Hello IR, my old friend

It’s a scene that has become all too familiar, yet somehow has not become any easier. I checked in at the covid screening tent, then made my way to registration (where they know me by name). After that, I waited in the medical imaging lobby (where the receptionist said “you’re back again?”). Then I was escorted here: to preop.

Soon I’ll change into the same ugly gown, wear the same grippy socks. The pre-op nurse (who greeted me by saying “we don’t mind having you as a patient, but we keep hoping you won’t have to come back...”) will access my port (needle #1 for the day). I’ll wait a few hours to meet with the doctor. I’ll consent to another invasive procedure, sign my name on the same dotted line. Yes, I acknowledge the risks. Yes, to all of it.

After that, I’ll be given a light sedative (not nearly enough if you want my honest opinion). The doctor will inject local anesthetic into my neck, needles 2,3, and likely 4. I’ll probably lose count. Then, I’ll have a series of CT scans. I’ll move in and out of the scanner again, while he studies the “suspicious” sites. Then, carefully, he’ll concoct a mixture of my own blood and fibrin glue, and inject into each of these areas. Directly into the nerve root. More needles, lots of them, but hopefully by the end of the day I won’t know or remember how many. Quite literally, we are attempting to glue humpty dumpty back together again. One section of the spine at a time.

And speaking of hope, somehow, yes, I’ve dared to dig down deep and find some. Let’s be honest, if I didn’t, I wouldn’t be here. I wouldn’t do this- again, for the 5th(?) time since November. Honestly, I’ve lost count. The recovery sucks. That’s all there is to it. 3ish days of strict flat bed rest. A long while of helplessness and relying on others - my personality weakness. And maybe that’s part of what God is teaching me in this season, the part of my heart that he’s maturing and growing, regardless of the fact I never asked to be grown in this way.

Deep down, a part of me has to hope that this will do the trick. That somehow, someway, this will be the day I’m healed. The beginning of returning to ME. The me who is happy, healthy, and enjoys eating donuts more than she should (I miss you, food). The last headache-free day that I can remember was July 15th of 2019 - and I really, really don’t want to make it to the one year mark.

I’ve found that somehow, hope and despair, optimism and realism are so infinitely intertwined that they’ve become hard to separate. And that’s okay. I’m both relieved and terrified to be here today. I’m both hopeful and leary. Somehow filled with both faith and anxiety.  To some, this may sound so contradictory that it doesn’t make sense. And frankly, I can hardly make sense of it myself. Other than to say that it’s necessary. I have to have enough hope in this to be willing to endure the recovery. At the same time, I can’t get my hopes up high knowing they could be crushed if this doesn’t work. 

So what do I do in the meantime? I’m not sure, other than literally one step at a time. One deep breath. Put on the gown. Sign the form. And just do it.

This morning, I’m praising God that after a million delays, I’m finally here today. Praising Him for a negative covid test. Thanking Him that through my pain, He’s already proven to use me to help other people, somehow mysteriously guiding them towards their own hope and faith even on days I can’t find any of my own to spare.

This morning, I’m praying for a smooth procedure and a recovery without complications. And perhaps most boldly, praying that this is the last time - pleading and believing for a miraculous healing.

& if not, He is still good. Yes & amen.

A Plea to Society - From "The Vulnerable"

I have to be honest.

For the first few weeks of the Coronavirus (COVID-19), I thought it was being blown out of proportion. I thought people were unjustifiably scared.

I am happy now to admit I was wrong.

They say that only the elderly and those with underlying health issues are at risk. Only “the vulnerable”, if you will. I think it’s supposed to be reassuring. But what if you ARE “the vulnerable”? Then what? I challenge you to look and think outside of the box. I promise you, you know more “vulnerable” people than you think you do. And it’s high time you act as if you care enough to want to protect them.

I continue to see many taking the social distancing precautions lightly, blatantly ignoring pleas from our government and our healthcare system. I see you refusing to give up your nights out with friends and your favorite weekend bar visits, your house parties. I see you. And I sympathize with you. But quite frankly, I’m fed up.

I get it, you don’t want to give up your life and all semblance of normal. You are scrambling to make sense of what life looks like right now, and you’re desperately searching for a sign that this will be over soon. The reason I know this? I’ve done this before. We all have. The “vulnerable”, I mean. We’ve cancelled social plans at the last minute more times than we could ever count. We’ve stopped eating our favorite foods because they make us sick. We’ve missed birthday parties, bridal showers, and nights out because we were too sick to make it there. Some of us have even stopped getting invited to such events because people just assume we won’t feel up to coming. We’ve missed work because of procedures and appointments. We’ve had huge financial strain because of loss of wages and insane medical bills. We’ve been there for so long, which means we really do know how hard this is for you right now.I see you, but I want you to see me too. I bet you hear “the vulnerable” and it sounds like a nameless, faceless, abstract group of people. But we are none of these. We are real people, with real stories worth telling, and real lives worth living. And these are our stories.

So picture this: in addition to giving up daily activities, social relationships, and fun outings, I’m also at risk of having to give up access to the medical care that keeps me functional; the medical care I’ve fought for years to have access to.
I am thanking my lucky stars that so far, my infusion appointments have not been cancelled. I can’t say the same for many of my friends around the country.

I have an upcoming IR procedure that I need to continue to seal my CSF leak. Every time the phone rings, I worry it’s them calling to cancel indefinitely. It seems almost inevitable at this point. My records sit on the desk of a world renowned surgeon in California who, for the time being, is not performing surgeries nor reviewing new cases. To perform even the most basic of necessary care for my central line safely, I need gloves, masks,alcohol wipes and other medical supplies that are now completely unavailable in many parts of our country. My life is on hold, my health is on hold, and my suffering drags on - with no known end in sight.

Let me be clear about one thing. I am in no way meaning to make myself a martyr. I am “lucky” in that my health will not become life threatening if I go without these procedures. But my friends? I can’t say the same. 78% of the sample I polled said they have ALREADY seen changes in their access to care. Of the rest - 95% said they anticipate changes in the very near future.

So far, they’ve been denied access to getting dressing changes for their central lines (needed to prevent sepsis). They’ve had their TPN deliveries suspended, meaning their bodies aren’t even getting basic nutrition or calories. Their infusion centers have completely shut their doors. Some home health companies are refusing to send supplies and nurses to their patients. Their primary care doctors and specialists are refusing to see them until AUGUST at the earliest. Other appointments that they’ve been waiting for since 2018 have been cancelled with no rescheduling in sight. This puts them at risk of losing their daily home medications, too. We are the vulnerable. And we matter. 

I hope I still have your attention by this point. I don’t need your pity or your apologies. I just need you to think of me and my friends every time you have a thought that social distancing is being over hyped, or that it isn’t worth it. It may not be worth it for you, the healthy millennial, but I sure as hell hope it’s worth it to protect ME and so many others. 

Trust me, I want this to be over as much as you do. That’s why I’m begging you. Listen now. Distance now. STAY HOME!!!!!!
Make the sacrifices NOW so that this can be over quickly. 

Because I promise you, if we don’t get ahead of it, it will get ahead of us. And I think we can both agree that we don’t want to see what that would look like.

Child Life Month: Pediatric Pearls

As a child life specialist, I’m often asked by parents in my community and social circles how they can appropriately support their children through medical procedures. In the hospital setting, I’m frequently asked to partner with and educate physicians, mid-level practitioners, and nurses on evidence-based ways to care for children in the acute emergency environment. This post is intended to be a WIDE overview of the information I’ve learned, practiced, and mastered during my (nearly 6) years in Child Life. Full diclosure, although I have trained and worked in many areas, I have worked in pediatric emergency medicine for 4 full years now, and most of my tips and tricks tend to be tailored to that population. I have more detailed posts coming on many of these topics and can’t wait to share them with you!

1. Involve the parents in their child’s care. This comforts the parent by giving them an active role in helping their child feel better, and it comforts the child to have their parent closely involved during invasive procedures. Most procedures can be performed while a child is being held and comforted by their parents: this includes routine examinations, testing including swabs, lab draws, and IV placement; and more invasive procedures like abscess drainage and laceration repairs. There aren’t any procedures or instances I have at the top of my head that would indicate a necessity for the child to be placed flat on the bed without being held or comforted by a parent. Some procedures do require a reclined or recumbent position, but the parent can still lie next to the patient, or rest the patient’s head in their lap. If procedural sedation is needed, consider allowing the patient to remain in a position of comfort during the induction phase of sedation and transfer them to a supine position immediately after. In research studies, children who are held upright rather than supine have less distress during the pre-procedural period, during the actual procedure, AND they return to baseline more quickly following the procedure. “ many, many children scream in panic and struggle fiercely as soon as they are placed in a supine position” (ie, before any medical procedure has even started). Similarly, “children who are calm react with less intensity to negative stimulation than do children who are already upset for other reasons (Korner & Thoman 1972). Consequently, procedures require less time and fewer staff. The positions of comfort also lessen the chance that the procedure will fail”.

2. There are VERY few situations where I would discourage parental presence at the bedside altogether. It is commonly misconceived that parents should not be allowed in the room during critical procedures such as rapid responses or code blue/resuscitation, but the research shows us parental inclusion is important during these times of crisis as well. “Studies show that the presence of parents does not have a negative impact on the performance of medical staff and that being with their child also results in less anxiety in the parents (Bauchner et al. 1991; Bauchner et al. 1996). “

3. GET DOWN ON THEIR LEVEL! I cannot stress enough how important it is with a pediatric population, to squat or sit down to meet kids at their level. Imagine laying scared in a hospital bed with many large adults looming over you, looking down at you with unfamiliar equipment in their hands. Talk about scary!

4. Children should always be offered choices, but only when the choices are realistic. Instead of asking a patient “can I put this on your finger?” try saying “I need to put this on your finger. Which one would you like me to use?”. Similarly, if taking medicine is not a choice, avoid asking questions like “are you ready to take your medicine” or “do you want to take some medicine"? Consider what your options would be when the child simply replies “no”. My favorite question instead? “ It is important for you to take this medicine to help you feel better. Do you want juice or a Popsicle when you’re done drinking it?”

5. Children are far more comfortable with medical equipment if they’re given a chance to familiarize themselves with it first. Child Life Specialists are often available to provide in depth exploration and play with medical supplies including tools and equipment needed for use during IV starts, sutures, surgery, and more! (post coming on this soon!) Even without a child life specialist and the detailed resources and prep kits we have available, clinicians can provide their own basic preparation and familiarization. Simply showing a child a stethoscope and allowing them to touch it can ease their anxiety. Similarly, allowing a child to see and touch an IV catheter can clear up many misconceptions and fears of needles. Demonstrating procedures, even as simple as a physical exam, on a stuffed animal or even the child’s parent can encourage compliance in the toughest of patients.

6. Language use: much of the language we use in the hospital is not accessible to our adult patients and caregivers, and is especially confusing to children. Avoid use of terms that may have double meanings or alternate definitions in the mind of a child. This includes “cat scan”, “stool sample” “IV”, and “dye”.

7. Pain control: a topic I’m incredibly passionate about. Simply put, “They’re going to cry anyway” or “they’re too young to remember this” is NEVER a good excuse to deny a patient appropriate pain control. This topic will most definitely have it’s own detailed post coming soon so stay tuned for that!) In the meantime, a few fun facts: did you know that…..

   1. “A child’s experience during painful medical procedures likely plays a significant role in shaping that individual’s pain response to future events” (Young, MD, 2005)”?

   2. Infants, even as young as neonates, “who undergo procedures with inadequate analgesia have long-standing alterations in their response to and perceptions of painful experiences”? (Zempsky et al. 2004

   3. “Our youngest patients are at the highest risk of receiving inadequate analgesia” (Zempsky et al. 2004)

That’s all for today folks! Stay tuned for more information on communicating with pediatric patients, managing acute pediatric pain in the emergency department, positioning patients for procedures, and more! Hope this information is helpful and that you can use it in your practice, or even in your home!

Oh and one more thing - Happy Child Life month to all those heroic ladies and gents around the country fighting the good fight every single day. You are appreciated. You are valued. YOU ARE IMPORTANT!

Way Maker ; Miracle Worker; Promise Keeper

Y’all, anytime I start to doubt gods faithfulness and goodness, I want you to point me to this moment. January 26, 2020. In my favorite place on earth (hillsong phoenix) worshipping alongside Jenna and literally weeping hand in hand as Lisa Harper spoke truth and revival into our lives. To the outside world, it probably looked like two friends with broken and weary hearts coming together to worship - or maybe it even looked so ordinary that it didn’t look like anything at all.

To me, it looked like something else entirely. 

You see, leading up to my port placement last year I prayed a lot of prayers. I prayed for miraculous healing, for something radical to happen so that I didn’t have to get the port. I didn’t want it. I didn’t want to be sick anymore. And I didn’t know what else to do, so I prayed. And in desperation I prayed, lord, if this is your will, please just bring me peace about it. 

And I know now that this is exactly the miracle I had been praying for during those weeks. If you had told me almost a year ago that the randomly assigned IR nurse who I interacted with for no less than 1 hour would later be one of my best friends and personal hype squad, I never would have believed you. I couldn’t have predicted we’d be growing in faith together. But here we are, doing the damn thing. 

God didn’t mean for any of us to do it alone. He didn’t mean for us to struggle in silence or to filter our lives and only give the best versions of ourselves. 

We all say “god gives his toughest battles to his strongest soldiers” and honestly I’ve always taken issue with the phrase. Because I’m NOT that girl. I’m not strong. I’m not even a soldier! 

Then last night as we learned about Job and how he was stripped to nothing, publicly acknowledged his grief, and then WORSHIPPED- I realized it. Maybe god doesn’t give his toughest battles to his strongest soldiers. Maybe he gives them to those who will survive them (messily, raw, and real) and STILL continue to point to Him. 

So yes, looking back, on the day of port placement, I felt that God hadn’t listened. He hadn’t answered my bold prayers. I wasn’t healed. My physical health was a mess. And I didn’t even feel that the Hail Mary prayer was answer: I didn’t feel any peace at all over my decision. And even though it hurt, I continued to praise Him. I praised Him for the things I could see but also for the things I never would.

But in the palpable, faith filled room last night, I just knew it. This is the miracle. This is the answer to all those prayers that I thought had gone unnoticed.

This freeze frame moment in a 93 year old historic church - if it’s not an example of Gods redemptive grace, I don’t know what  is. If I could bottle up the feeling and revisit it as needed, I would. So I’m writing it here, for myself, to cement it in my memory. Hopefully forever. 

“Even when I can’t see it you’re working. Even when I don’t feel it you’re working. You are way maker, miracle worker, promise keeper, light in the darkness”