Who cares?

WARNING:  That which follows constitutes a “maniposto” I started as an exercise in venting and now plan to share with a hospital administrator or two.  It’s nowhere near as funny, lighthearted, or short as my posts generally strive to be (I know, that’s why I said “strive to be”) and instead resembles a manifesto, only bloggier.  It will also answer to “momifesto.” If you’re new to Viv’s blog, I highly recommend starting with a different post!

Myth and Mismanagement (Introduction)

The medical profession operates pursuant to a fallacy:  that competent charting renders a patient’s care transferable.  This myth is clearly born of necessity, since all doctors must sleep and some even have a life.  But the simple fact that no one doctor can provide twenty-four hour attention does not justify the blind faith medical administrators place in record-keeping, referrals/consults, and triage.  Hospitals and the doctors associated with them, despite their best personal efforts, currently fail patients like my baby girl.  Only dedication of thought and resources to continuity of care can rectify the problem.

Those who rooted for our little expansion team from the beginning should probably skip the next section.  I recount each medical decision and the surrounding discussions to illustrate how Viv’s care was mismanaged.  I hope not to Monday morning quarterback (especially since I possess zero training in this sport) but to demonstrate the wide difference between the snapshot any given doctor viewed and Viv’s full length biopic, to illustrate the impact that gulf made on Vivienne, and to explain the need for a solution like the one I ultimately propose (again, if you’ve followed V from the get-go, you may want to scroll down to the “Squeaking Pressure” section).

Little Boat in a Shit Storm (Background)

Now eight and a half months old, Vivienne writhed and screamed her way through her first two fiscal quarters.  She failed to thrive from the get-go, eventually getting down under the third percentile of weight for length.  Her first pediatrician (at the Polyclinic) repeatedly told me that nothing was wrong with Viv (“babies get gas”), blamed a fictitious low milk supply for V’s agony, dissuaded us from consulting a gastroenterologist, and, most unforgivably, refused to see Vivienne until her scheduled check-up weeks away from my last plea for help.  The one thing that seemed to be of the slightest interest to her was Viv’s ptosis (a droopy eyelid) for which she referred us to an ophthalmologist.  The ophthalmologist examined Viv, concluded that her ptosis does not affect her vision or otherwise appear to be a cause for concern, and told us that V’s lid might grow stronger with time.  Meanwhile, Viv continued to deteriorate, and the pediatrician stubbornly held her course, prescribing medication for reflux only after Viv’s pediatric resident godmother visited and prompted me to request it.  Not until Viv had suffered for three months did we finally connect with Dr. Muir, a pediatric GI specialist at Swedish Medical Center.

After taking a history and clinically assessing Viv, Dr. Muir began treatment for the most common ailment fitting V’s symptoms, milk protein allergy, explaining that this course of action made more sense than putting Viv through a battery of potentially unnecessary tests.  She suggested contacting Walgreens Optioncare, a home care (i.e., medical supply) company, for the hard to find elemental formula that we would need to feed Viv for six days until my dairy-free diet could purge my breast milk of cow’s milk protein.  When Viv failed to respond to my casein-cleansed breast milk after several weeks, screaming with each feeding and increasingly bucking off the breast, Dr. Muir scheduled an endoscopy (taking a look and biopsies from the mouth down) and a flexsigmoidoscopy (taking a look and biopsies from the bum up).  Unfortunately, she canceled the endoscopy at the last minute, figuring it would be best to spare Viv the general anaesthesia experience if possible.  When the flexsigmoidoscopy showed nothing, Dr. Muir still thought it best to continue waiting.  She asked us to feed Viv only the elemental formula figuring that V could be so sensitive that even the small amount of unavoidable casein in my milk irritated her.  Two weeks later Viv refused food so often that her wet diapers stopped coming.  When we called Dr. Muir’s office, her nurse told us to go to the ER, either at Swedish’s large general hospital where Dr. Muir could see her – if Dr. Muir were in town – or to Seattle Children’s Hospital.  Not wanting to expose Viv to an ER full of adult maladies without the upside of seeing our doctor, we chose Children’s.

The staff of the Children’s ER admitted Viv after a relatively quick, thorough, and kind assessment.  Unfortunately, no one notified Dr. Conn, Viv’s wonderful new primary care physician, because the first pediatrician’s name still covered Viv’s medical records.  We even asked two different nurses whether we ought to call our doctor, but they both told us the hospital staff would handle it.  Because they did not, Dr. Conn did not round on Viv and coordinate her inpatient care as she otherwise would have.

The general hospital doctor serving in our pediatrician’s stead thankfully did the first thing Dr. Conn would have done; she ordered a gastroenterology consult.  The first GI attending assigned to Viv’s case (Dr. Burpee, a.k.a the Burpster), began a work-up by ordering a clinical swallow study, an upper GI series, and a videofluoroscopic swallow study.  The therapist who conducted the clinical swallow study (i.e., listened with a stethoscope as Viv ate) didn’t hear any milk finding its way into Viv’s lungs or “aspiration,” but said that videofluoroscopic swallow studies sometimes prove her wrong.  When the upper GI series revealed a diaphragmatic hernia, the medical team transferred Viv to the surgery service to fix it.  The surgeons said that once they repaired the hernia Viv would probably be eating like a normal baby in five days.  The videofluoroscopic swallow study was canceled.

When we happened to run into Dr. Burpee while Viv was under the knife, he recommended that I go ahead and breastfeed Viv after surgery.  Though he first advised me to stay on a dairy-free diet, in the same brief conversation he changed his mind reasoning that they’d found the problem and there should be no reason not to eat casein now.  I continued to eschew dairy just in case, but breastfed Viv after her surgery.  When she repeatedly bucked off in pain, just as before, we alerted the doctors and I immediately stopped breastfeeding.

By that time, a new GI attending had taken over.  When we asked that doctor whether Viv would benefit from thickening her formula, he told us she needed a higher calorie concentration, not easier to swallow milk which only babies who aspirate require.  He discharged Viv, hoping that she would feel better further out from the surgery and with a prescription to treat cramping.  He told us that she would get tests and treatment just as quickly outpatient as inpatient (“BRA, HA, HA, HA, HA,” he now laughs from within his evil lair; just kidding, he’s a nice guy, a lying, I mean optimistic, nice guy), that the only other thing they could do for her at the moment would be to place a nasogastric (“ng”) tube to essentially force feed her, and that we could come back for the ng tube in a week if she hadn’t improved.  Only the fabulous surgery fellow, Dr. Kelly Mattix, pushed for us to stay until the doctors had a clue what ailment still plagued Vivienne.  Unfortunately, it wasn’t her call to make since Viv no longer fell under the surgery team’s purview (surgery transferred V back to the medical service when her hernia surgery didn’t fix her).  The inpatient hospital scheduler arranged an appointment with Dr. Burpee in the GI clinic nearly three weeks later and sent us packing.

When Viv showed no improvement in a week, still taking in less volume than she needed to stay hydrated, let alone grow, we went back to the hospital for the ng tube.  No one told us the potential downsides of this step (the second GI attending only hinted at these issues by saying the ng tube wouldn’t be a cure-all).  In fact, we received no literature or explanation whatsoever regarding the procedure until after it had been completed.  A nurse called and told us which entrance and check-in desk to use.  After a different nurse guided Ian through the tube insertion process, we met with the hospitalist, a general pediatrician who works with inpatients.  She told me to go ahead and breastfeed and asked us what we thought the feeding regimen should be.  No one explained the theory behind bolus feeding versus a constant drip, the difference of opinion over the advisability of night feedings, or the importance of continuing to encourage oral feeding.

The third GI attending came by Viv’s hospital room the next day.  She told us that Viv should get an endoscopy and gastric emptying scan immediately if V didn’t improve in the next week or so.  She said the hospitalist’s plan for feedings (six small boluses during the day and a drip at night) seemed fine.  Walgreens brought a pump, extra ng tubes, and feeding bags to the hospital.  We left with a box full of scary medical stuff, a pat on the back, and no plan for getting Viv off the tube or even just slowing the development of dependency.  “Happy Thanksgiving” to us.

At Viv’s GI clinic appointment a week and a half later, Dr. Burpee took a different approach from the third GI attending, figuring that an endoscopy wouldn’t show us much even if Viv did have an allergy since she only drank elemental formula and my casein-cleansed breast milk.  Sound familiar?  It’s the same as Dr. Muir’s pre-bum-scope stance in September.  Over the next month the Burpster ordered an abdominal ultrasound and gastric emptying scan, both of which made sense to do but ultimately showed nothing abnormal.  We saw Dr. Conn in the office with concern about ear tugging and a chest cough, and she said that all of Viv’s hacking sounded like it came from her throat, not fluid in her lungs.  Meanwhile, Dr. Burpee told us that Viv’s symptoms didn’t look like a normal baby with reflux and allergy, that her ptosis and the fact that she got sweaty with feeding concerned him, and that he thought cardiology should look for a problem outside the GI tract.  After the cardiologist cleared her, he and Dr. Conn sent us to neurology and then back to the ophthalmologist, searching desperately for an answer to the conundrum.

Each of these appointments took at least a week to schedule (running successively, not concurrently), and the other specialties only saw Viv that quickly thanks to Dr. Burpee’s and Dr. Conn’s insistence and other patients’ cancellations.  Regardless, we spent about a month getting a host of non-GI tests that all came back normal with one exception:  Viv’s oxygenation dipped a little low during her cardiology workup (I’m not counting her heart birth defect because it technically falls within the range of normal and should never cause any problems).  The cardiologist said the slightly lowered blood oxygenation could be a sign of aspiration, but we thought we’d already been told several times by different players that Viv didn’t take fluid into her lungs when eating.

In December, Dr. Burpee prescribed a new anti-spasmodic drug and told me to once again stop breastfeeding, having decided that Viv could have either such a severe milk protein allergy that my casein-cleansed milk nonetheless upset her system or an allergy to another culprit in my diet like eggs or soy.  In other words, he’d moved on to Dr. Muir’s October stance.  Before we could assess the efficacy of this new regimen, we got a second opinion from Stanford’s head of GI.  (Thanks to Dr. Conn’s intervention, Stanford fit us into their urgent clinic the week of Christmas.)  The Stanford doctor said that he had seen several cases like Viv’s and believed that she suffered from an assortment of fairly common problems.  He advised scheduling an endoscopy to assess allergy, requesting a pH probe to get a handle on the severity of her reflux, and upgrading to a gastric (“g”) tube as soon as possible since she’d already been on the ng tube longer than he would advise.  Later that day, Dr. Burpee called to report that he’d independently decided that V should get scoped in early January; he readily agreed to place the pH probe as well.

During the last week of December and first week of January, it became clear that either because of the antispasmodic, the return to a formula-only diet, or both, Viv felt much better.  The endoscopy Dr. Burpee performed in early January definitively confirmed that Viv suffered from an allergy in addition to her hernia.  While three of the four GI doctors at one point or another told us that this result wouldn’t have much impact on a baby already “maximally treated” for allergy, the news meant an immeasurable amount to our family.  For one thing, I stopped pumping.  For months I’d been feeding Viv from the bottle or tube as well as pumping for twenty minutes at least six times a day.  Now that we knew Viv wouldn’t be able to drink my breast milk any time soon, I could stop this insanity-inducing regimen without feeling guilty.  Secondly, some of Viv’s other symptoms, like the post-hernia-repair cramping and writhing, finally made sense.  With at least some of the puzzle pieces falling together we could stop frantically searching for a more complicated explanation outside the GI tract.  The pH probe showed that Viv’s reflux had subsided to a fairly normal level.  This information, too, while maybe not medically that significant improved V’s quality of life immensely.  We no longer propped her upright in a foam throne (her “wedge”) all day.  She learned to roll.

Though Viv smiled more and now rarely seemed uncomfortable, she still largely refused to eat.  She willingly imbibed about ten milliliters (mls) per feeding when she required fourteen times that to grow.  Dr. Burpee referred us to the hospital’s occupational therapy and physical therapy (OTPT) department.  The therapist we saw told me that the hospital “doesn’t do” long-term therapy and sent us to a non-profit.  The non-profit’s intake process took more than two weeks.  Since the first therapist we talked to at that outfit told us that Viv would need six months of therapy and should get a g tube right away, I left separate messages on the GI clinic’s nursing and scheduling lines trying to get a g tube procedure scheduled.  The Burpster called to say that he’d be willing to place a g tube if we so demanded but wasn’t sure Viv needed one.  We nonetheless pushed to get a date on the books.

When the non-profit finally assigned Viv a therapist, she told us Viv ate very well, said V may be fairly easily weaned off the ng tube, and convinced us to cancel the g tube procedure.  She came back the following week and provided a few recommendations like switching pacifier brands.  I started to realize that none of her recommendations seemed likely to get Viv off the tube.  Only after I asked some hard questions regarding her experience with tube weaning did she send us elsewhere; I’m still not sure how many weekly visits it would have taken her to tell us we needed additional help unprompted (though I’m sure she eventually would have).  She referred us to the nutritionist that Viv should have been seeing for the past few months, but with whom we were never told to book a follow-up appointment.  When we went to Dr. Burpee with this news, he sent us back to OTPT to a woman who specializes in weaning.  In other words, OTPT does “do” long-term therapy.  Unfortunately, the woman he suggested only works with older children.  Once we identified the hospital therapist who weans babies, Robin Glass, through another mom’s blog, I called to schedule an appointment.  Since she only works Monday, Tuesday, and Wednesday, we waited another week and a half just to meet her.

Meanwhile, the non-profit therapist suggested that we continue to offer Viv the bottle, distracting her with toys and songs as necessary, until receiving three firm rejections even if the whole process took an hour or so.  She also advised stopping puree (i.e., mashed up fruits and veggies) for the time being.  As we followed these instructions, Viv started taking about 120 mls over the course of an hour of cajoling in a downward spiral toward extreme parental goofiness.  She took in her goal volume (that is, the number we received upon Viv’s discharge; apparently, updating this figure fell within the MIA nutritionist’s purview) with the tube out for four days.  With her face unencumbered, Viv morphed into an even happier baby, made many new sounds (I theorize that the vibrations of the tube on her sore throat dissuaded her before), experienced less reflux (the ng tube both physically held her sphincter open and created a wick effect), gagged less frequently, didn’t vomit at all (with the ng tube in, she vomited at least once a day), and napped better.  She also began to self-soothe and engage in play by herself (with the ng tube in, we had to cover her hands at night and watch her like a hawk during the day to keep her from pulling it out).

When we finally met with Robin, she refused to develop a weaning plan until Viv underwent a videofluoroscopic swallow study.  Yes, that is the same test the doctors scheduled in November but canceled after finding V’s hernia.  Robin also required confirmation from one of Viv’s doctors that she could safely lose ten percent of her body weight and new goal and minimum volume numbers.  Trying in vain to get all our ducks in a row immediately so that we wouldn’t have to put the ng tube back down, I called and emailed everyone I could think of and asked them to put in the required order for the test and address Robin’s remaining concerns.  Unsurprisingly, end of day rolled around with no response, and we re-tubed her.  The next day Dr. Burpee managed to check off both the weight loss approval and crunch the volume numbers himself so that we didn’t have to wait for an appointment with the nutritionist.  Both he and Dr. Conn placed an order for the test that morning, but when I called the appropriate scheduler (Dr. Conn’s nurse gave me the number for radiology, but that department referred me to another) I was told to call a few times a day to see if the hospital had processed the order yet.  After two days and four phone calls, the order showed up in the computer system and we scheduled Viv for the first available appointment another week and a half later.

While we waited, we followed Robin’s advice of letting Viv take what she would in the first ten minutes of the feeding, offering puree, and then tube feeding her the difference from goal, a bit of a 180 from the non-profit therapist’s advice.  (The two of them still give us totally contradictory advice on a regular basis.)  We tried to get a plan with the two contingencies (normal and not normal swallowing) together so that we’d be ready to start therapy in earnest right after the test, but were told that’s not how it’s done.  Robin said that only after the results came in could we schedule a meeting to discuss next steps.

We looked into organized weaning programs, but the most well-known and successful program in Austria demanded a 480 euro registration fee before they’d even discuss Viv’s eligibility (not to mention the transatlantic flight required), Kennedy-Krieger won’t screen kids until they’re a year old and then places them on a three to five month-long wait list, and Stanford got rid of its weaning program.  I made another appointment with Robin and begged for more tricks to try in the interim.

All the while our home care company insisted on delivering so few supplies that Viv continually came close to running out of formula.  They expected me to return calls the same day and acted insulted when I had to end conversations abruptly due to Viv vomiting all over both of us.  When I finally spoke with the correct person, it turned out that Walgreens had old orders on file that didn’t account for Viv’s growth.  They had no idea we’d changed doctors and berated me for failing to inform them.  Clearly, the woman Walgreens assigned to Viv’s care never had a sick baby.

We recently switched to Children’s home care company.  It already appears much better organized (I can email supply orders), integrated (they can check the Children’s records for prescription changes), and parent-friendly (they understand the ridiculousness of insurance companies’ insistence on only covering precisely the amount of hypoallergenic formula a baby needs, providing no leeway for say, spilled milk, and they use projected volume requirements to provide a tiny buffer), but a recent exchange frustrated me to no end.  The woman in charge of ordering Viv’s supplies needed to fill in a blank in her paperwork requesting the amount and frequency of formula consumed by V.  It took a twenty-minute phone call – during which Viv got so frustrated that she purposefully induced vomiting in an attempt to get my attention (a normal and passing phase I’m assured) – to explain that we follow an aspirational schedule but that Viv’s consumption varies widely based on her willingness to take food orally, constipation, and vomiting.  I gritted my teeth as I patiently fielded questions and statements such as (I’m paraphrasing here) “do you think it could be a volume issue?” and “maybe she should have a gastric emptying scan.”  Seriously?!?!  That’s like asking Obama if he’s considered addressing the health care issue and saying, “Hey, I’ve got a great idea, how about a public option?”

When the swallow study date rolled around, the test revealed “dysphagia” meaning difficulty swallowing.  Viv aspirates little bits of milk thanks to the mechanics of her eating.  Moreover, the muscles of her esophagus are so weak that she must contract them about five times to move one bite of food down her throat.  In short, though no one can say for sure, Viv is likely physically incapable of consuming her goal volume orally for the time being.  With this information in hand, Ian and I began feeding Viv thickened formula which is more difficult to aspirate; she immediately responded by eating increased volumes.  We also rescheduled the g tube placement.

Her first two weeks after the surgical procedure, Viv struggled with increased reflux and frequent vomiting, only some of it self-induced.  She stopped pooping, sweated, and threw up ad nauseam (pun intended).  These phenomena combined to disturb her sleep, both during naps and at night (she slept for about an hour at a stretch max).  Apparently, the same “low tone” that causes Viv’s reflux and esophageal dismotility also leads to general bowel motility issues (in other words, her digestion grinds to a virtual halt with little provocation, stopping up her tubes).  While she should grow out of all three issues with time, they create a vicious puking-not eating-tube feeding-puking cycle for the time being.  Learning to use the g tube caused just as much frustration and profanity utterance as learning to drive a stick shift and put in contacts.  I got the hang of it in about a week (I’m comfortable speculating that I could now feed Viv through her tube and put in contacts while driving a manual transmission – desperate times call for desperate tooting of my own horn), but Viv kept vomiting.  She felt better, pooped, ate, and slept more.  A two-week-long tummy bug decreased motility.  She felt better, pooped, ate, and slept more.  Teething decreased motility.  She felt better, pooped, ate, and slept more.

I pursue every opportunity to get Viv off this roller coaster (think more “I feel sick and am gonna have nightmares” than “woo hoo”), attending surgery clinic for follow-up on the status and care of the physical g tube (because of Vivienne’s prior abdominal surgery, she had to have the g tube placed surgically, not through the less invasive PEG method that the GI clinic uses); seeing nutrition for instructions on how much to feed Viv; visiting Robin to request strategies for starting weaning once V’s stable enough to try (there’s still no plan in place); welcoming the non-profit therapist during weekly home visits; consulting Dr. Burpee for treatment of the reflux, vomiting, and constipation; scheduling appointments with Dr. Conn to monitor Viv’s hydration and general development; and emailing everyone involved probably much more regularly than they would like.

Squeaking Pressure (The Problem)

In a system where the squeaky wheel gets the oil, or at least gets it sooner, we do everything possible to squeak for our little wheel.  And yet, confirming the suspicions our Aunt Pam recently posted, deep in the darkest regions of my heart, I blame myself for her months of suffering, the new hole in her abdomen, and her continuing periodic discomfort.  Every night when I go to bed, I run through thoughts again and again like they’re distance markers on a quarter-mile track I’m jogging in my mind (if only my anxiety burned literal calories, I would’ve kissed the last of the baby weight goodbye ages ago).  I squander the rare hours that Viv sleeps peacefully, wondering whether we ought to have pushed Dr. Muir to perform the originally scheduled endoscopy, whether we should have known to withhold breast milk after the hernia surgery just in case, whether we could have opposed cancellation of the first videofluoroscopic swallow study, whether we should have been more adamant about staying in the hospital after the hernia repair until they figured out what else was wrong with Viv, whether we should have done more independent research regarding ng tube feeding, whether we should have pushed Dr. Burpee to do an endoscopy sooner, whether we could have requested the swallow study after the cardiology work-up showed a dip in oxygenation, whether we should have known to schedule appointments with nutrition, whether we should have gotten the g tube the first time it was scheduled or even shortly after the California appointment (the folks at Stanford say that the dysphagia likely could have been avoided by swapping the ng tube out for a g tube earlier; the Burpster disagrees), whether we could have figured out her motility issues sooner and known to expect weaning setbacks, and whether we’re failing to make a call or advance a particular course of treatment now.

In the world as it should be, the answer to all of my questions is “no.”  It simply isn’t fair to burden parents with diagnostic and treatment decisions of this nature.  Here’s the part that’s tricky to explain.  It’s not that Viv’s doctors didn’t make these calls, purposefully dragged their feet, or pawned the tough decisions off on us, it’s that we felt so indescribably adrift on the big-ass, murky lake of the health care system that we didn’t trust that any given doctor had received adequate updates or had reason to feel an appropriate sense of urgency, or that even if each individual player did, that Viv’s care as a whole benefited accordingly.  I’d better try to unpack that last sentence since it attempts to synthesize the many details recounted above and put my finger on that something which is rotten in the state of Denmark.

Picture Viv sitting (yes, she can sit now!) in a tiny rudderless boat bobbing at the whim of wave and current, in a shit storm.  The doctors serve as safe harbors promising wind-blocked white sand beaches and cute, clean margarita bars.  Ian and I swim next to Viv’s dinghy, trying to push and tug her toward the most inviting harbors.  Sometimes we finally make it to port only to find a rocky beach and dingy taco stand; or, maybe worse, the three of us barely wriggle our toes in the warm sand and sip our top shelf drinks (pricey organic juice for Viv; she’s sipping because it’s my extended metaphor, and I’ll be darned if my baby eats through a tube in it) when we’re told to leave and head for a different cove.  (You can also imagine Viv’s health as a football in a drill that prohibits a passing game with me and Ian scratching and clawing for each yard, blindfolded.  I guess that makes the dysphagia a safety for the other team.)

Ian and I swam our butts off making phone calls, scheduling appointments and tests, carefully compiling lists of questions, giving thorough histories, and doing our best to get the doctors talking to one another.  We know that our efforts greatly hastened the process; but everything has still taken longer than it should in my not-as-humble-as-it-ought-to-be opinion, and we still don’t feel sufficiently connected to all of Viv’s providers.  In other words, we have been forced to do so much coordinating of Viv’s care that we are left asking whether we could have kicked just a little harder, swum in a straighter line, or breathed a little less frequently.  Hospitals ought to give parents far more assistance navigating the winding waterways they create (doctors like to think only lawyers make bureaucracy – nice try guys; lawyers at least make it clear which hoops require jumping and when), and they owe children more continuity of care than even the most dedicated and prepared parents can provide (imagine for a second the order of magnitude difference between the helplessness we felt and that of someone with less education, less chutzpah, less facility with the English language, less familiarity with red tape, or less guidance from family and friend doctors – i.e., Charlie, the grandparents, and Kaitlin).

Shepherds (The Proposed Solution)

I think hospitals can do right by patients and parents while actually saving money and making their doctors happier in the process.  At the end of the day, my biggest gripes are difficulty getting information from doctors (including scheduling appointments and tests) and lack of information flow from patient to providers.  My idea is for hospitals to invest in case manager “shepherds” who do far more than the “family care coordinators” currently floating around doing only God knows what.  I envision the case managers serving as a Coast Guard escort for Vivienne’s little boat or maybe a berth where she can sit and wait for doctors and tests to come to her while Ian and I focus our efforts on her day-to-day comfort rather than advancing her medical care.

The first wolf (lack of communication from providers to parents)

My case managers could review the notes that doctors and therapists already write after each appointment, create a master list of next steps that includes which appointments need to be scheduled with whom and what other action needs to be taken by which providers (i.e., Burpee wants neuro consult; Robin needs hydration volume total), contact the appropriate doctor/therapist/home care company for each next step (i.e., call nutrition and inform them that Robin needs hydration volume total; update formula prescription in home care records with new hydration figure), contact the parents to give them a status update (i.e., I’m working on getting a volume total to Robin; it could happen today or it could take a few days but it will be in her hands before this weekend for sure), and schedule appointments and exams (i.e., Dr. Burpee wants a neuro consult.  I’m looking at the neurology clinic’s calendar here.  The first available is on Tuesday at 8:00, can you make it then?  No?  How about Thursday at 4:00?  I’ve spoken with nutrition.  They need to see Vivienne before they can give Robin a hydration volume total.  I see an opening next Thursday at 3:00 that would be right before your neuro appointment.)  The list of next steps and actions taken would be visible by the doctors who could add or alter items.

Parents could call this one person for an update on the status of all action items, including home care orders.  All of my calls to the hospital – including the ridiculously inefficient but necessary multiple calls to different numbers searching for the right person, calls that led to two doctors ordering the same test, and calls to see whether an order had been processed – would be replaced by fewer calls or emails to one person who understands and manages all administrative aspects of Viv’s case.  Doctors would spend less time assisting parents with non-medical questions.  (I know the Burpster has logged a considerable amount of time helping us wade through the mire, a task decidedly below his pay grade and outside his specialty.)  More importantly, parents could rest easier, knowing that if there were anything they could be doing to benefit their child, the case manager would have instructed them to do it.  Parents also wouldn’t have to deal with each new individual running down a list of ten questions and ideas they’ve already answered and heard.  Doctors wouldn’t have to communicate directly with one another to push along referrals or receive information regarding visits, eliminating pages which always delights doctors (don’t get me started on the archaic pager system; I always feel guilty paging a doctor and wish pages could be coded by priority – “enter 1 if an emergency is afoot, press 2 if your doctor can finish the bite on her fork before returning your call, enter 3 if she can put her kids to bed first, etc.”).

The case managers could also see that important protocols get followed.  For example, whenever asked to schedule a ng tube placement, the case manager could automatically arrange a meeting to be held prior to the placement during which the GI doctor, parents, nutritionist, and appropriate therapist discuss a feeding plan intended to minimize development of tube dependency and dysphagia.  In other words, for crying out loud, develop a strategy to get the tube out before sticking it down there and identify the key players in a wean and their roles at the outset.  Even more importantly, the case manager could make sure parents understand the ramifications of the procedure in the first place.  I would bet that the third GI attending did not come talk to us before placement of Viv’s ng tube because she erroneously assumed that the second GI attending had already discussed the pros and cons of the move with us.  Dr. Burpee probably presumed that one or the other of them had discussed strategic issues like developing a feeding regimen that best approximates natural baby intake, continuing to offer the bottle, and avoiding night feeds to the extent possible.

At the very least, the case manager could distribute literature that the hospital already produces like the pamphlet describing the different types of g tube, a resource we received only after Viv’s tube had been placed.  (We similarly discovered an amazingly helpful brochure describing ways to help your child cope with pain in a random sleeve on a random wall after all of Viv’s procedures.)

Fully fleshed out by someone with more time on their hands, these organizational duties would address information exchange between different providers and from the providers to the parents in a way that isn’t exactly paradigm shifting.

The second wolf (lack of information flow from patient to providers)

My other gripe, lack of information flow from patients to doctors, does demand a sea change.  My biggest complaint is that a sense of urgency is lost in translation between parents and any individual doctor and between any individual doctor and his successor, referer, etc. on the case.

Though I’m fairly sure the problem I describe isn’t (and I don’t intend my proposed solution to be) specific to pediatric gastroenterology, hurry seems even more scarce in that field.  Most babies GI docs see suffer from a malady that will disappear sometime during the first year of life.  A small percentage experience more complicated and acute problems like short bowel syndrome, but for the most part if doctors can keep a baby healthy enough to avoid lasting effects like brain damage, the issues usually resolve themselves.  (It seems that the passing nature of pediatric GI conditions also translates to a dearth of scientific knowledge, particularly compared to areas like cardiology and oncology, since parents sensibly do not enter these children into risky drug trials or other time-consuming research regimens, and drug companies and academics accordingly do not design them.)  Once they’re satisfied that no serious condition lurks, doctors appropriately prioritize weight gain and hydration above all else, but too many of them stop there, giving the temporary pain and suffering of the vast majority of their patients short shrift.

Many times Viv’s GI doctors told us to give x, y, or z course of action “a few weeks.”  Of course it takes a while to see the total impact of some treatments, but I’m still left believing that if one person had checked in on us every day, or even every week, and reported back on Viv’s status to all of the doctors involved, more would have been done sooner.  If a caring physician received a Facebook-style status update each day (e.g., “Vivienne is still writhing in pain, still vomiting twice per day” or “Vivienne:  no improvement whatsoever”), she would change course as soon as medically responsible or at the very least would feel some of the parents’ urgency and frustration.  A new doctor could scan down the list of daily updates collected by the shepherd and get a sense of what the patient and parents have been through and for how long.

The current state of charting and appointment scheduling simply doesn’t convey this type of information.  A patient sees a doctor and then gets sent back out on that dirty lake to be jostled about alone for some set number of weeks before seeing another doctor.  The chart includes notes that attempt to summarize the child’s state over time but their accuracy is constrained by the limited usefulness of the physical exam, the fluctuations in a child’s state (they could be feeling great during the ten minutes of the appointment), and the quality of parents’ memories and ability to communicate when put on the spot (I can’t tell you how many times I wished I could have a “do over” of an appointment to get in all the things I’d blanked on in the heat of the moment).  Not only would this information be helpful to doctors and relatively easy to get (it could even be automated, again, like Facebook, so that parents could, if they like and are able, log-in and enter or just email the five word max status update themselves without having to contact the case manager), but also it would take pressure off of appointments (I always seem to stall at the end of the appointment as if Ian’s hurrying me to checkout at the Whole Foods that takes us forever to get to), leave physicians less deluged by long periodic updates, give doctors time to mull over information (they currently receive information and try to come up with a plan all at the same appointment), and, possibly most importantly, make parents feel that their children have been heard without all the pressure to squeak.

(Minor point:  The shepherd could also reinforce hospital policies aimed at acquiring information from parents like asking about address or insurance changes and recapping what medications the parents currently administer during each phone call.  Two times now we arrived at an appointment with Dr. Burpee and surprised him when asked what medicines Viv receives.  He prescribed a medication and told us to give it to her.  No one told us to stop giving it to her.  He assumed we’d stopped.  We kept giving it.)

Bitching Promise (Conclusion)

Just to be totally clear here, while it’s frustrating that tests develop long queues, I don’t take issue with the two-week wait for the test; it’s the need to scramble to get in the queue after the doctor decides the test is warranted by phoning schedulers and nurses specific to the department in question that strikes me as ludicrous.  Similarly, I don’t necessarily assert that any test ought to have been ordered earlier, I just want the confidence of knowing that the doctors’ decisions were informed by my daughter’s day-to-day reality.  Perhaps the endoscopy and videofluoroscopic swallow study carried more risk than reward until the time they were actually performed, even knowing how much Viv suffered for how long.  But maybe they didn’t, and that possibility keeps me up at night.  If I thought her well-meaning and dedicated team of doctors and therapists had enough information and organization to effectively understand and advocate for Viv, I could breathe again.  As it is, there’s no way that they can without our constant vigilance, and I fear even that is not enough.

Assuming case loads were limited in order to avoid the resources trap that renders many social workers, public defenders, and teachers unable to live up to their promise, these shepherds would save hospitals untold amounts by eliminating parent calls and doctor work hours.  They would improve patient care and greatly alleviate the burden on parents of sick kids, which of course has a secondary impact on patient care (happy parent, happy kid).

I’m not wedded to my specific ideas.  I am, however, committed to constructively bitching about this problem until someone comes up with a continuity of care strategy that makes it clear who cares for a child at any given time, without the scrambling of parents.

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3 thoughts on “Who cares?

  1. oh, gail. well written, clear, thorough. i love the dinghy in a shitstorm image. the guilt you feel (as i did) is in fact ridiculous, as explained by the point you make in a later paragraph: it is unfair to burden parents with the responsibility for making diagnostic and treatment decisions. this is not what we trained for. i was aghast to realize i could piece together zander’s condition better than the MDs who supposedly see these things daily.

    your suggestions for care shepherds are good. chldren’s now has them in place for complex medical cases, but the need is vast for any kid who’s not just in there for the flu.

    so, onward and upward!

    p.s. i was intrigued to hear standford had a different criteria for how long is too long for an NG. here we go again, the flippin’ subjectivity of medicine. ok, i better stop now.

  2. hi gail, i feel your pain. thanks for squeaking like this.

    if you are interested in having Viv evaluated for a future weaning plan by Dr. Markus Wilken, give him an email at: mail@markus-wilken.de

    he will be in seattle may 13-28 to wean my son and another kid. trained in graz, runs his own practice now in darmstadt, has gotten over 400 kids off tubes. he will lecture to the feeding special interest group at children’s hosp about self-regulation weaning and tube management, may 27, 7-9 pm.

    sorry to be brief, trying to get kid + all feeding supplies and blended food on a plane to hawaii in a couple hours!!

  3. What a difficult time you’ve had! If only doctors believed that we know when something is wrong. My son’s doctors don’t seem to know why my son won’t eat either.

    I did find this website http://childrenandbabiesnoteating.com/ that has so much information on children who won’t eat, why they won’t eat, some of the tests that can be done and some of the treatment options. It helped me gain some clarity (and at least find the question to ask the doctors and the tests to push for) for my son.

    Best of luck to you.

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