Raphael the Girl Tiger: L’s Healing Helper

When we were plunged into our health journey, we had never heard of gastroschisis or short bowel syndrome or TPN or a Broviac or a Mic-Key button or any number of other things. Our world suddenly became very narrow, and very deep. Among those things we had never heard of, however, were a number of organizations and resources available to help families who find themselves in our shoes, which I’ve recently gathered on a shiny new resources page linked in the black bar at the top of each page on this site.

One of these is Avery’s Angels, a foundation dedicated to gastroschisis research, awareness and family support. One of the many amazing things they do is a “Warrior’s Christmas” program, through which they provide Healing Helpers to kids who face ongoing medical challenges due to gastroschisis. And this year, L was chosen as one of their Warriors.

Meet Raphael the Girl Tiger:

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(Cousin C, I think we may be inadvertently channeling Hank the Girl Cat.)

With all the boxes of medical supplies that show up on our doorstep (see those boxes of Pediasure stacked over there?), you’d think L’s enthusiasm for opening packages would have been tempered by this point. But he is continually elated to open each box to find out what’s inside, and this time the contents did not disappoint.

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Raphael the Girl Tiger has had intestinal surgery that left a scar just like L’s, and she also has a g-button and scars where her line and her ostomy used to be.

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Here, L is performing primary closure:

L has never been attached to any one lovey or blanket, but Raphael the Girl Tiger has quickly become a bedtime staple. And, in true short gut fashion, she’s already proven admirably resilient when it comes to being puked on (I’ll spare you the photos on that one).

L, Z and I send our love and thanks to Meghan and the entire team at Avery’s Angels for Raphael, and for the important work they do each day to help families going through medical hell or unimaginable loss.  

If you know of any organizations, blogs, or helpful tips that should be included on my resources page, please let me know!

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Tales of a Line-Free Kid: The Pinch

Being line-free has more advantages than I can quickly catalog here, but it also has one definitive drawback: needles.

Malabsorption necessitates frequent blood draws to monitor vitamin levels, hydration, liver enzymes and a plethora of other things. Depending on what else is going on with his health, L has had monthly, biweekly, weekly or occasionally even daily labs since he was born. However, with the exception of a brief stretch in the summer of 2014, L has also had a line of some sort his entire life. That means that we have had the good fortune (can we really call it that?) to have been able to draw his labs through his line, needle- and pain-free. Because we were, erm, between doctors for several of those line-free weeks in 2014, he has had a grand total of one traditional blood draw in his entire life, at around 15 months old when he was too young to remember.

Until today.

I was nervous, heading into our appointment today. I have friends with kids – small children, far too young to be so brave – who are so accustomed to needles that they chatter and giggle through labs. There are others, though, many others, who have been so traumatized by extensive poking and prodding that they require sedation for even the simplest blood draw. L does well when we explain to him well ahead of time what’s coming, and for a 3.5-year-old he is very receptive to being reasoned with, so I hoped I could employ some of the tactics we have long used to talk him through dressing changes; but, thanks to regular dressing changes, he also panics when we so much as pull tape off his skin. I felt as though an awful lot of weight was riding on how I managed this first needle.

In the empty waiting room, we made a game of squeezing together into each of the extra wide chairs. As the panicked screams of another poor little soul rose ever-louder from the back, I amplified my laughter in a futile attempt to mask what awaited him.

Finally, it was our turn. “I’m scared,” he whispered.

“I know, buddy. But remember what we talked about? I’ll be with you the whole time, and it’ll just be a little pinch and then it will be all done.”

The phlebotomist led us to the back, and L climbed up into her giant chair unprompted. He was immediately taken with the perpetual motion toys on her desk (Dory! A pterodactyl!), and perked right up when I offered the holy grail of distraction: YouTube toy review videos (curse you, Ryan’s mom, but in times like these I am grateful for every shrill unboxing. And by times like these I mean blood draws, 5 am, and when I just want to pee in peace for once, dammit).

As she pulled out the needle, I was irrationally taken aback that there was no warm up, no sleight of hand. All of a sudden, there was a big shiny needle just staring at us. “All right, here we go,” she said. “Just a little pinch.”

I braced myself to hold him down, as I’ve had to do far too many times before, but he gave only the slightest whimper when the needle went in, and another small whimper when it came out. He watched like a hawk as she wrapped his arm in coban – red, because she had heard him say red was his favorite color as we watched the blood flow into the syringe.

He turned to me, and I held my breath, waiting for his words.

“Mama.”

His little voice was very stern.

“That pinch made a HOLE.”

“Yes, buddy, it did. I suppose I should have said it would be a poke instead of a pinch. But it wasn’t as bad as you thought it would be, was it?”

“Yes, it was! It was exactly as bad as I thought it would be –”

My mind raced to come up with exactly the right words to steer him back in the right direction. But there was no need:

“Can I have more stickers?!”

America, we need to talk.

This is not a political blog. I have no intention of making this a platform for a partisan agenda. This is a place to share and reflect on our health journey, and I want it to remain a safe place for people and families who are struggling, regardless of your politics.

But there are some things we need to talk about.

There are some very, very scary things brewing in the world of healthcare legislation. And unless you are independently and exorbitantly wealthy, they will affect YOU, no matter what kind of insurance you have.

I don’t pretend to have a perfect answer, and I’m not here to argue the finer points of any politician or party’s proposed (or as-yet-still-not-proposed) plans. What I can do is talk about our experience navigating the current healthcare system, and how some of the current protections and impending changes affect and/or could potentially affect my family – real people who, if you’re reading this, you may very well actually know, and whom you might even like a little bit.

Let’s start with a couple of basics:

  • We currently have protection against lifetime limits on benefits.

In 2009, the year before the ACA banned lifetime dollar limits on healthcare coverage, around 59% of American workers had insurance plans with lifetime maximum benefits, many with limits of $2 million or less. That may sound like a lot of money, but 131 days in the NICU is really, really, insanely expensive. My son’s bills had surpassed $3 million before he ever came home from the hospital.

Since then, he’s had 8 additional surgeries, daily intravenous nutrition for most of three years, daily home nursing visits (at least as billed – but that’s a long, ranty story for another day), and so many readmissions I’ve lost count. That’s not a cliché; I’ve actually lost count. Last month we got a bill for $55K for part of his last big surgery. That one had been improperly processed as a denial and was quickly taken care of, but if our (employer-based, not ACA) insurance were allowed to deny us coverage after we hit a specified lifetime limit, we would currently be in financial ruin and unable to afford L’s care, let alone anything that might arise in the future.

  • We currently have protection against being denied coverage due to pre-existing conditions.

img_6138L is a walking pre-existing condition. His condition existed before he ever even emerged into this world. Insurance companies used to be allowed to deny people like L coverage simply because he got the shit end of the randomly-occurring congenital lottery (through no fault of mine and certainly through no fault of his own); if that were still the case, my husband would be unable to change jobs, we would be royally screwed if he got laid off or if his employer decided to change insurers, and once L is old enough to age out of our insurance coverage, he would be financially ruined before he was even given a chance to try his hand at this whole adulting thing – especially if he is no longer allowed to stay on our insurance until age 26, which is another ACA protection that’s currently in jeopardy.

  • This could happen to you.

This could very well be a letter to myself a few years ago. Before L, I had very little real understanding of what lifetime limits or denial of coverage based on pre-existing conditions could actually mean in practice. For anyone reading this who may be unfamiliar with our story, I was a healthy, active, 28-year-old expectant mother doing all the right things and experiencing a textbook pregnancy – until my son arrived very suddenly at 34 weeks with an undetected, randomly-occurring congenital defect that ultimately cost him most of his small intestine. He spent more than four months in the NICU before coming home, and while he is currently a happy, smart, well-adjusted preschooler with a bright future, he has needed significant medical and nutritional support his entire life, including a feeding tube and a central line, to ensure that future remains possible for him.

If you think you’re safe because your insurance is employer-based, pay attention to these two regulations. They offer protection against crushing blows to real people. None of the statements I’ve just made is a revelation, or at least they shouldn’t be, but it’s very possible you may not have considered the real-life consequences of these things for people you actually know. For people you love. For you.

Monday Moments

In theory this is the first in a series of posts about meaningful moments that I would like to think would happen weekly, but that in reality will probably show up on scattered days here and there, because, you know, life and stuff.

Since things were getting pretty touchy-feely around here as 2016 drew to a close, I’ll kick things off with a story about a time when I was kind of a jerk.

A few days after L’s big surgery in October, L woke up with significant pain. He had lost his epidural the night before and very clearly needed some extra pain management, and I was in mama bear mode while trying to calm him since thrashing doesn’t feel particularly good on a fresh abdominal incision.

Right about that time our nurse for the day walked in to introduce herself. She was most likely assessing the situation and getting a quick update from Z, but in the heat of my mama-bear moment it felt like they were both standing there for ages and ages watching my child in pain without doing anything at all to help.

“Can you get him some morphine instead of just standing there?!”

Sometimes I’m an asshole.

Now, it would have been a normal human response for her to get defensive or chalk me up as a pain in the butt. I wouldn’t have blamed her if she’d done so – simply checking off her required duties and stopping there, or avoiding engaging with me since I was not her patient and I was clearly kind of difficult.

Instead, she recognized that my sharp words were not directed at her, but instead stemmed from the stress of the situation. In spite of me having introduced myself as kind of a jerk in that moment, she gave me the benefit of the doubt and went out of her way to provide fantastic care for our whole family, not just L. When we were stuck waiting in radiology between rounds of imaging, she came down to us with a dose of antibiotics and stayed for the 15 minutes it took to run through his line, talking to us about our journey with L’s health and our experiences with different providers. She took that time to get to know us and what we needed from our caregivers, and she really listened and responded to our needs. She respected us as experienced members of L’s care team and made sure we were included in decision-making when it came time to determine whether or not L should remain NPO (nothing to eat or drink) another day. And when it came time to change the dressing on his central line, which we do at home once a week, she let me do it myself according to the procedures we use at home, which are sterile but more child-friendly and familiar than some of the standard hospital protocols, and so ultimately safer and more comfortable for L – and was a better support for me through that still-stressful process than any other nurse who has ever assisted me with a dressing change (I’m looking at you, nurse who criticized or questioned every move I made even though you hadn’t done a dressing change yourself in months).

On the day we were discharged, she was serving as charge nurse. She helped move things along to make sure we were discharged on schedule, and we arrived at home mid-afternoon with plenty of time to get settled back in and set up the evening’s TPN. Only, the TPN hadn’t been delivered to our house, and when we called to check on it our home pharmacy said they had not received the orders. After several phone calls with GI and the pharmacist, I called back up to the surgery floor we had just been discharged from – and she answered. It was right at shift change and I caught her just as she was about to walk out the door, but even though it was not her error (it turned out to be an error on the side of the home pharmacy), instead of passing us off to someone else she took charge of the situation, stayed late to make sure new orders were sent, called the pharmacist herself to make sure she had received the new orders and called us back to make sure our delivery was on its way, because she wanted to make sure L had what he needed to continue his recovery.

This is not a story about listening or staying late. What impresses upon me the most is that she did all this after I snapped at her, without missing a beat. This is really a story of selflessness; of being able to recognize when others are in pain and to swallow your pride and put them first. It’s what we would hope of any caregiver, but in practice, as humans, I think it’s much harder to live out. And it seems to me that the ability to truly put the patient (and even his asshole family members) first is what caregiving is really all about.