Thursday, August 30, 2012

What's a life worth?

This has been weighing on me for quite some time.  That unanswerable question that shouldn't ever  be asked but often is by doctors, politicians, and yes, even parents of kids with disabilities: what's a life worth.  I'm talking mainly about resources in terms of time, money, and level of care.  At what point do we say "enough is enough" and as one doctor suggested very early on, when do you "bring them home to die?"

Such a horrific question might never had entered my mind if not for two people in particular, make that three, that have seered words and images in my mind.  The first happened when I was a tech at Children's Hospital in Dallas.  A teenage boy came in with profound disability.  He was unable to communicate, walk, and mostly move at all on his own.  His arms and legs were full of contractures, causing him to permanently look like a turtle on his back.  He was there for a custom wheelchair seating system and I'll never forget him.  I remember looking at him, watching his mom change his diaper, watching her hook his tube feeding up.  He just laid on the mat and drooled.  That young man impacted me more than all the professors in the world could have.  All at once I loved him, pitied him, and was repulsed by him. I was disgusted at the beige goo being fed to him.  But as often happens with me and severe kids, I fell in love with him.  He, who could not even speak, pushed me into the profession I chose, and gave me a heart for those with special needs.  I don't remember his name but his face will never leave my mind.

More recently two doctors have brought up the cost, both monetarily and emotionally, of caring for a "medically fragile, technology dependent" child.  The first happened early on when we got home and I asked for more nursing hours due to being totally overwhelmed.  To my complete amazement this doctor denied it, saying any more would be too taxing on the health care system and went on to explain how she must be financially responsible when making these sorts of decisions.  I told her I just couldn't do this (care for Dominic and the other 3 kids) and she suggested I hire a babysitter for my other kids.  Punch in the gut.  This is the first time it was suggested that Dominic was not worth the cost of caring for him.  In her defense, I later found out she is having to fight insurances now because they are dropping all nursing hours from kids who are vent dependent, so she feels like she can't prescribe any more than the normal, recommended amount due to this backlash from insurance companies.  So really, it was insurance companies boldly putting a price on a life, not her.

Another doctor and care team we have discussed with us on multiple occasions the reality of the time that may come that we say "enough is enough."  They constantly prepare us for the worst and their job is to help us plan.  For instance, we need to think about the higher probability than normal kids of Dominic having a sudden cardiac arrest and his functional level dropping.  The haunting reality of having to make that decision to sign advanced directives are always looming over our head.  To that mind set I say "so what if his functional level drops, is he not worth all life saving efforts?"  In reality, this is a decision that parents have to make everyday.  I guess if and when we ever get there, we will know what to do.

Often times when we're in the ICU I think about all of what the ICU doctor's see on a daily basis. Children with awful injuries, who have gone from totally normal to virtually brain-dead mutated images of their former selves in an instant.  They see kids like Dominic, only sicker than Dominic, constantly in and out of the hospital, with no apparent "value of life."  I wonder what they think.  Do they see certain kids, with certain severity's and wonder why the parent still keep this child alive?  Do they secretly wish that child could be "put out of his misery?" 

At what point do you say a life is no longer worth living?  Some would say when that person no longer has "quality of life."  What does that mean?  Is a person with profound mental retardation who has no ability to move or speak or communicate have quality of life?  Does that person ever show any sort of happiness?  Does the "Turtle shell" boy I told you about have any "quality of life?"  Does he bring any joy to any one's life?  Does he feel joy?  Does it really matter?  People say all the time, referring to their unborn baby, "just as long as she's healthy."  What if she isn't?  Does it decrease her value as a person? 

To this I say a resounding "No!"  In fact, I would argue that it increases her value to society.  There is no way of telling how much money has been spent on Dominic since his birth.  I would guess it is up in the millions.  But Dominic doesn't have a price tag.  The world desperately needs people like Dominic, and my friend in a turtle shell, to show them the real worth of human life.  A successful, intelligent, beautiful person does nothing to convey the innate goodness of life.  We see the external, applaud their accomplishments.  It feels good to be with them.  On the other hand, it is uncomfortable to with people with profound disabilities if you are not used to looking past the exterior to their inner goodness.  A life doesn't have a price tag.  It does not have an arbitrary value where it suddenly becomes worthless.  When we see these severely affected people we must look past the exterior, the deformations, the "uselessness" and see the interior life willed to then by God.  Only then can we know the high purpose and profound responsibility he has given to the smallest among us.

by the way, kids don't have a problem seeing the inner goodness.  That's why they're my favorite "class" of people :)

Friday, August 24, 2012

It's been a while... surgery and other stuff

Did you get the memo that it's almost September?  I know it's been a while since I last posted when I start getting messages on Facebook asking how Dominic is doing.  August was a full month, here's the rundown:

Our sweet little man finally got his foot braces we had been waiting for.  Camo, of course.  When he has these on with his camo hearing aides, I sometimes can't find him.  Worse yet, Mike starts getting his hunting guns out thinking he's got a hunting buddy ready to go.  We'll have to look into some sort of search and rescue dog if we keep up with the camo print.  :)

Another biggie this month was his long-awaited surgery.  You know, the one that got cancelled literally minutes before they wheeled him back last time?  Well, this time we had peace about the procedure, and he went back with a fresh blessing from his favorite padre, Fr. Pio Maria.  The surgery went great and the best case scenario was found when they went in.  They were able to completely bring the gonads down in one surgery, his broncoscopy showed his airway is improving, though not normal yet, his hearing is stable (not progressive, thank God), and as for the lumbar puncture, we're not sure yet.  The fluid was sent off to be tested and we haven't heard anything as of yet.  Maybe in a few weeks.  The neurologist is looking for the disease process by testing for metabolizers, in an attempt to find the cause, and possibly some way to stop/slow the brain shrinking.  On second thought, "shrinking" isn't a very nice word.  Let's use "atrophying," it sounds more medical and a bit more elusive.  There, that's better.  These pictures are the evening before the surgery... Super-Dominic!

After the surgery we weren't admitted like I anticipated, so we were put in the recovery room with all the other post-op kids.  In the first 5 minutes I yelled spoke firmly to the nurse twice (sorry nice nurse but you must admit, you were a bit clueless) and was overly aggressive with the sweetest Audiologist in Texas (again, sorry... I'll blame it on the nerves).  We were there for hours trying to get his pain under control until finally the doc's got the word.  Imagine if you will, in slow motion, the two smartest docs we have, walking in together.  A dream team ;)  They heard we weren't budging (the recovery room was empty sans 1 kidd-o by then) and were asking to be admitted for pain control, so rather than sending the PA in (whom I probably wouldn't have listened to anyway... still have a grudge from when he did Dominic's first g-button change...), the docs themselves came.  They prescribed stronger meds and gave us peace of mind.  Our Pulmonary doc was on call all weekend, so we could reach her 24/7.  We seceded and we were on our way home.

I wanted to comfort him if he needed it, so I slept on the floor in his room the first night (no nurse, just little man and me).  This is a post-op day 2 picture.  I don't know what they did to his hair during surgery, but I'm pretty sure they have a bottle of gel and they style kids hair crazy, just for fun ;).  It was so funny sticking up like that.
 Still out of it
 Starting to wake up a bit
The other great thing that happened is this (look down): he got his standing frame!  I have been worrying about him having weight through his legs for a while now so we got a little baby stander!  The standing frame is so important for lots of reasons: to increase bone density, to promote proper formation of the hip socket and other joints, to regulate his tone issues, to be upright for better brain function, to assist with visual training and orientation, promote social skills by bringing him face to face with his siblings.  Whoa, I gotta stop.  I was lapsing into "PT me" starting to write a letter of medical necessity.  sorry.  Anyways, here are some pictures of baby Dom with Little Mary, our firecracker.

 Me: "Mary, look at the camera,"
Mary: "No, you look at the camera"  Stinker.
 She tries to dance with him.  Unfortunately, he can't refuse.
So, that's that.  August, come and almost gone.  I will try to do better in September, and actually write down the running blogroll in my head.:)
In Jesus and Mary,

Saturday, August 4, 2012

What the Houston Doc really said

I'm sorry to say in my last post I gave you the bubble gum version of the neurology appointment in Houston.  I was still raw and since this can be viewed by the whole world, and not just my safe little e-mail list I once had in the beginning, I needed some time.  Things are getting back to normal now and I'm starting to get a scab over the new wound we received there.  I'm ready to share.

The appointment itself was just as I said in my last post.  Dr. Fernandez took the MRI scans, the medical records, and the history he obtained during the visit and said he would study everything well in a couple of days when he had time.  The scans were read by the neuro-radiologist he hand picks (he said he'd come back as many times as it takes to get the specific one he likes to use).  When he called a couple of days later he told me they were able to re-read the scans, independent from the reading previously done by the radiologist's here in Fort Worth, and had come up with at least a little something.  They agreed with the Cook's folks, his brain is shrinking, in both grey and white matter.  The condition is classified as severe and is progressive.  Of course I didn't think to ask where "severe" landed on the scale of bad-ness.  I'm assuming there is maybe another level of bad above severe??  Profound maybe?  Surely.

They think the condition is metabolic in nature but won't know for sure until his gene tests come back in 3-5 months.  He made it clear that metabolic diseases were almost unknown and only a very few could be helped by supplements or diet and medicine.  He said kids with metabolic disease with this severity can live a long time.  He has one patient who's 20.  Sorry doc, but 20 isn't very long, and the fact that ONE patient is 20 doesn't make me feel real great.

He also said with how he looks now (both physical exam and MRI scans) he would not expect Dominic to develop much, if any, in language or cognition.  This I expected, from the beginning really, as soon as we found out his problems were genetic.  But as almost every mom with a special kids has told me, the doctors are usually wrong when it comes to prognosis for development.

I guess the reason this hit me so hard is this is the first doctor, ever, to give any sort of prognosis or classify the finding like he did.  I appreciate the honesty, I really do, but man it sucks.  It's that whole "brain shrinking", "grey AND white matter", "severe" thing that gets me.  I knew it was happening, I can read the MRI reports just like anyone else, but I'm not a neurologist, I can't say what it all means in the grand scheme of things.

This past week we have cancelled all our therapies and took time just to be.  We've struggled and come out on the other side, though not the same.  Just tonight during my rosary I felt the mystery of the annunciation profoundly.  Mary said yes, without caveats.  She loved her son and watched him suffer and eventually die.  BUT, she did not question, she just said yes, according to His will.  Over and over.  It is my deep yearning that I can imitate her in this way by just saying "yes" regardless of what comes our way. 

We don't know how long we will have him, and now we know it may be less time than we expected, but we're just loving him in a way that makes him believe he is the most important person in this world.  Because to us, he is.

 Dominic sporting his new orthotics
The only problem is whe he has these and the camo hearing aides on we keep loosing him ;)