Day: April 14, 2015

Three of Four

Yesterday, I packed a “bug out bag,” loaded Dylan into the car and made the 80 mile trip to Seattle. We were heading in to get a blood draw, look at numbers, and find out when we would start his last round of chemo. The “bug out bag” was along because sometimes these doctor’s appointments turn into a stay in the hospital for a bag of red blood or a bag of platelets. It takes about two hours for a bag of red blood to be infused and a half an hour for platelets, but it takes hours and hours to get the blood ordered and hooked into Dylan’s port, so I left home expecting to be gone for a good long time.

Dylan is a grump in the morning, this has always been the case, but chemo has added to his lethargic morning routine. I woke him up gently an hour before we were leaving so he could get up slowly, then 30 minutes later I woke him up again, when he finally started to move he needed a dose of pain meds. We loaded him up internally and then moved him externally to the car. These trips are tough on him. He gets headaches when sitting up too long, he is light-sensitive, loud noises bother him, and can be a demanding diva when his needs are not met. These drives have not been my favorite part of his treatment.

In 1997, Dylan and I drove across the country so I could study the poetry of John Keats and William Wordsworth at Kenyon College in Gambier, Ohio. (He was 3 1/2 at the time, so I did most of the driving.) It took us five days to get there. Dylan sat in his car seat in the back surrounded by all the stuff I thought we would need to stay in a dorm room for a month. My wife and new-born daughter flew out to Columbus a few days after Dylan and I arrived at the college. These were the days before cell phones and daily internet updates so what I remember of the trip is stored somewhere in my head. There were long days of driving, stops at any place that looked mildly interesting, and hours of talk centered around dinosaurs. The long days were strung together by hotels stops in Missoula, Miles City, Fargo, and Madison. We arrived in Gambier late on July 3rd, got our room set up, and went to a parade on the 4th where lots of candy was tossed from firetrucks. We spent the first few evenings playing whiffle-ball and being amazed by fireflies. These were the days when disagreements were solved by me picking him up and carrying him where I wanted him to go, that doesn’t happen much any more.

In Helena or Butte we stopped at a connivence store to get me some coffee. (Long ago, kids, long before there was a Starbucks on every corner, getting coffee was done at places like 7-11.) As I was walking back to the car, coffee in one hand and Dylan’s tiny hand in the other, I heard a  young girl’s voice, “Mister. Mister, can I have a ride?” I turned around and there was a blonde girl in dirty clothes who looked like she might have been 12 years old. I’m not big into picking up hitchhikers because they don’t have a great knowledge of dinosaurs, but when she said, “I ran away and now I want to go home,” a little part of me knew I couldn’t refuse.  She looked harmless and scared.

“We’re heading east, if your stop is on the way, we’ll take you.” She said her home was to the east and so she hopped in and we started out of town, got on the highway, and then discovered that her east and actual east were two different directions. I don’t believe she was being deceptive, she just didn’t know which direction east was. Her home was 90 miles out of the way to the north. To stay on schedule I couldn’t afford to spend three hours driving around Eastern Montana looking for her house. I turned around, drove to the bus station, bought her a $14 ticket to her home, gave her $5 for lunch, and then left her sitting in the dark bus station.

A couple of times each day Dylan would ask, “Who was that girl? Why did we help her?”

I told him we helped her because that is what we do and I hoped people would help my kids if they were ever in trouble. Which is true, but what I didn’t say was that I wasn’t too sure the girl was going to head home. Was she worldly enough to know how to turn her $14 ticket and lunch money into a $19 ticket that would take her further away? Was she heading back to an abusive step-father? I guess I will never know but that young girl is probably close to 30 years old now.

Eventually, Dylan and I got to Ohio, but there were days where the confined space and frustration of being cooped up got to us. Lately there have been a few times I have felt that frustration rising in me again. Yesterday, we missed the ferry by about two minutes and had to wait an extra hour in the car. When we got to the doctor’s office it took longer than usual to get his blood drawn, and by the time we arrived for our appointment Dylan’s pain meds were wearing off. He was having trouble being nice and I did my best to rub his back and soothe him, but I was getting agitated with everything.

He was examined. The nurse said the blood work wasn’t done yet, but he should expect to get a transfusion of some kind and then the doctor came in and took a look under the hood. We kept waiting, we turned off the lights in the room and Dylan laid down on the examining table. I rubbed his head and then the blood work was in. It was fantastic. All his numbers were way up. I was super happy, but Dylan was in pain and in no mood to celebrate. We would not have to come back to the hospital for two weeks! We did not have to do any blood work while at home!

We left the office and had to wait a bit for a new prescription so I asked Dylan if he wanted to get something to eat while we waited. He could eat out because his numbers were so good. “I only want fries,” he said.

“I’m not going to McDonald’s. Isn’t there anything else you want?”

“I want fries. I’ll wait in the car.”

“I’m not going to McDonald’s.”

“I want fries.”

“That McDonald’s is the worst place in the world. I’m not going there to get you fries. Isn’t there something else you want?”

“I want a large order of fries.”

I was very, very, very, very unhappy. (Remember how happy I was ten minutes ago?) I left Dylan in the car and marched the two blocks to the worst McDonald’s in the world. It wasn’t really the fries, but it kind of was the fries. I wanted to celebrate. Dylan wanted fries. I wanted to sit down in a nice place and have a full meal. Dylan wanted fries. I did not want to go to the McDonald’s where all the homeless people spent their quarters, but Dylan wanted fries, so I went there, got him his damn fries and marched back to the car.

We spent the drive home not talking. We tried to talk about what happened, but I was just too mad and needed to have some time to run into the forest and scream until my voice was raw, but instead I drove home and Dylan slept.

We have one round left. Dylan is healthy. Spring is here. I might be able to go back to work for a bit. Things are good, but those damn fries…!!!

The Money End of Things (1,031 words that might kill your will to live)

Dylan’s treatment has lasted over 60 days now, I know this not because I have tracked all of this on a calendar, but because we have had our first phone call from someone wanting their money for services rendered. If you haven’t been through a hospital stay in the US, or live in a country where they assume medicine shouldn’t be a for profit institution, you might think that paying the bills is a matter of having the money to do so, but it isn’t just that. We have been very fortunate that people in our community have been very generous and we have a pocket of money we can use to begin paying bills, but the real confusion comes in the multitude of bills delivered to our house.

When my wife took Dylan to the local hospital emergency room after the Superbowl we entered a maze that is more confusing than the one Jack Nicolson ran into in The Shining. Most of us assume we know how to get out of this maze but it isn’t as easy as one might think. It is a complicated maze, a confusing maze, and a frustrating maze. (Get ready for the most boring post of all time, that is unless you are an accountant or sadomasochistic.)

American insurance companies negotiate prices with hospitals and doctors for services. If they all agree on the price structure then they become what is known as “in-network,” if the doctor or hospital don’t like the negotiated price and want more they become what is known as “out-of-network.” Generally,  doctors who work within a hospital agree to be covered by the agreements by the hospital and are therefore “in-network” but that isn’t always true.

Insurance companies will set up “out-of-pocket” maximums for both in network and out-of-network providers. For our insurance the “in-network” maximum we will have to pay is $5,500. Once we pay $5,500 to “in-network” providers the insurance company takes over and pays the rest of the bills. The out-of-pocket max for “out-of-network” is $11,000…small print “with no cap.” No cap means that the cost for out-of-network providers will be our responsibility at a 50% clip. So, in other words, the cap for out-of-network providers isn’t a cap at all, it is more of a sun-visor. These “out of network” providers are the real wild west of this whole thing, because as far as I can tell, they are charging whatever they like and their prices are like car prices: open for negotiation.

Confused yet? Okay, let me add one final bit to the madness. When you take a sick child to the hospital that is “in-network” one would assume they would know how your insurance works and who they should contact for “in-network” services. Nope, that would make sense, like when they give you drugs and check to see if you are allergic to the medicine before pumping it into your system, but that doesn’t happen. Instead, services are provided and then bills are created. Whether those bills become the responsibility of the person getting the care, or the insurance provider, depends on the “in-network/out-of-network” thing. The number of moving parts in a hospital make it difficult to keep track of your financial situation as well as your medical situation. This isn’t the doctors’ fault, it isn’t the nurses’ fault, it isn’t really even the hospitals’ fault, in fact, I don’t know who is to blame for the confusion, but I know that most bankruptcies in the United States are medically related.

Still reading? (They have drugs for your condition. I don’t know if your insurance will cover them or not.) Here is the part that makes me mad. One would think that since you went to one hospital and were then transported to a second hospital, you would get two sets of bills with a total amount owed. Ha ha ha ha, that would make sense.  After the dust has cleared and the bills are starting to age like blue cheese, it is now time to dig through the hundreds of bills and figure out how to pay for everything. This isn’t as easy as it sounds because it isn’t just the hospitals who are billing, it is also individual doctors and services. For example, an ambulance drove Dylan from Port Angeles to Swedish Hospital. I didn’t get to chose the ambulance. I didn’t request the transportation. The only thing I did was follow the ambulance to the hospital. It cost the ambulance $2,800 to travel 82 miles. It cost me about $40 including parking and ferry crossing. My insurance company will pay about half of that $2,800. (Again, this is not a plea for money, this is just to illustrate the insanity of the American medical system.) The bill says that it costs $77 per mile to drive an ambulance. That sounds excessive to me, especially since no medical aid was given to Dylan once he was in the ambulance. The hospital filled him up with drugs and packed him onboard. The ambulance drove Dylan to the hospital and did nothing else. Would I have been able to drive him to Swedish in our car? I don’t know because after I found out my kid had cancer I wasn’t thinking about how to save a couple bucks.

When I called the insurance company to talk about how all this works, they were very helpful but they continued to say something that I just don’t understand, “You should always check to see if the services provided are covered.” Really? I should do that every time? “Hey, guy about to poke a hole in Dylan’s stomach, are you in the First-Choice network? How about you technician standing next to Doctor Pokey? Is this MRI covered? Is this ambulance part of…” This line of thinking works when you are going in for breast augmentation, or having a knee replacement, but for emergency care it just doesn’t work.

I have always been a proponent of universal coverage. I know Americans believe that will lead to substandard care, waiting periods, higher taxes, and doctors who can only afford three BMWs, but I think anyone entering into a hospital for care agrees that something must change. I do.

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