Sunday, March 02, 2008

The Whole Truth

I guess this is just how it's going to be.
I thought about naming it (NaBloPainMo), but it already has a name: March.
I thought about fighting it, but it's bigger than that. March can be cruel.

I get enough questions about Elijah, that I realize the information I have shared on this blog is disjointed and hardly complete. I'm just slightly smarter than a reptile, so I also realize that I can never actually cover everything.
But it appears that I am about to try.

In the name of nostalgia, I have had that 'go through his things' need for the past few days. Of course, nostalgia sometimes means pouring over medical records that you were too fragile to read before, downing too much wine and muttering to yourself softly and unintelligibly as each page is discovered anew.

Oh, you don't mutter? Well I guess maybe that's just me.

When I started this blog, I had a few ideas about what I wanted to write about, and I no idea if I ever would.

During the better part of my first year of writing here, we were silently agonizing over the decision to pursue or not, a medical malpractice suit. This kind of thing really cramps my writing style.

Ultimately, we decided not to.

It was not because the attorney said that it would be horribly painful to re-live and it would be brought to the foreground of my mind.
I looked at him and tapped my forehead. "It's always right there," I said, "You can't make it worse."
It was not because we had been warned that, because he was a special needs child, we would have to defend his life and its' worth to strangers.
It was, pretty much for one reason that I came to realize after nearly a year of revenge fantasies
I realized, that the only acceptable outcome would have been for the judge to announce the verdict like this:
"These people are absolutely right. You messed up. And
you need to give their baby back to them right now."

Obviously, this was not going to happen, ever. Any reptilian brain knows that.

I know you think I am all saintly and altruistic, but really? So not. (muffle your snickers) Actually have very active part of self which is desperate for retaliation.

My son's doctor was genuine and kind. She was also overworked. She missed a detail in a surgical report. Hell, she missed the whole surgical report! She made a mistake. One that ultimately contributed to my son's death.

I know she felt awful -she came to the ER that morning, after he had died and she held us and cried with us. She felt awful that he was gone. She still had no idea of what had been missed, and neither did we at that point.

But still, I occasionally had dark times when I was in so much pain that I wanted to will more pain upon her, or at least to know that she was in some.

I got over that (mostly). I just wanted to write about it. And then I went to BlogHer 06 and happened to talk to a more experienced blogger than I was who also happened to be a lawyer. "WHAT? YOU CAN'T BLOG ABOUT THE PEDIATRICIAN! OMG, YOU CAN'T USE HER NAME! NO!! SHIT NO, NOT EVEN HER INITIALS! SHE COULD TOTALLY SUE YOUR ASS!"

Sue my ass?

Scared the crap out of me and pissed me off. Not the person, I actually liked her a lot. But her words absolutely inhibited my blog, since I had decided to publicly share those raw thoughts in my writing, and I absolutely did not want to censor myself.

So, the nostalgia. I was looking for the journal that I kept through the six week hospitalization for pre-term labor, but what I found were a few surprises.
A photo of Elijah while he was on HGH, looking horrible compared to his bright eyes a few weeks before...

...and a time-line chronicling every doctor's visit or medical notability in his life which I had compiled from all of the medical records after he died. Looking over it, I remember how busy we were. And this doesn't even include his many, many ECI and therapy (OT, PT) appointments...(this may be a good time to point out that he had no less than 33 doctor appointments in his 57 and 1/2 -not that anyone's counting- weeks of life.)

1-23-03 to 3-7-03 Mother hospitalized for 'pre-term' labor;
on record doses of magnesium sulfate for duration.

3-31-03 Elijah's birth; Watsonville Hospital/ birth weight 4lbs13oz
4-2-03 transported to Dominican NICU for testing and TPN(IV nutrition)/tests include high resolution chromosome testing (normal) MRI brain scan (normal)

4-21-03 discharged from Dominican Hosp. NICU by Dr.V.,
new pediatrician.
4-23-03 dr. visit w/regular doctor (at SCMF) w/Dr.V.
weight check (WC) 5lbs 6.5oz
4-29-03 SCMF/WC 5lbs 9.9 oz
5-6-03 SCMF/WC 5lbs 10oz
5-13-03 SCMF/WC 6lbs .5oz
5-20-03 SCMF/WC 6lbs 2.6oz
6-3-03 SCMF/WC 6lbs 10oz/ feeding concerns
6-17-03 SCMF/WC 7lbs
6-19-03 Swallow study w/ Radiology – Reflux not detected
6-27-03 SCMF/WC nurse visit/no data recorded
7-25-03 SCMF/WC /more feeding concerns
8-8-03 SCMF/WC 7lbs 15oz/ developmental
delays- discussed
8-28-03 Barium Swallow Study Radiology-LPCH – Occupational Therapy consultation (referred by Dr V.)
9-12-03 SCMF/WC 9lbs 15oz
9-13-03 Infant Development Clinic Hi-risk follow-up w/Dr K (referred by Dr V)
10-10-03 SCMF/ WC 10lbs5.4oz
10-20-03 LPCH Neurology appt w/Dr W (referred by Dr V) /TESTS ORDERED: bloodwork, incl test for MENKES SYNDROME (normal) and MRI of brain (12-1-03)
10-21-03 Urology Exam w/Dr K (referred by Dr V) /Dx: Bilateral
Undescended Testes, Surgery planned for Spring 04
10-23-03 LPCH/ Genetics consultation w/Dr.M. (referred by Dr V.)
Chromosome tests ordered (normal results)/No Dx
10-28-03 SCMF/WC 10lbs 6.1oz
11-18-03 Dr V visit/weight check (notes illegible)
11-25-03 SCMF/WC 10lbs 11.4oz
12-1-03 LPCH MRI of brain ordered by Dr W, Neurology (referred by Dr V)/ results cc’d to Dr V
12-9-03 Dr V visit/weight check (notes illegible)
12-16-03 SCMF/WC 11lbs 2.6oz /MRI at LPCH discussed over phone.
1-12-04 Follow up appt w/Dr W, Neurology/ Abnormal MRI but no Dx
1-15-04 Infant Development Clinic Hi-risk follow-up w/Dr I (referred by Dr V)
2-18-04 pre-op appt w/Dr K for UDT surgery
2-23-04 Surgery for bilateral undescended testes at LPCH– discovery of TRACHEOMALACIA by anesthesiologist & Dr. K, Urologist (referred by Dr V) p.41 of medical records.
2-26-04 Endocrinology appt w/Dr F, LPCH (referred by Dr V)/ growth hormone testing and eventual prescription for HGH

4-01-04 - Began HGH daily injections

4-25-04 SCMF/WC 12lbs 1oz Follow up on UDT surgery/endocrine evaluation/
discussion of surgery results (incl tracheomalacia)/ follow up on letter sent to
Dr.V re: needing more attentive care & faster response to our concerns re: hispoor reaction to growth hormone treatments
5-9-04 SCMF/ emergency visit – fever, Dx:
bronchitis, expressed concerns about tracheomalacia and bronchitis/ asked
about admitting him to hospital
/ Dr not concerned, sent home
5-10-04 Called SCMF with info that Elijah was doing worse/ call returned by Dr V’s nurse; Albuterol prescribed and administered
5-11-04 approx 2am, Elijah stopped breathing while
mother was on phone w/attending pediatrician/ 911 called, CPR administered by mother and EMT for more than 60 minutes, med-evac'd to nearest hospital Dominican/ pronounced DOA

3-25-05 meeting between mother and Dr V, in which Dr V. revealed that she wasnot aware of Elijah’s condition of tracheomalacia, never getting surgical report (2-23-04) from LPCH.

March can be cruel. In the name of vaguely protecting the doctor who blew it with a human error, I have fed my own anger which manifests each year as fears of this season. A whole goddamned season.

I can't keep it in anymore. I have no reason to.


Anonymous said...

Elijah knew love. He knew a soft touch, soothing voices, a mother's/sister's/dad's smile and happiness in his short life. You did all you could... even if the Dr. did not. If I died and had a sister and baby brother left... every time my Mom was sad I would want her to reach out for those kids and hug them tight for they are the same flesh and blood as I was and the best outlet for my Mom's abundance of love. I am so sorry for your grief.

Anonymous said...

What you went through and will forever go through is heart wrenching and unfair. You really should have sued. Would it have changed anything? Sadly no, but your son deserved some sort of justice. The reason parents should pursue some sort of malpractice suit is not to get "revenge", but to hopefully shake the doctor up enough so they do not make the same mistake with the next child. This doctor should not have been excused from the mistake that was made.

nailgirl said...

I agree with anon #2 babe. The sad thing is that we as your friends are helpless to say or do anything that can make you feel any better. All we can do is offer hugs and be here to listen. I absolutely love hearing about what a special amazing little baby Elijah is. No, you should not have to hold it in anymore. That is what his blog is here for :)

Mrs. Who said...

Ooooohhhh....I didn't realize he was more than a year old when he died. I was visualizing a much younger baby. How hard that must have been for you. Not that it would have been any easier if he was younger. But a whole year with sounds like you made that year as rich and full and loving as you possibly could. That's about all we can do for any of our children. However long we have them.

Anonymous said...

Usually malpractice cases involving children are settled prior to trial. I'm not sure how that is changed when a baby or child with special needs is concerned, but my suspicions are that they are not readily settled. My sister's son is 27 years old, special needs, non-verbal, loving and gentle. Everytime he must be hospitalized, she has to endure a gauntlet of hospital personnel trying to force her to sign a DNR on him (do not resuscitate). The love and life is not respected even by the caregivers responsible for saving them. Perhaps if every special needs malpractice was indicted, this would force a change. In your grief and loss it may not be possible for you to champion a cause. I understand and applaud any choices you make. You get a pass on everything Mama, because you are a unique survivor of a loss that cannot be articulated or understood except by others who have lost a child. I love that you write about your son. I like to hear about him, just as I like to hear about cell phone chargers, although I like the pictures that accompany his stories much more than the "hangman cord". My good friend had a daughter that was murdered and no one would talk to her about her daughter. It was so crazy! We do talk about her and share memories.

Lin said...

Wish I were closer and could just give you a big hug.

There is no reason for you to keep it in. I read every line of this posting, G, and can only imagine what all of you went through and continue to go through.


Mama Drama Jenny, the Bloggess said...

It hurts me just to read this. I can't imagine living through it, much less having such introspection and thought.

You are amazing.

Table for Five said...

Oh Gwen, I had no idea. I had no idea that there had been so many tests, so many doctor visits, the surgery, the missing post-surgical report. I'm finding myself at a loss for words over this. I wish I could be there to offer a big hug to you.

Cindy said...

This is so hard to read--obviously much harder to live through and write about. Jeez. So very sorry. A big hug to you.

Anonymous said...

How could that happen to you? To your sweet boy? It was painful to read in abbreviation - I cannot fathom how you lived through this. I imagine you would have endured more for Elijah. Mother love. When I read the 2am entry... I have no words worthy. Please keep writing about your gorgeous boy - I'll listen.