Palliative Care

I want to be angry.

If you knew anything about grief or the vicarious trauma of caring for medically fragile children, you would even say we have a right to be angry.

I say “we” to imply Nathan also, but really I am just writing for me, and using “we” is an evasive tactic.  I can say that because I am a therapist.

The truth is, I don’t just want to be angry.

I am angry.

Our family all got some kind of cold bug almost two months ago.  Kyrie got it, too.  She saw the pulmonologist, who said she was fine.  She saw the ENT, who said she was fine.

I am angry at them because she was not fine.

I am angry at me, because I should have just taken her to the pediatrician, who would have looked at the girl she knows and seen something was wrong.  But her 18 month checkup is coming up, and two specialists said she was fine, so I didn’t worry about it and knew we would see the pediatrician in only a few more weeks.

Except she isn’t fine.  She has pneumonia.

The ENT in Utah, the one we love for his kindness to our little one, talked to us this morning about Kyrie, and his shared belief that she should have been trached a year and a half ago.

The damage done by 18 months without a trach cannot be undone.

He shares the burden with us that we cannot go back to then, that we cannot undo what was not done, that we cannot go back in time and give her a trach and gtube when she should have had one.

But he also can’t just trach her for us now, for several reasons.

Obviously, whatever is going on in her brain is one reason.  That just is, and a completely separate battle, but one that affects this one.

Another reason is that when a surgeon trachs a baby, he marries that child, he said.  He is responsible for the aftercare and the follow-up and the emergencies that happen with a trach.  And with a trach, if emergencies aren’t handled well, children die.

It’s that serious.

And because we have such passive aggression happening with our local specialists, and because they won’t do the actual trach surgery, he is concerned about doing the surgery here and then transferring her back into their care because they won’t have any liability pressure to care well for her.

That’s legit.

It scares us, too.  We are now the ideal: living minutes away from the children’s hospital in our area.  But ironically, she has no good specialist provider who understands the whole picture.

Her pediatrician does, and her nurse does, but not those who could give her the trach follow-up care we need.

In fact, her pulm and ENT have referred her back to Cinci, who won’t see us because of the book.

So now she has no specialists at all, almost.

Even if he does the surgery for us, which he would otherwise be willing to do, there is no one to follow-up with her back home after the surgery.

Those are the biggest obstacles that we cannot overcome: it wasn’t done when it should be, now there are other risks that make it not the best option even though it would otherwise be helpful, and we don’t have good providers for followup.

I called the only local ENT we hadn’t already talked to, one of mine, and he said it’s just too delicate and that he doesn’t feel comfortable following her if she gets trached.

He has that right, you know.  Doctors don’t have to see patients they don’t want to see.

Instead, she got a prescription order something for palliative care, to be sure she is comfortable and not in pain.

Because she could die.

They said that when she was born.

So I am also angry at everyone who keeps saying she is going to die.

DUH.  We all die.

That doesn’t mean she can’t get help when a normal cold the rest of the family turns into a sinus infection because of her wonky sinus bones because of her incomplete facial structures.

That doesn’t mean she had to get pneumonia this time, not when it could have been treated easily.

That doesn’t mean we write off normal problems just because the weird problems are so complicated.

An ear infection and a clogged tube.  Don’t tell me you are the ENT and she is fine, when she has an ear infection and a clogged tube.

So I am angry about that, too.

And guess what else?  It’s not that simple.  The doctor who could follow her after a trach can’t because the hospital won’t give him privileges because managed care wants him to be the specialist in something else even though trach babies are part of his job.

Because the messed up managed care system makes it nearly impossible for doctors to do their jobs sometimes.

So that makes me angry, too.

And then I found out that part of why America is going crazy about jaw distractions instead of trachs, which is very-very-very-different than jaw-distraction-as-needed with a trach-as-needed, doesn’t have anything to do with research.

It’s because a hospital only gets $500 for a trach surgery.

But for plastics, they get a hundred thousand dollars.

And that makes me more angry than anything.

That is messed up.

I share in our book, Keeping Kyrie, about how “we are not interested in paying a hundred grand for tinker toys.”‘

So yeah, I’m angry.  I am angry that bad doctors give good ones a bad name.  I am angry that bad politics won’t let good doctors do their job.  I am angry that money hungry crazy people won’t let my baby breathe because bad politics have forced them into corners of unethical behavior because doctors can’t get paid for doing their job anymore.  All of that makes me angry.

And all of it matters.  And all of it needs to change.

But I can’t change any of it if I am only angry.

I can’t advocate, or effectively share our call for change, if I am only spewing the negativity of ugliness in a way that isn’t helpful.

Justice happens.  It does.  Natural consequences play out.  Do you know what else happened today?  Anber and Kyrie’s biological mother got sentenced to 11 years in prison.

I will be honest and say that that felt pretty good on a day I was busy being angry.

I will even say it’s a relief that my girls will be safer for a time while she is contained.

But that doesn’t change anything.  It doesn’t create anything.

What matters is a trend of a whole generation of difficult airway babies no longer being given trachs, despite the developmental, cognitive, and psychiatric implications of ongoing hypoxia., because they are using one measurement to justify money rather than treating the whole child.

That’s something we can change, maybe, if we are not too naive, by gathering empirical and anecdotal evidence and reporting it in doctor language in doctor journals at doctor conferences in doctor ways.

We can create a story of what it means to a child to have their life saved by plastic surgery but it not being the same as having quality of life because they can breathe.

That’s what we can create: quality of life.

That’s what palliative care is about, really.

It’s not a deadline for death.

It’s about comfort.  It’s about a right for illnesses to be treated when something “normal” is wrong, despite everything else.  It’s about breathing well enough to go to school when she wants, to play with siblings when she can, to sing with Mama and Papa when there is enough air in her lungs.

It’s about living to two years old if she can, and enjoying every minute of it – even when that means supplemental oxygen so she can throw a good tantrum if she wants.

It’s about living today, which is already longer than they said she would, and about living well tomorrow, and the next day, and the next day, until she has no more days.  Maybe that means college.  Maybe that means kindergarten.  Maybe that means Christmas.

Maybe that just means being home.

We need you to share about the book, so that we can tell our story.  We need to tell her story so that we can have a platform for change.  We need to testify of the one who is the Giver of Life, no matter how many days any of us are assigned.

The kind of anger that only focuses on what cannot be changed about the past slowly transforms into resentment, which then becomes poison.

I do not want to be poisoned, and so must school my feelings.

“There shall be no disputations among you. …

“For verily, verily I say unto you, he that hath the spirit of contention is not of me, but is of the devil, who is the father of contention, and he stirreth up the hearts of men to contend with anger, one with another.

“Behold, this is not my doctrine, to stir up the hearts of men with anger, one against another; but this is my doctrine, that such things should be done away.”4

To be angry is to yield to the influence of Satan. No one can make us angry. It is our choice. If we desire to have a proper spirit with us at all times, we must choose to refrain from becoming angry. I testify that such is possible.

The kind of anger that is acknowledging injustice can be more effective in creating change when it is righteous indignation and used appropriately.

But you don’t have to be nasty to advocate.  Advocacy doesn’t have to be ugly.  Being a bully is neither effective nor productive.

Anger is almost always the outward expression of internal sadness.

“Anger management problems” are often the external version of “depression”.

If I am not to be poisoned, then I must creatively use opportunities to share our stories to help other children in situations similar to ours, or at least encourage those parents if we cannot change the world entirely.

But also, if I am not to be poisoned, I must acknowledge the sadness.

I am so very sad that our little one is so very sick.

I am so very sad that the light has left her eyes these days.

I am so very sad that there is nothing, absolutely nothing, that I can do to make it better.

I am sad that she had one mother that caused such a mess in her body, and another mother who failed her by not fixing it.

I am so very sad that such a brilliant spirit must endure so much in her struggle of mortality.

But it’s that brilliance that matters.

It’s the struggle that makes us shine, and eternity that makes it worth it.

About Emily

I am a member of The Church of Jesus Christ of Latter-day Saints since 2009. I serve as a Chaplain, and work as a counselor. I got bilateral cochlear implants in 2010, but will always love sign language. I choose books over television, and organics over processed. Nothing is as close to flying as ballroom dancing - except maybe running, when in the solo mood. I would rather be outside than anywhere else, especially at the river riding my bike or kayaking. PhD in Marriage and Family Therapy, and currently doing a post-doc in Jewish Studies and an MDiv in Pastoral Counseling. The best thing about Emily World is that it's always an adventure, even if (not so) grammatically precise. The only thing better than writing is being married to a writer. Nathan Christensen and I were married in the Oklahoma City temple on 13 October 2012, and have since fostered more than eighty-five children. We have adopted the six who stayed, and are totally and completely and helplessly in love with our family. Nathan writes musical theater, including "Broadcast" (a musical history of the radio) and an adaption of Lois Lowry's "The Giver". He served his mission in South Korea, has taught song-writing in New York City public schools, and worked as a theater critic for a Tucson newspaper. This is not an official Web site of The Church of Jesus Christ of Latter-day Saints.


Palliative Care — 3 Comments

  1. Emily, Turn your anger into action. You might start requesting a prayer before you even get started with a doctor. You have come through a lot in your life and this is just one more challenge. Heavenly Father knows you are up to the task and whatever it requires you possess the powers to do what needs to be done. Remember to take care of yourself as you go through this. Your smile will light the way for the rest to follow. Your mission here on earth may be to teach the medical profession to care enough to do their job. You only fail when you quit trying. You can ask them ahead of time how much they really care. It may take time but you can do this. Hugs, Helen

  2. As aparent who sufferedt the devestating losses of my 2 sons, I feel your pain & wrap my arms around you to give you strength.
    My friend in St Louis that experienced a similar journey as yours. Kristen Akin has written a book, Love Trumphs Grief. Her story might give you courage & answers she knows specialists all over the country.

  3. Emily, I mourn with you and feel of your pain. I’ve taken much from your struggle, particularly this post to ameliorate the trials in my own life. What I lack most is the reminder to the Thessalonians to be thankful in all things and a current testimony of Moses 1:39, this is My work and My glory. He’s working his plan and it’s all in it. Even our failings. No more self-kicking. You and I are Enough. Hugs and hugs and hugs.