The real cost of healthcare

So, I know that you are not a typical patient, Miss M. But, I’m thinking we could make a research study out of your healthcare bills. You just turned 14 months old, and your total medical expenses paid out to date is around $300k. The majority of that cost (I’d estimate 95%, without actually looking at the itemized lists) is composed of hospital bills.  The doctors receive very little.  We are sometimes astonished by how little they receive, and how many of their bills are denied by insurance. I really don’t know how they manage to make a living at it (I guess that explains the long hours…). Your dad calculated that the hospital charged $5 per mL for your saline IV transfusions during your most recent stays. If you need a non-metric reference – a mL is less than a 1/4 teaspoon. For saline.

I know there is a lot of discussion about health care costs in our country these days.  I don’t know enough about the economics and realities to understand our own hospital bills, let alone the entire nation’s hospital bills.  But from a personal perspective, I don’t feel that quality and value = expense.  Meaning, the most highly skilled and valued tasks/people/resources are not the ones who get the most money from our insurer. It’s the mundane things, like saline, that seem to cost ridiculous amounts.  Oh, I know, the saline doesn’t actually cost that much.  The hospital is charging us for something else, wrapped up in that saline bill.  Whether it is to pay for illegal immigrant’s hospital bills, or to pay lawsuit insurance, or maybe to even line their own pockets, is irrelevant.  It’s broken.  Smart people need to study this (I’m sure they are) and somehow get through the political rhetoric and media circus to get the general public to understand what is going on (because I don’t understand it).  I think it would take me 4+ years of multidisciplinary study to understand it.  But I wish I did, so that we could make certain we are being as economical as possible in your medical care.

As things are now, we feel that we don’t have a choice.  There is one children’s hospital in town.  All of the pediatric specialists in our town operate out of that hospital – there are no other options.  I’m sure the doctors feel the same pressure – if they want to work in our town, with children, they have to use the local children’s hospital, because “every” other pediatric doctor uses that hospital.  It would be difficult to coordinate care if they all worked at different hospitals.  My thoughts on this are likely also influenced by the fact that Miss M has not received the best care at this children’s hospital.  It’s staffed by young nurses, with minimal experience, who are more interested in texting than in looking after their patients.  Miss M has almost died twice under their (insanely expensive) care.


From the brink of being overwhelmed

Well.  We made it.  Miss M’s palate surgery is over (17 days in the past at this point, to be precise).  Recovery was hard, oh so hard.  At some point, mid-recovery, I wrote this:

Miss M simply will not eat.  No syringe, nor cup, nor spoon, filled with juice, pedialyte, milk, melted ice cream, nor sugar water, darest pass her lips (or flailing arms and kicking feet, as the case may be).  No matter how many interfering relatives suggest we should try another cup, another liquid (we’ve tried them all, trust me).

And the hospital, omfg, the hospital.  Could those people care any less?  Could they manage to sanitize anything so our dear little Miss M won’t get sick, on top of her surgeries? Would it kill them to turn off an alarm or two overnight so Miss M (and parents) could get some much needed sleep? Who designed these hospitals anyway, why is the bed a 18″ wide gym mat, and why are there so many windows letting in the hallway light at night?

Miss M has been in the hospital three times, a total of 7 nights, since her palate repair. She came down with some sort of enterovirus which produced painful lesions in her mouth and a high fever.  Two days after her palate repair.  She’s 10 days out, and has yet to drink enough to stay hydrated on her own.  She was listless and in pain for 9 solid days.  We came home from the hospital, hopefully for the last time, late last night.  All she has done today is sleep.  She didn’t sleep more than 90 minutes in a stretch at the hospital, she slept 12 hours straight last night.  Still struggling to get her to eat.  We’re at 8 oz of pediasure for the daily total (it’s 4pm).


Luckily, we did stay out of the hospital that time.  It’s been a week since our last hospital stay.  She’s finally eating a normal amount, and has almost gained back the entire pound she had lost off her 18.5 lb petite little body.  She’s lost some spunk, though.  Still waiting for that to return in its entirety.

One year ago today

Today is Miss M’s first birthday.  Last year at this time, I was sitting in a cold movie theater on a hot day, watching some forgettable action flick with your dad.  Your brother was at school, and your grandma was at our house.  We were due at the hospital at 3pm (me without food all day – hence the daytime movie date for distraction) for our 5pm scheduled c-section.

I’d really wanted a VBAC – well, sort of.  I felt like a VBAC was the right thing to do, but honestly I was scared of laboring after the experience I had with your brother.  I do not think, without modern medicine, your brother would have made it out alive.  We found out after his delivery that he was growth restricted and my placenta was 1/3 average size.  He was also almost 2 weeks overdue.  The attempted induction, followed by a dramatic emergency c-section with a nurse holding the monitor against my belly as I was unhooked from the walls and wheeled to the OR and prepped, waiting for his heart beat to recover after a contraction, with the anesthesiologist literally running down the hall -yeah, I didn’t want to repeat that.

So, when we found out about your clefting at our 20 week ultrasound, at first, we thought this wouldn’t change our labor plans.  But at the end, as I neared 40 weeks, we’d had one or two lower than normal growth scans, and one not so great non-stress test, and my doctor was getting nervous about my going overdue again.  So, we talked, and I agreed to a scheduled c-section the first business day after your due date, when I was 40 weeks and 3 days.  We did everything possible to get you out the week before – walking, stripping membranes – you didn’t budge.  I remember the voices in my head just screaming as I was being prepped for the surgery that afternoon – NO.  Wait.  I want to try an induction.  This isn’t right!  But at that point, it felt like I’d past the point of no return, multiple doctors and a whole staff of nurses was preparing to do the surgery and bring our baby into the world.

And, as it turns out, that was the best decision we could have possibly made.  I’m assuming other KFS babies have been delivered “naturally”, since c-sections haven’t been around forever, but I’m also certain that it leads to a long, hard, risky labor.  Your cervical spine and shoulders simply can’t move the way they would have needed to during delivery.  I’m sure we would have gotten you out, some how, but given I’d had a previous c-section and recovered fine, I’m now certain this was the way to go.  It’s strange, b/c that was the only moment during the last year when my instincts have been wrong.

Pre-op check list

We’ve been to see the ENT (yes, they are going to replace your ear tubes, the left has fallen out and the right is on it’s way, as expected), the cardiologist (VSD is 2 mm and PFO is apparently covered with a thin layer of tissue, so things are improving in that respect), we’ve arranged for labwork papers from the geneticist, and yesterday we had your official pre-op appointment with the craniofacial surgeon’s office.

We’ve visited this particular office  many times, so we “know” all of the receptionists, med techs, the nurse coordinator, and the PAs.  The office is shared with the orthodontist who fitted and adjusted your nasal-alveolar molding appliance (NAM) weekly, which you had from about 5 weeks until your lip repair surgery at almost 5 months old.  And then we’ve been in for evaluations, pre-ops, and post-ops for your lip repair.  So, we know the routine.  A pre-op appointment basically consists of a general physical for you (weight, height, temperature, blood pressure, blood oxygen, listen to heart, lungs and stomach sounds, look in ears and mouth), and an opportunity for us to ask questions.

Right now your palate surgery is scheduled for 11am on June 8th, though the exact time could change.  The routine is that the hospital calls the day before to give us the official check in time and all of the stages when we have to stop various foods/liquids, but I know all of the rules by heart and the phone call is just a formality.  We arrive 2 hours before your scheduled surgery time, 4 hours before arrival we have to cut off all liquids, 6 hours before arrival we have to cut off formula, 8 hours before arrival we have to cut off all solids.  With a morning appointment, though not a first surgery appointment, the only one that really matters is the cut off time for formula – and yes, we will wake you at 2:30 am and give you your formula so that you aren’t starving when we arrive at the hospital at 9am.  We take care of you that way, and you will likely be too distracted by the change in routine to even notice that you’ve missed your morning drink.  They are anticipating that you will be in the hospital 1 night, though it is not uncommon to need to stay 2.  You’ll be in the IMC after surgery (intermediate care – we know ALL of the lingo now, the nurse starts to explain what the IMC is and your Dad says “oh, we know, we’ve spent several nights there, it used to be our favorite until they almost overdosed her there” – your Dad is nothing if not blunt).  The IMC has the ability to resuscitate children – we know from experience that they’ll have a 8 1/2×11 sheet of paper taped to the wall above your crib listing all of the doses for your weight for an emergency resuscitation.  Unlikely, but due to the swelling of your mouth/throat after palate surgery, it’s a standard precaution.  You’ll have a stitch through your tongue for the first day, which lets them pull your tongue out of the way easily in case you have any breathing problems due to the swelling in your mouth.  You’ll be on IV morphine until about the next morning (we’ve requested dilaudid, since you tend to get itchy from morphine), and you’ll be on the standard T3, antibiotics, and a few doses of steroids to keep the swelling down.  You’ll have to wear arm restraints for 2 weeks, until they have seen you at a post-op appointment, to check the sutures before removing them.  Feedings will be similar to your previous surgeries, and for you basically there are no restrictions since you still only eat purees (anything that can pour is ok)!  So, now we hope that you don’t get this stomach flu that has been ravaging all of the kids/parents at daycare (your brother had it last week, I had it this week), but if so we’ll call them and let them know.

Your pre-op is over.  At this moment, the next “milestone” is your birthday party on Sunday.  So now we get to have fun.  I cannot wait to dress you in your adorable pink and white seersucker dress with the embroidered cupcake with a “1” on the front, which I asked your Grandma to sew for you (Grandma loves to sew, and you are her favorite model), decorate the house with all of the adorable things I’ve been collecting and making over the last few weeks, and have a lovely ice cream party to celebrate your first year.  You are a survivor, and a fighter, little Miss M, and we are going to celebrate!