.  In a few minutes time Carol would have a tube in her trachea that allowed a mechanical ventilator to breathe for her. 

I layed down Carol's bag of belongings lingered in the background for a few minutes. Clearly Carol was in good hands, these nurses were calm and in control of the situation. 

Suddenly my shift was over--it was time to meet my instructor and the rest of the clinical group before going home.  But I was sad and miserable.  I went beyond my required textbook reading that night. Fat emboli and acute respiratory distress syndrome (ARDS) consumed my thoughts. I grieved for Carol's mother and lamented that I hadn't known enough to help expedite her care that evening.

Two days later as I skimmed the morning paper, I was shocked--but not surprised--to see Carol’s photograph smiling brightly from the obituary column.  I cut that little clipping out of the newspaper and pasted it into my tiny notebook of nursing tips.  To this day I still carry that notebook in my nursing work bag.  I guess Carol's legacy has been with me every day that I've worked as a nurse, now that I think of it.

Technically, Carol was never "really" my patient.  No medication cards, flow sheets, or care plan followed me to her room that evening and my education and experience to that point certainly didn't prepare me for the gravity of her situation.  Of course, ironically, it was the deepest and most vivid clinical situation I experienced as a student. I always recognized that I contributed little, but benefited much from this experience.  Many of the lessons learned are so obvious that they don't bear repeating.  

An obvious lesson that does bear repeating, on the other hand:  never assume nor underestimate any patient's baseline mental capacity.  Good communication with a responsible party who can provide definite information on a patient's usual abilities is absolutely vital so that care is not compromised or delayed in the event of important neurological changes.  That's Carol's legacy to me.




All rights reserved 2009 Carolyn Cooper MPH RN

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Case Study: H1N1 Swine Flu, my influenza experience

Is this really a case study? Okay, it's more of a personal accounting of the twelve days in May of 2009 during which I was suffering from severe respiratory influenza related to the H1N1 Swine Flu.  I documented the course of this illness because it was so weird and prolonged.  I decided to post my experience for the benefit of others going through a bout of H1N1 influenza.

Here's a rundown of my recent illness:

Day 1: Thurs. eve., May 14th. I noticed that tell-tale "tickle" in my chest and the urge to cough deeply. My husband the mailman had brought this upper-respiratory virus home earlier in the week. After four days of body aches, rest, and frequent cough, he was finally feeling well. I had planned to go visit my elderly parents for the weekend. With the symptoms beginning, I decided to re-evaluate on Friday morning. I didn't want to take them any germs.

Day 2: Fri. May 15th. Woke up feeling "icky" and immediately postponed visiting my folks. A bad headache, cough, body aches and really sore throat came on gradually through the day until I was officially sick by late afternoon.

Day 3: Sat, May 16th. Full blown sickness all day. My sore throat was severe. The headache escalated with every cough and my over-the-counter meds didn't make a lot of progress against any of the symptoms. Lemonade, Popsicles, and fitful sleep punctuated by strange dreams were the theme of the day. I emailed my supervisor to let her know I needed a substitute for my nursing shift on Tuesday.  The way I felt, it was obvious I wouldn't be well enough to be around either patients or other staff by then. I assured her I'd be able to work my planned Friday shift, however.

Day 4: Sun, May 17th. The second day of "full blown sickness."  I was not feeling at all better this day.  I had no appetite at all, a very "icky" taste in my mouth, terrible sore throat, and a frequent cough with nasty green phlegm. My husband was again a huge help in bringing me fluids . . . I experienced constant muscle aches in the upper arms, thighs, abdomen, lower back, and what felt like spasms of deep bone pain to my left lower leg and right upper thigh. (I didn't have much headache from this day forth, however). By late evening I got out of bed and onto the couch to rest so hubby could sleep without being disturbed by my constant coughing, etc..

Late at night I felt well enough to putter around the kitchen briefly. But I suspected I was feverish and confirmed that with the thermometer. (Fever is nature's way of killing bad germs, so that doesn't frighten me at all by the way. I was hoping this meant the illness was going to peak and resolve). I began to experience chills and was generally just plain sick. I did take a dose of Tylenol (acetaminophen). My fever stayed in the 101-102.5 degree Farenheit range most of the night.

Day 5: Mon., May 18th. My highest temp was 103 degrees Farenheit at 6 am on Monday morning, but fever and chills stayed with me for several days. My cough was bringing up very thick, green phlegm. My plan this day was to call the hospital where I work to speak with the employee health nurse. I wanted her to know about my fever and influenza symptoms.  I also asked if our facility was doing any lab surveillance for flu among the employees. (We were not).

I also phoned my doctor's office to ask if they were interested in a sputum specimen for surveillance. (Again the answer was "no").  The nurse related my symptoms to the doctor, and advised that the doctor wanted to see me in the office based on my symptoms, but lab surveillance for H1N1 was only taking place in hospitalized patients in our community. There were no appointments available with my doctor on this day, and I honestly didn't feel well enough to get out of bed anyway so didn't even consider going to see her. I had my laptop at the bedside and felt well enough to write a blog note about my flu. I felt like a "wuss," because my health is robust, and I'm not used to being so fatigued and achy.

My only moments out of bed on this day were to visit the nearby bathroom. I caught a glimpse of my reflection and noticed my face was a waxy, pale yellow. I thought I looked jaundiced. My tongue was also, alarmingly, VERY PALE. I thought the fever had somehow left me anemic. For a moment I thought about checking the whites of my eyes in the mirror, but the room was too dark and the malaise made the hand mirror seem "too heavy." This was a day of feeling completely ill once again.

Day 6, Tues., May 19th. More of the same. I was again shocked to see how yellow my skin was as I passed the mirror. Once again, I thought about looking at my eyes with the hand mirror to check for icterus--but I simply lacked the energy. There was no noticeable improvement in body aches, sore throat, cough or fatigue. I stayed in bed, and was just up to soak in the tub briefly and use the bathroom. I had my laptop at bedside, but didn't have much interest in anything. Although I was technically "resting," it was difficult to get any satisfying sleep.

In the early evening, one of our cats was acting strange and hurt. It seemed like he'd been stung by a bee. We had no liquid benadryl for him in the house so I reluctantly dressed and went to the local Walgreens drugstore. I planned to grab a paper mask to wear in there, but they didn't have any. Not wanting to infect anyone, I made my purchase very quickly and immediately went home. Of course by then the cat seemed recovered enough not to need the medicine. I returned to bed immediately still feeling quite ill and coughing frequently with the constant sore throat and no appetite.

Day 7, Wed., May 20th. I had a feeling that I would not be able to work on Friday after all. I wasn't well yet--still coughing green stuff constantly. Still with a terrible sore throat. After no fever for two days, I started with chills again in the evening and a low grade temp of 100.5. I thought I'd better see the doctor the next day, just to get a note for work so they wouldn't think I was "playing possum."

Day 8, Thurs., May 21st. I was the patient in a mask at the doctor's office.  (Well, I did see one other patient in a mask). The doctor was surprised how sick I was.  She immediately acknowledged influenza and she also suspected possible pneumonia as a consequence.

New symptoms had also developed over the past 24 hours--my left eye was draining green pus. My temp was still hovering in the low 100's. My neck glands were swollen and tender. At the doctor's office I had a chest xray, throat culture and blood work. I told the doctor I felt 70% of normal--so much improved from earlier in the week. Still, the sore throat, cough, and malaise were lingering . . . I was prescribed antibiotic drops to instill in the infected eye.

I immediately returned home to rest. My husband kindly went to get the prescribed eye drops at the pharmacy, and while there he bought me a teddy bear. That's how pathetic I was--sick enough that my husband felt a teddy bear was in order . . .

Reluctantly, I had to notify my hospital yet again that due to this lingering illness I would have to cancel my next scheduled shift (on Sunday).

Day 9, Fri., May 22nd. My doctor called in the morning to give me some results. The chest xray hadn't been read yet by the radiologist, but the lab proved there was no bacterial infection in my throat. The unusual finding was in my blood work. My liver enzymes were alarmingly elevated suggesting that the influenza virus had battled with my liver and caused an acute hepatitis earlier in the week. My shocking yellow color on Monday and Tuesday was, indeed, jaundice.

I was actually feeling better this day . . . so much so that I decided to sanitize certain parts of the house. I focused on disinfecting my kitchen/dining area which included a thorough mopping of the floor and scrubbing of the sink, refrigerator, counters, and trash can. I vacuumed my living room including the crevices of the couch & chairs, did loads of laundry, changed all the sheets, and threw open the doors and windows to get fresh air in and germs out. I even cooked my son a light supper, but was totally spent from the activity before my husband made it home from work.

Overdoing it during that burst of energy really exhausted me. I took a 5-hour-nap on the couch before going to bed for a night's sleep.

Day 10, Sat., May 23rd. Because I had felt improved on Friday, I was optimistic that I'd be able to have a normal day. Instead I was once again very fatigued and my abdomen was very sore in the round ligaments from the constant deep productive cough. I mostly rested to make up from overdoing the house cleaning on Friday.

Day 11, Sun., May 24th. This was a day of actually feeling better for a change. As it was Memorial Day weekend, I wanted to take advantage of a sale at the nearby Bergners store. I drove over, purchased my items, and came home. The air was so fresh, I spent time in our yard, checking my flowers and vegetable plants. The herbs smelled so good, it was inspiring. I got out some branch cutters and did some pruning.

Once again, I later found that that trying to resume my usual level of activity was taxing enough to exhaust me into a long nap. When I woke up hours later, I was suffering from positional vertigo. I've had this vertigo (in which it feels as if the room is spinning when I turn my head) occasionally in the past, but it's always rather disconcerting.

Day 12, Mon., May 25th. The sore throat was almost gone. My eye was better. I still had positional vertigo. The cough was what I call "moist"; it was nagging in spasms that interfered with sleep, but not bringing up as much phlegm. My need for napping was ridiculously high, catching up on a sleep deficit from the illness, I am sure. I still had occasional body aches and pains related to the flu (including the deep "bone pain" in my right thigh that actually persisted on and off for months after this illness!) My appetite was not back and the "sickish-taste" was still there. But, I felt like I was 93% back to normal. Fortunately, I had no scheduled days of work this week.

Day 13, Tues., May 26th. My most lingering symptom was still the cough and a vague, generalized pain in my chest, a constant presence over the past week or so that was annoying but not unbearable. I still had positional vertigo, but my energy and enthusiasm started to return and I was feeling interested enough to write for a while. I planned to call my doctor to see what the xray result showed. I was keenly aware by this point as to what an unusually peristent illness this had become. Because the symptoms had waxed and waned so much, I wasn't even confident at this point that I was truly over it yet. (I am certain that I've never been affected by an illness for so long in my adult life).

Follow up: My chest xray was negative for pneumonia. A week after the first blood tests, my liver enzymes had returned to normal. I was still coughing "mildly" and bringing up (by then) clear phlegm into the first week of June when my son graduated from high school. By the second week of June, I was completely well, except:  my job requires a great deal of physical exertion and I must say that when I returned to work, I noted a distinct loss of stamina after my illness with the H1N1 Swine Flu.

My H1N1 Phlegm:  I took this phlegm photo at the end of my May 2009 bout with H1N1 Swine Flu.  I was feeling quite a bit better at the time, but still effortlessly coughing wads of disgusting phlegm.  I know it's gross . . . my lungs were full of this stuff, and it was much worse earlier in the illness before I had enough energy to document it.

Search terms that bring traffic to this blog post.  As of March 2010 my search log continues to show me that this is my most-read blog entry.  People most frequently use search terms that include "lingering cough," "yellow (or) green phlegm," "H1N1 with vertigo," and "H1N1 with jaundice (or) elevated liver enzymes."  (Importantly, I periodically also see search terms that suggest individuals have developed jaundice after receiving the vaccine against H1N1).

You might find these relevant articles of interest:

This page from the CDC website explains when it is recommended to collect specimens for H1N1 surveillance. Obviously we want to have an idea of how much influenza is out there, where it is located, and the emerging patterns of the illness. At the same time, it's unwise to test everyone, everywhere for the illness. We'd be expending resources at a cost that doesn't give us any benefit. Influenza as a general diagnosis can be made based on symptoms. Antibiotics are not a treatment for viral illnesses like influenza, and anti-viral medications are not frequently used either. This is one of those illnesses that requires our immune system to fight the virus.

Here is a 2006 article explaining a relationship between Influenza and a bout of acute hepatitis: Systemic Viral Infections and Collateral Damage in the Liver by David H. Adams and Stefan G. Hubscher. (American Journal of Pathology. 2006;168:1057-1059.) See paragraph 2, Understanding Hepatitis in Influenza.

Want to review the basics about influenza?  Here's a link to my general information about the flu.
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Type 1 Diabetes and Grief

Elisabeth Kübler-Ross was a physician well-known for her observations about the grieving process. Her work was ultimately expanded to recognize seven distinct phases of grief. These stages are dynamic, meaning that one stage isn't necessarily resolved before we slide into the next, and we can backslide into an earlier stage anywhere along the way . . . Today marks the three-year-anniversary of my son's diagnosis with Type 1 diabetes. (This is the type of diabetes that begins during childhood and with which it is essential to regularly inject supplemental insulin.) In those first days, I felt detached, as if watching from afar all that was happening. As a nurse, Dr. Kübler-Ross' grief stages were well-known to me, and I could "feel" myself living in those stages at the time. I thought it would be useful to share my family's progression through the phases on this anniversary.

1. Shock. There are no fences in El Paso, Texas . . . well, very few anyway. Instead thousands upon thousands of rock walls neatly surround and divide neighboring properties. They all look pretty much the same, but the one surrounding the military RV park at the intersection of Ellerthorpe and Gerlich Streets is embedded in my mind. My son was a freshman at Chapin High School. I was picking him up after school one day in November of 2005, parked in my usual spot which happened to face the aforementioned wall. It had to have been seconds after greeting my boy that he remarked how thirsty he was, and in fact had "been thirsty all day." I felt like a rocket exploded in my chest, but it was just a burst of nurse-mom adrenaline. One part of my mind was fixed on that segment of rock wall, while another part (where the reflexes live) demanded immediate answers, "How thirsty? Did you have to pee a lot?" Something in my tone and manner brought out the disdain in my 14-year-old, who of course wanted to know why I was asking him such off-the-wall questions. I choked out a reply,"Because being really thirsty and having to pee a lot are signs of diabetes." He rolled his eyes,"MOM--why do you always have to be this way?" My answer, "Because I'm a nurse and a mom. Forget it, I know you don't have diabetes!!" But a seed of fear had just been planted in my soul.

2. Denial. Weeks passed and my boy was still thirsty. But we lived in the desert, and he was very physically active; he needed the water. And he wasn't urinating more than usual. He was hungry, but just what I would expect for a tall thin boy who was in the midst of a growth spurt. For months I'd been fixing him late-night-snacks to try to put some meat on his bones while he grew. His daddy and I were both thin and muscular at his age--no reason for our boy to be any different. So I cooked him big omelets and stacks of pancakes and enjoyed seeing him eat. He complained once about blurred vision while taking his final exams the first week of December. We looked for his reading glasses--the ones he had never worn . . . but we didn't find them and the blurred vision passed. I promised myself to get him an appointment for a physical exam over winter break from school, just to make sure all was okay. We didn't have a regular pediatrician, though, since my son was always such a healthy kid. Instead we relied on the pediatric clinic at the nearby Army hospital with occasional visits to local doctors if need be. A few days after Christmas on a Saturday, my son accompanied me on some errands. The errands included a drive through McDonald's to get him a huge meal and chocolate shake, shopping at the PX on Fort Bliss, and then on the way home a stop at Walgreens to get a few items including a simple glucometer to measure blood sugar. I wanted the cheapest one. I knew I'd never use it again unless one of the neighbors wanted to check their blood sugar sometime. I got the one with the fewest test strips. I knew I'd only need one strip. Just one strip to set my mind at ease . . . because my son was still thirsty, and the night before he had been alarmingly hungry. My son wanted Gatorade at Walgreens. He got a liter bottle and drank the whole thing before we got in the car to go home.

3. Anger. I didn't know I'd ever be mad at God. But I was. Very mad. I thought I had done my earthly job of protecting my son and wondered why God had let the devil harm him in this way? Sometimes irrational and often crying by myself, in the first days, weeks, and even months, I couldn't wrap my mind around the "why?" of it all. It wasn't fair that my good boy should have to bear the burden of sharp needles prodding his fingers and belly multiple times a day for the rest of his life. Not fair that his dreams of being a soldier or marine be suddenly unattainable. Not fair that the spontaneity of his life be interrupted by the demands of managing this condition. The cheap glucometer I bought at the drug store had recorded an initial blood sugar of 600 for my son (while mine was 90 and his dad's was 82). His second reading was higher. Perhaps during the months that his body's insulin production was ceasing he'd been this high before . . . but in any case, it was imperative that we get emergent care, because suddenly polyuria had joined polydipsia and polyphagia; the triad of classic diabetes mellitus symptoms was complete. I was mad at myself, too, thinking that I was to blame; revolted that I had not bought that glucometer sooner, worried that I had been neglectful of his symptoms. I was angry that all of my careful attention to the details of his well being since conception seemed to be irrelevant . . . I failed my child somehow in providing for a healthy foundation, I thought. What was the point of following Dr. Spock's advice, of getting every immunization on the day it was due and never missing a well-baby appointment? In infancy La Leche League would have been impressed by the way I nursed my baby, and the USDA wouldn't have had anything to criticize regarding the introduction of solid foods in his first year. But in this stage of anger, it all seemed to have been futile, because those things didn't protect him from the autoimmune insult that resulted in Type 1 diabetes as a teenager.

4. Bargaining. The ER nurses at William Beaumont Army Medical Center were great. They did everything that was indicated to begin reversing the diabetic ketoacidosis (DKA) that had started to set in. After midnight we were transferred to another hospital for overnight intensive care. I always say that my son handled every step of this entire illness with grace and maturity beyond his years--and so did my husband. It was me that was emotionally ripped apart by it all. While my son slept attached to the cardiac monitor and with IV fluids infusing, I laid on the reclining chair and urged myself to sleep--so that I could wake up and find that this was all a dream. I prayed that I could have the diabetes instead of my son . . . and tried to figure out other schemes for making this whole surreal chain of events "not be true."

5. Depression. We were absolutely blessed to have wonderful people in our daily lives to help take the sting out of this life-changing event. My son's Godparents, Ken and Shalla (another nurse in his life); my dear former charge nurse, Violet; our next-door-neighbors the Salvadors who are really more like beloved family; family friends Christine and G. Cartegena; and my darling friend and public health classmate, Ethel Martinez, a physician trained in Nicaragua who just so happened to be the main educator at the El Paso Diabetes Association. As I said before, my son handled this situation with grace, but in looking back at photos taken on the ski trip for teens with diabetes, he's wearing a very sad expression. I was so grieved about this for a long time, and I would easily cry about it. Sometimes it can still happen in certain circumstances, but rarely now. The depression aspect of this grief stage also caused me to cut myself off emotionally from some other friends and neighbors.

6. Testing. We looked for clinical trials for new onset of type 1 diabetes during this stage where we tried to figure out how to live with diabetes in our lives, and learn about what is going on in the world of medicine to try to cure Type 1. At the diabetes Ski camp my son received inspiration from Jim Berkebile of Animas Corp. Jim, also a Type 1, was a motivational speaker for the teens. (And when it came time a couple of years later that my son wanted an insulin pump--he would only consider an Animas pump.) Through Jim, we came to know about the groundbreaking work of Dr. Denise Faustman of Harvard Medical School. My son calls the shots on these issues--he was eager to participate in the preparation for the Phase 1 Trial of the BCG vaccine by donating his blood samples at the Faustman Lab in Boston.

My son with Dr. Denise Faustman at her lab in Boston where he  participated in her research to reverse Type 1 Diabetes.  Learn about Dr. Faustman's research at http://www.faustmanlab.org/.

7. Acceptance. My anger with God was short-lived, largely in part of the grace with which my child chose to accept this challenge. The first line of my nightly prayer to this day asks God to allow mankind to find the cure for autoimmune illnesses if it's his will, and I particularly ask his blessing for Dr. Faustman and her staff, because if successful her research will benefit a broad spectrum of autoimmune conditions--not just Type 1 Diabetes. All the people in this world have their burdens, and this blog certainly doesn't permit enough room to explain to what extent I know that my family has been truly blessed after all is said and done, regarding the ordeal of diabetes. We have been blessed foremost with caring friends and professionals--noteworthy are Dr. Christenson in El Paso, TX; Dr. Soler in Springfield, Illinois; and Deanna Lohman, RN, BSN, CDE. We have learned much . . . our family has persevered and our son is productive, healthy, and thriving.

Our medicine cabinet is stocked with 3-months worth of supplies for the Animas insulin pump, glucometer test strips, and other things that a registered nurse wants for her family . . .

 

A Glucagon injection kit for a serious emergency of low blood sugar has a place in the refrigerator along with a tube of cake icing, which is also helpful in quickly bringing very low blood sugar up quickly.



New, fresh Humalog insulin is prominently featured in our frig, but for peace of mind--no old drop of insulin is ever discarded . . .