Saturday, July 30, 2011

Nothing new

Keegan did ok through his colonoscopy and endoscopy yesterday.  A lot of bleeding, much like the last scope in June, but otherwise he handled it well.  As we have come to expect, they didn't visually see anything remarkable.  The only thing that looked strange was the tissue just below his stomach.  It should be a nice pinkish red color, but Keegan's was white.  Rather stark white, actually.  Also as we have come to expect, the doctors have no idea what it means, if anything.  At least, not one that they are sharing with us.

I am so tired of that.  We are extremely familiar with not having an answer for Keegan.  We have come to expect that every test we run will be negative.  Or "normal" when clinically he's clearly anything but.  That has unfortunately become our normal.  Frustrating?  Extremely.  New or different?  No.  And I'm tired of it.

But I am more tired of the apparent sentiment that if they don't know what it means, it's not a problem or a concern.  That is near #1 on my list of annoying things doctors say...or in some cases, what they infer without saying anything at all.  I am over your egotistical games.  If you don't know what something means, it should scare you.  It should scare you in an otherwise healthy child.  In one who's had a heart transplant, it should terrify you.  If you don't know, tell me that.  And you better quickly follow it up by telling me what you're doing to find out.  Pompously assuming that you know everything or can expect how things will go puts my child's health and life at risk.  I've seen too many children, including my own, end up in the ICU because of something I was told was not something to worry about.  Even worse, I have been at some of those children's funerals.

The only thing more disrespectful and belittling than that is thinking you have the right to control information about my child's health.  Tell me everything - the good, bad, and indifferent.  I deserve to know it all.  And when it's bad or it could be bad, help me learn how to deal with it.  Help me get ready to face it.  I need time to research and prepare myself for the bad.  If the bad never comes, we can all look back one day and be grateful that we made it through.  But the decision on whether or not something is worth worrying about, belongs to me and no one else.

The reality of these logical errors and communication flaws hit me with more force than ever before yesterday morning.  The cardiovascular ICU at Children's moved into the new tower almost two years ago.  That floor, where Keegan was when he was born and transplanted, is now the pre-op holding area for general surgery.  In all the times Keegan has had a surgical procedure since the move, we have managed to avoid his old room.  Room 18.  The largest room on the unit, isolated from the rest of the ICU in a back corner.  Until yesterday.

I thought I could handle it.  We had even joked about it in the past that there should be a flag on Keegan's chart that said he couldn't go to that room.  It was almost 4 years ago.  Surely the fact that it was just a pre-op holding room now would make it easier.  But it didn't.

I wasn't prepared for the cold smell that hit me when I stepped into the anteroom.  A mix of hospital cleaners, air ducts, and surgical soap that I don't notice anywhere else in this hospital.  The anteroom where I had to scrub up and don a gown, mask, and gloves just to be able to touch Keegan.  Where that dialysis machine sat for a week.  Where I stood helplessly watching Dr. Stromberg hover over my infant son with defibrillator paddles.

I wasn't ready to hear the whir of ECMO, pumps, monitors, and a ventilator come rushing back from the recesses of my mind.  To remember the sinking feeling of watching a team of 20 people transport a 5 pound child down the hall to the OR.  To feel the ache in my legs from standing at his bedside for hours upon hours since there were too many machines crowded around to manage a chair.  To relive the extremes of despair and joy that happened for us in those first weeks all crest like a wave in my chest in a single step into the room.

When I looked back into that room and saw my son's face peeking out at me once again, I was hit with many different realities.  Gratitude for the second chance at life that he has been given.  For every day that we have been able to hold him and learn from him.  For every person who has cared for him, physically and spiritually, that have allowed him to be here with us for three years, when we were unsure if he would live even three days.

But when I look forward from the memories of that room and where we sit today, I am confronted with a new set of fears.  This afternoon we will go home once again.  Another fever and another round of tests told us nothing new.  Keegan is stable today, and there is nothing we can do for him today to make anything better.  The fever will return soon, and I am afraid of what new challenges it will bring him.  I am afraid of the enormous tide of unknowns in his medical picture.  Pick a body system, and there is something unusual or questionable happening there with Keegan.  They are not something I can even wrap my head around today.  I am afraid that those unknowns will get the best of him.  That they will bring us back once more to the experiences we felt in that old ICU room all too soon.

I expect that our medical team should feel those same fears with us.  That they will validate our feelings and help us overcome them with facts and research.  Do not patronize me by looking at me and saying that anything is "fine" or that you're sending him home because he is "stable".  Acknowledge where we've been, what he's been through, and the uncertainty of what Keegan is facing.  Because he has looked "fine" one day and been in renal failure the next.  He has been ready to trial off of ECMO one day and desperately needed a heart transplant to survive the next.  He has had a strange, bleeding port that wasn't too concerning because he was "stable" one day and faced surgery to remove a port that was almost certain to cause a devastating stroke the next.  And those are just our experiences, not including those of the other precious families we know in this fight.  If you don't recognize that anything could change in the blink of an eye with these children, then you shouldn't be purporting to care for them.

So, I don't know where that puts us now.  This is nothing new.  Maybe this week will be different.  Maybe not.  We will continue to research our options here at home and elsewhere.  We will go home today and pray for guidance and wisdom and clarity as we face the coming days, weeks, months, or more.  We will continue, as always, to pray for Keegan's healing every single day.


Cody said...

Maddie - you have articulated so well the struggle of many.
You are a tremendous advocate for all transplant families, but also for the general population.
Thank you for voicing what many are struggling through in silence.
Your work with Children's and your blog are touching so many lives in uncountable ways.
I wish I had a magic wand to help Bug, and provide comfort for your family.
As always we continue praying throughout each day for Keegan and your family.
With love - Cody, Gary & Griff

Tari Anne said...

This post...your words...should be mandatory reading of every person in medical school and every year or two afterwards. There are doctors who remember that they are human just like anyone, then there are those who distance themselves from their pts/families. Coping mechanism? From their point of view, as a medical professional (only a nurse), a lot of families aren't like you. They don't take all information given to them and process it as they should. A lot of times families will take one piece of information and focus on it intently...when it isn't even the priority. I'm sure you know what I mean. You are definitely very intelligent in many ways. I wish the doctors would be as honest with you as they could. It's so frustrating.

Love and prayers to you guys...Kisses to Keegan and Audrey....they are such cute little peanuts!!

Stephanie P. said...

Keegan and your family are constantly in my thoughts and prayers. Your blog always helps me remember to ask myself...what would I want done if this were one of my two kids. It breaks my heart to see y'all struggle on a daily basis. I pray God takes you and your family into his hands and grants you the peace, wisdom and insight to help guide you through this medical and spiritual labyrinth.