This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.

This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.

The content might sometimes get a little heavy. As an understatement..


People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.

If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.

I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.

Welcome along!

Thursday, June 24, 2010

Navigating the Medical System

My little Oxford dictionary says a system is a "complex whole; set of connected things or parts." It also says that 'the system' is the "prevailing political or social order, esp. seen as oppressive."
Hmmm. Complex: check. Set of connected parts: check. Prevailing social order: check. Seen as oppressive: well, sometimes, right? Check. So I think we can safely say we have a "Medical System!"

Yesterday I had an interview to complete a study that our family has been in. One of the questions I was asked was "What do families mean when they talk about The Medical System?" (this is not an exact quote, just the main idea of the question.) That question really made me smile. I knew right away what the other parents were referring too!

I think the most frustrating thing about this "system" is that medical personnel seem to think it is transparent, but I am glad to find out that I am not the only parent to find it opaque. As in, more like a wall than a window. And then I just realized that I had to write a few blogs about this whole thing after all. I'm not really sure I have learned that much myself. I still feel pretty much totally lost and completely clueless as I muck along feeling my way in the dark. But for what it is worth, I'll write about some of my less than stellar experiences and maybe I'll find a nugget or two in there. Maybe?

I don't like to complain about my experiences in this medical world too much, or in any sort of "public" way. I do have a few blogs about my experiences in the medical world. If I didn't, I wouldn't be being transparent myself, for this is the world of Joel. But I really try, by and large, to stay more positive about it all for several reasons.

First of all: doctors and receptionists for doctors and everyone in between are first and foremost people. Just like me. So I know that they make mistakes, they have bad days, and sometimes they might be so immersed in their internal landscape that they really can't think about what is going on in my personal life. Just like me. I try not to hold anything against someone else that I know I myself may at one time be guilty of. And they are human beings, for all that they are in a profession known for it's compassion. None of us get compassion perfectly, day after day, year after year, either.

Second of all: these are the people I have to work with. And just like with your spouse, it is best not to go around complaining about them to family, in-laws, and friends, no matter what they are guilty of. You still need to work with them, and any negative feelings left hanging around in the environment will only make that harder. Best to deal with these situations quickly and try and move on with a positive attitude. Though I do have some friends that do hear my venting from time to time, as well as family members, I try and keep the griping to a minimum and remain positive about the people that I am "married" to for the duration of Joel's life, "til death do us part." Literally.

And these things really can come back and bite you in the butt.

(I'm going to relate some stories in a little "blog series" with names omitted to protect both guilty and innocent. Because I want to attach this disclaimer, and it is an important one: If I had met any doctors who truly were terrible doctors, the kind that would put your life in danger due to negligence or ignorance, I'd warn you about those people. But not once in the past two years have I met someone like that. These are just people who sometimes don't get how to help me quite right. I can forgive them for that one. )

For example, Steve and I had a metabolic specialist who was a nice person, but very busy. After one appointment where I came in and she breezed through without answering any of my questions because she was too far behind, but I was welcome to schedule a new appointment for my questions, whew - I just had enough. I asked to be switched to a different specialist. I tried to do this in a kind and professional manner. She is a good doctor in her field, but just was not able to do what I needed her to do. Fast forward about a year.

Now I am talking to a room of doctors about Joel possibly needing his tonsils out. And wondering if he did, if there was some way they could put him at the front of the line for the surgery, as waiting the usual six months would mean that the surgery would just be getting more risky as Joel's condition deteriorates. Guess who is the head of this department, the name they give me as the person in charge of ok-ing decisions like this? Yup. Same metabolic specialist. Doctors can wear more than one hat. And they can be in charge of a lot of things you don't know about! (Which is why this doctor was too busy for me!)

So now I am very glad that I did not send any nasty letters about this doctor. I am glad I tried to be nice. I am hoping that this doctor has no hard feelings about how I switched specialists. I am hoping...

You see? So first rule of navigating The Medical System is: PLAY NICE!! Seriously. Don't point fingers, get angry or shout. You seriously have to suck it all up and really be the adult here, despite the high emotions of the situation. (And believe me, I totally understand about the high emotional state these things can bring you to.) You have to be very careful about "tattletaling" (by which I mean trying to lodge a complaint, or telling other medical staff what a doofus your doctor is.) You really can't afford to burn any bridges by any temper tantrum type behavior.

It is a system, and even perhaps a political and social one. It's not like Burger King. You can't get fed up one day and start shouting and then march out and just take your business elsewhere. At least, not unless you are willing to fly out to another city, or country, anyway. Children's Hospital isn't that big. The doctor's know each other. It is a system of CONNECTED parts. The last thing you want is to have a note in your file warning that you tend to be a hot-head or fly off the handle.

Of course, it is your right to get a second opinion, or to switch doctors. It is just best to do so in a calm manner, with good grace and even a smile. No hard feelings.

I think most of us parents realize this. And possibly that is one of the things that frustrate us. In our times of crisis, when you feel your world is blown apart, you sort of can't help feeling that the people around you who are supposed to help your family will be able to do that. Or at least understand that if they can't help you, you are going to "lose it!" Because it is taking every effort just to keep from blowing apart yourself.

But though medical staff may realize this, and maybe a few of them might possess that super human ability not to take your outburst personally because they understand this, I really don't want to risk it myself. Negative emotions tend to reverberate for awhile. I don't want to put anyone involved in Joel's care in a state where the majority of their energy is being used to make that super human effort not to take things personally. I'd rather leave more positive feelings there, so that they can put their energy into other channels.

But it can be difficult. That is why my friends or family sometimes get to hear a long story about it later on, complete with the funny quips I wish I had thought of/had the guts to say and all the hyperbole I want to really lay it on thick. At the time I might have been close to tears. But later on, at home, my sense of black humour comes out as I retell the story, and I might even give a dark laugh. My advice? Count to ten and all the while tell yourself about how later on, in private, you are going to really let go, and tell a close friend your medical horror story.

In fact, it is just another exhausting part of taking care of a chronically ill child. So I could sure appreciate hearing that "The System" was something many other parents mentioned in the study. It was nice to know I'm not alone in it. As I wander through the fun house mirror maze, I'll have to start banging on the walls and calling out "Anyone else lost in here??"

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