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.


Time to add a new specialist

Your dad and I have been ignoring something for a few months.  Not really ignoring, but just not quite ready to take care of it.  But, it’s time.  Oh, if you’re reading this and are NOT already a parent, beware – you have no idea how often you will discuss your child’s bowl movements in the future.

So, Miss M has a chronic problem with constipation.  It began as soon as I stopped supplying breastmilk, when you were around 8 months old.  We tried cutting out everything but formula, prune juice, and pureed prunes, and you were still constipated.  So, reluctantly, we started giving you Miralax.  Through a lot of trial and error, we figured out that you needed a dose every 5-7 days.  Over the past months, we’ve seen the craziest things – I won’t give details here, but let’s just say you have a serious issue and it causes you a lot of pain and frustration at times, and it can go on for days.  And you don’t eat very well when you are constipated, and weight gain has always been an issue for you, so this is another serious side effect.

Now, you are drinking whole milk, eating a few more solids, and your constipation is even worse.  We’re still working through the trial and error process, to figure out what dose you need now, but I’m guessing we’re going to be giving you Miralax every day, or at least every other day.

And, we know it is time to start seeing a GI specialist.  Just to rule everything else out, see if the specialist has any other feeding or diet modifications that we might be able to implement to make things a little easier for you.  We haven’t heard of any GI abnormalities being associated with KFS, but who knows.  I think this is the last major organ system that we haven’t had checked by a specialist yet, so it is time.  As the nurse for our pediatrician said on the phone last week, when I called to talk with her about it, it’s probably a good idea to establish a relationship with the doctor, so when future problems come up, we have a baseline.  It’s funny, how we naturally assume we will have to see a GI specialist, at some point.

Your current specialist log, as of August 2012:

1. Craniofacial surgeon (every 6 months, between surgeries)
2. Neurosurgeon (every 6 months, between surgeries)
3. ENT (every 3 months)
4. Orthopedist (every 6 months)
5. Cardiologist (every year – yeah! used to be every 3 months)
6. Geneticist (every 6 months)
7. Craniofacial orthodontist (saw regularly during your first 5 months before your lip surgery, now we won’t see her again until you’re school-aged)
8. Opthamologist (saw once, no followup!)
9. Dentist (technically, everyone should see a dentist every 6 months; Miss M’s is part of her cleft team and specially trained to work with kids with craniofacial differences)
10. GI specialist (to be added – hopefully we won’t be on a regular follow up…)
11. Physical therapist (weekly)
12. Speech therapist (2x a month)

If you are counting, that is 16 specialist appointments during this coming year, not including therapy visits or standard well-checks at your pediatrician.  I haven’t counted the number of appointments you had during your first year, though I’m tempted to.  Just as a “Wow, we did that, that is where our year went”, kind of thing.  But, nah, I’m just going to keep looking forward.  Year Two, surgery-free, but lots of people still want to keep their eyes on you.

Feeling selfish

So, I totally understand that people who haven’t had children going through major surgeries can’t really understand what it is like.  I get that.  But, I hate that some make me feel selfish when I fuss over Miss M (not all, just a few, who really just don’t get it).  When I dropped the kiddos off at daycare this morning, I heard that there is a baby in her room who was throwing up, and there might be a stomach flu going around.  I said “Oh, poor baby D (sick baby).  I really hope Miss M doesn’t get it, her surgery is two weeks from tomorrow.” And the teacher said “we hope that none of the babies get sick”.  I held my tongue, but I really wanted to go into a ten minute explanation about why it would be particularly terrible for Miss M to get a stomach flu at some point within the next 2 weeks.  And now I just want to cry b/c I am thinking of all of those reasons, but I know to say them all out loud doesn’t help me *not* look selfish.

I don’t know how I’m going to make it through the next 2 weeks.  This is Maddie’s 3rd surgery, and will be her 18 and 19th nights at the hospital in her first year, (assuming she doesn’t get a stomach flu immediately before and we have to postpone), we are old pros at this, but we haven’t had great pre-op/hospital/post-op experiences.  And I’m just feeling like I’m going to lose it.

E-mails I have sent

Dear Nurse Coordinator for the Surgeon,

Of course after our appointment with the team on Monday, I thought of something.  I know we have mentioned before that Miss M’s ears are very asymmetrical (her whole jaw line is, but the ears are the obvious part).  First, is a corrective surgery an option, and second, if so, at what age would we likely be thinking of a surgery to improve her ear appearance.  Personally, I’ve grown to appreciate her asymmetrical-ness, but as an adult with a cleft lip, I also realize that at some point she’s not going to be so thrilled with them.  If there is something we could do while she’s young, we of course would want to explore that option.


Miss M’s Momma


(6-7 years of age was the answer, btw)