I Quit: Raising a Child with Complex Health Needs

I Quit: Life with a Complex Child

I can’t tell you how many times, as the mother of a child with complex health needs, I have uttered those words to myself.

I quit.

I’m finished.

I’m done.

Not done with Apollo and not done with his complex health issues, but done with the twisted, often inefficient bureaucracy of health care.

I Quit: Raising a Child with Complex Medical Issues

This face could be the poster child for messed up medical care, medial record errors, missed diagnoses and unneeded suffering.

Yesterday I fielded a handful of calls from Seattle Children’s hospital. The first one was to cancel Apollo’s appointment with his GI doctor. I made this appointment (weeks ago) so the doc could look at the scar tissue around Apollo’s stoma. It is thick and causes his g-tube to hang out of his stomach at an angle. The friction then causes irritation and sometimes bleeding. The receptionist told me they were canceling his appointment because he needed to see a general surgeon instead…

So I called and made an appointment with the general surgeon for Friday morning…and then called the GI nurse (the same nurse who we have been working with since his g-tube was placed). I wanted to know why he no longer needed to see Dr. F (and who exactly was deciding if he needed surgery or not). The nurse informed me that Dr. F just takes care of GI issues, and this wasn’t a GI issue…which begs the question of who then is in charge of the Apollo’s  g-tube? Since Apollo’s appointment with his GI doc is now cancelled, I told his nurse what happened on Friday when the resident removed the water from his tube and it fell out- necessitating a trip the to Children’s ER. She informed me that removing that small amount of water could not possibly have made it fall out…and I insisted that it had. I  told her that in over two years of having the tube it had never just randomly fallen out.

And there our conversation ended in a stalemate. All I want if for them to admit a mistake was made (removing the water and causing the tube to fall out) and an apology. An apology for making Apollo suffer more pain and more trauma. You what else would be nice? Letting the resident know, so he doesn’t make that mistake again.

But it won’t.

And that’s why I want to quit. Quit dealing with half a dozen doctors that never talk to each other. Quit dealing with medical bureaucracy. Quit dealing with medical professionals that don’t listen to me. That don’t think I can be knowledgeable and informed. Quit having my son suffer more than he needs to.

But I can’t. I can’t because my son wouldn’t be alive today without advanced medical care. I have a son with complex health needs that are not going to go away. And I fear that the ridiculousness that is our current state of medical care isn’t going away either. I don’t have the answers. I am just a mom with a complex child. But something needs to be done. Something needs to change.

Double Aortic Arch Division {One Year Later}

One year ago today Chuck and I handed our 20 month old son over to the surgeon we had just met the day before. Apollo was having his first double aortic arch division. We had no idea what to expect. We paced the waiting room of Seattle Children’s Hospital, knowing Apollo and our entire family were covered in prayer.

vascular ring, double aortic arch, failure to thriveApollo had struggled with his health since he was three months old and began to shrink before our eyes…he was diagnosed with reflux, a milk allergy and failure to thrive. He had his adenoids out and a bronchoscopy and we still had no answers. He was finally diagnosed with a double aortic arch through an MRI on January 18, 2012.

As Apollo lay in the hospital one year ago, we never dreamed a feeding tube or second double aortic arch division were in his future. We thought this surgery was the beginning of good health for him.

One year later, I can say his stridor is gone. He still has major sleep anxiety stemming from this surgery. He still gets short of breath from running and playing, he takes in 50% of his calories by g-tube and has just begun feeding therapy.

It’s been a long, hard road. One we all continue to walk.

For a detailed summary you can read: Apollo’s Story.

{And in a fun bit of synchronicity (that’s a fun word!) Apollo is featured over on the website for Parents Magazine raising awareness for congenital heart defects! Why don’t you pop over and leave him a sweet comment?}

Krispie Kreme

After our rendezvous at California Pizza Kitchen last week, I had the brilliant idea to take the kids to Krispie Kreme doughnuts where they could watch the doughnuts being fried and glazed on their nifty assembly line. Most of the kids had never been there before. Okay, truth be told, most had never even heard Krispie Kreme doughnuts. But I digress.

Unfortunately, when we arrived they weren’t actually making doughnuts, so it was a bit of a flop. Okay, maybe not since Chuck bought two dozen glazed doughnuts. But *I* wanted the kids to see the doughnuts being made.

We let Apollo pick his doughnut out of the display (such is life with a tubie).012713_9479 blog

He studied it for a moment…012713_9480 blog

…then dug in.

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And after several valiant attempts, this is how much he ate.

For real.

Throughout the day he kept attempting it until he finally had licked most of the frosting off.

I don’t really understand why Apollo eats so little, other than the vague “psychological issues” we were told to expect. What does that really mean? I don’t know. Now that the compression on his esophagus is gone, he eats carrot sticks, celery, red peppers and apple slices with abandon. All foods that were too dangerous for him to eat before. He also eats: chips, M&M’s, egg whites, popsicles, Chicken McNuggets and fries, olives (green and black)…so why not a doughnut? Or a sandwich? Or a hundred other foods? I have no idea. He now gets 500 mls of formula from his tube a day, down from 760 mls before the surgery in Houston. I just wish I had some kind of a  roadmap for “teaching” him to eat. I think he’d really benefit from “group therapy” with other (non-sibling) kids who all meet once a week or so too eat together. Unfortunately, there is nothing like that around here.

012713_9486 blog 012713_9487 blog

The other kids all dug in with gusto reserved only for rare treats like sugar-filled doughnuts.012713_9488 blog

Jubilee, age 10012713_9490 blog

Hezekiah, age 8012713_9489 blogTucker, age 7

A fun finish to a fabulous food-filled day.

 

The Value of Newborn Photography

I know what you’re thinking. You’re a newborn photographer, of course you are going to say newborn photography is “important”. While that’s true, I want to tell you, as a mom, why newborn photography is so very important to me.newborn, chd, heart baby

My last baby, Apollo, was born by emergency c-section. He had a bit a rough start and needed to be observed in the nursery for while he as worked on his breathing skills. Within hours he was resting peacefully in my arms, having been declared “perfect” by the doctors. A photographer friend came to visit when Apollo was six days old and helped me capture these beautiful newborn images. I will be forever grateful to Emily for that.

newborn photography, chd, heart baby

At age 18 months Apollo was diagnosed with a double aortic arch, a type of congenital heart defect. His heart defect required two heart surgeries and the placement of a g-tube. While I valued these photos before, I  absolutely treasure them now.

double aortic arch, chd, heart baby, vascular ring
March 7, 2012

Never again  will I see my son’s precious scar-free back.

chd, PEG tube,  g-tube, feeding tube
Summer 2012

Never again will we see his unmarred little tummy.

double aortic arch, chest tube, chylothorax, double aortic arch
November 2012
g-tube, mic-key, chd, heart baby, double aortic arch
January 2013

I’m not ashamed of my son’s scars. They are symbols of his struggles, his suffering, his  resilient spirit.

chd, g-tube, mic-key, double aortic arch

Each scar tells a story about Apollo’s life.

chd, double aortic arch, heart baby

A story I hope he will someday be proud to tell.

chd, double aortic arch, heart baby, g-tube

My son is a fighter. I love his body, scars and all.

When Apollo was born we had no idea what struggles he had ahead of him. That’s why newborn photography is so important to me. I am so grateful to have captured sweet newborn body. Just as I proudly capture his now scarred, but repaired, body at two years old.