Preparing for and Enduring Surgeries and Procedures for Medical Needs Children

 



---

*Note: I have no training in trauma. I simply have a few notches in my medical momma belt, and gently offer here what I’ve learned.

Many of us adoptive parents said yes to the adoption of almond eyed, precious ones with needs, and by doing so, stepped outside the familiar territory of parenting healthy little people. We did so willingly, though we had no idea what that would look like, or how it might feel.

What breaks our hearts the most is watching our kids endure the poking and testing and NG tubes and chemo infusions and enemas and casting and surgeries and invasive tests and blood transfusions and echocardiograms and sleep studies and catheterizing. And how could we have known how those blasted IV sticks would make us crumble?
 
But it is all needed. So we do it.

Our family is with you, as our small people have experienced hospital stays, surgeries and a whole host of corrective and life-saving medical procedures. This is our offering on how we prepare and endure.

---

Parents


The most essential advice is, for us the emotional mom and dad, to stay calm. It’s going to take some time on our knees, because for every procedure, we need peace and trust like a protective blanket. We’ve simply gotta grieve another time. It’s our most important gift to them. They sense our tension and respond.

 

Take turns being the comforting parent. There are often many people in a hospital room during hard moments. We try not to add to it by adding noise and distraction attempts. One parent voice at a time.

 

Don’t make assumptions about what kids understand. Do they understand that medical professionals are helpers that have to do uncomfortable things to make us better? Do they understand that their casts/bandages will eventually come off or that bleeding will stop?

 

Surrender your efforts to make it all better. Let God be the God of your child.
 

---

Leading Up to a Procedure or Hospitalization

We are open with our kids. On a level they can understand, we tell them what to expect. We do this in pieces, step by step, when needed. If anesthesia or sedation will happen, we might say, “The nurses will give you some medicine to make you snooze while they help your body. You won’t feel anything. When you wake up, it will be all over.”

---

---

We purchase sticker books, such as Usborne’s Dress the Teddy Bears: Going to the Hospital Sticker Book and Going to the Hospital Sticker Book. We read books, such as Franklin Goes to the Hospital, The Berenstain Bears Hospital Friends and The Surgery Book for Kids.
Sticker and reading time helps us explain what nurses and doctors do, why they wear masks and use stethoscopes, what a hospital rooms look like, and what an IV machine does. We read these before, during, and after hospital stays.

---

---

Dolls and toys expose kids to medical equipment in a fun, hands-on way, such as dolls in wheelchairs and Doc McStuffins doctor’s kits.

The International Children’s Ostomy Educational Foundation even offers ostomy dolls free of charge. We use these for conversational play.

---

---

Before a hospital stay, we let our kids shop for something fun for the hospital, such as crazy socks, a water bottle, slip on shoes that they can wear (once mobile) when walking the halls of the hospital, hair accessories or nail polish.
 

---

---

Promises

On the way to the hospital, we make some promises to look forward to. Then, in the hard moments, we can remind them of plans we made.

“You’ll get to see the big aquarium in the lobby.”
 

“There is a library and play room in this hospital. Should we check those out while you are here?”
 

“If you ever need it, let’s calm ourselves by doing our family hand shake. Or I can hold your hand and we can do big cheek breathes. I could rub your back too.”
 

“Mommy and daddy will buy you a balloon from the gift shop while you are with the doctors and nurses. You’ll see the balloon as soon as you see us. We’ll pick out a balloon for you from the gift shop. What kind should we look for?”
 

“All these people are here to help you. Should we draw them some of your cute pictures when you are finished?”
 

“After the nurse finishes, how about I snuggle in bed with you and watch a princess movie?”

---

Just Before Procedure

In the last moments before a procedure, we hold back those tears pooling in our eyes, remind them of our promises, pray, say we love them and distract.

Sing a song.

Make funny stuffed animals voices.

Talk about what flavor popsicle we should choose afterward.
 

---

During Procedures

If in the room during hard things (IVs, urodynamic tests, etc.), use a gentle and steady voice, even if they are screaming. We try to “ground” them by:

Holding their hands and questioning, “I’m holding your hand. Do you feel it?”

Ask them to squeeze your hand as hard as they can.

Touch their face and ask them, “Can I see your eyes? Can you see momma? I’m right here.”

Kiss their forehead or rub their hair. “I’m here. I’m here. Do you feel my kisses?”
 

---

Let Them Feel

When I was a new medical momma, while my in-pain child was sobbing during an IV/NG tube placement or invasive test, I found myself repeating, “You are OK. You are OK.” Somewhere along the line, I stopped saying this, and started offering permission to acknowledge hard things.

The truth is that what they are experiencing doesn’t feel OK. So, instead, I say, “Does this hurt, baby? I promise if you’ll be brave, it will be over very soon.” 
 
These are gut-wrenching parenting moments. Unfortunately though, they are experiencing trauma.
And processing pain is essential. We don’t want them to soldier through or hide their feelings. Crying is a healthy response. It’s alright if they aren’t “fine” or “okay”. We can’t take away hurt, but we can help them process through it.
 

---

---

After surgeries are over, we don’t just move on. They’ve experienced trauma, so we find ways to let them talk about what they experienced and how they felt. It’s not fun, but it’s helpful.

---

Special Requests

Be an advocate. Talk to doctors and nurses about your child’s past medical trauma and adoption attachment.
 

Ask to hold your child during breathing treatments or finger pricks.
 

Ask for permission to be with your child until they are on “loopy meds” or asleep. (Some hospitals allow this, some don’t, depending on the procedure. Just ask.)
 

Request to be in the recovery room when your child wakes up.
 

If a hospital doesn’t allow this, don’t panic. Most don’t. Kids are far more resilient than we imagine.

We always tell our child later where we were and what we were doing while they were “asleep”. “We were in the waiting room waiting for a nurse to come and take us to see you. We prayed for you the whole time and went to buy you a balloon. We never left.”

---

Hospital Room

Provide familiar, sensory comforts: a favorite soft bear, fuzzy blanket, Play doh, something to squeeze or chew on. Rub your child’s back, listen to favorite tunes, or do a family handshake. Get in the hospital bed and hold them. On our last hospital stay, we used a diffuser with our daughter’s favorite scented oil.
 

Sometimes kids need to zone out. If your child is upset, it might be time for showing #769 of Frozen. If they are crying, turn it on and just gently ask questions and talk about the movie. Stick with it. They will eventually calm down when the room is calm again.
 

Other times, they need to not watch that 123rd movie. Turn on familiar tunes and read books. Color in a coloring book. Be the calm they need.
 

Tell them that after this is over, they’ll be going home and will soon start to feel better. Make no assumptions that they “get” what is happening.
 

Take full advantage of hospital play rooms, libraries, child life specialists, and art carts.
 

Find things to celebrate. “It was yucky to get your NG tube, but you did it! You are so very brave. Let’s make funny faces on SnapChat.”
 

These times are not fun. For every medical procedure we endure, I vote that we parents get badges or chocolate. We’re a strong bunch though, and we can do hard things.

---

In the end, most of the time that we wear a hospital ID sticker, we’re just doing our best, moment by moment, then hour by hour, until it’s day by day and we finally head home. We can’t expect ourselves to respond perfectly, but we can take some intentional steps about preparing our kids.

The good news is that these days will pass.

Even if there is more medical fun to come, we’ll walk into hospitals and we’ll walk back out. We’ll be the firm foundation for our little people, even if we are melting inside.
Because we love them, and it’s just what we do.

Courage, dear heart. – C.S. Lewis

Originally published on No Hands But Ours




Preparing Your Child for Medical Interventions: How to Pack for the Hospital

---

Our first overnight hospital stay with our newly adopted little one was unscheduled. We were already medical parents. We’d done outpatient procedures, therapies and medical appointments, but this was something entirely different.

There was no thoughtful packing, no considering our daughter’s favorite comfort items or even a toothbrush and clean undies for her mom and dad. Less than two weeks after arriving home from our second adoption trip to China, an appointment with a specialist led to a rushed, immediate admission for infection and sepsis. 

---

---

So, with minds racing, blood pumping and tears building, we walked into the children’s hospital admitting office with no packed bags, no trail mix and no beloved pillow. We barely noticed though, as all we could do was beg the Lord for our girl’s life and try to force our spinning minds to understand what was happening.

That overnight stay turned into eight days of trading off night duty and trips back home for shampoo, PJs, tea bags and blankets. We figured out what we needed as we went, and even managed a hospital birthday celebration. It was a crash course in Hospital Life 101. And by the time we rolled our girl out of the hospital in a red wagon, we were loaded down with bags, backpacks, balloons, multiplied faith, new tools in our medical parent toolkit and immense gratitude.

---

---

Now, reflecting back on three years and many more hospital overnights, both locally and hundreds of miles away from home, we are grateful for all the medical parent mentors, who helped us perfect our packing. For those who come after us that face hospital stays, we’d love to help ease your packing worries.

My biggest advice? Be lavish. This is not the time to enter into a minimalist packing contest.

Zip some comfort into your suitcases and don’t look back.

Yes, you’ll need socks and toothpaste, but think chocolate, favorite beverages, fuzzy socks, and chamomile tea for you and teddy bears, lovies and stickers for your child.

For your child.
Bring beloved comfort items like blankets, pillows and stuffed animals. They’ll need PJ sets, slip on shoes (Crocs or slippers), and fun socks. Also, depending on the length of stay, bring entertainment such a sticker books, Color Wonder marker sets, nail polish, Legos, Play-doh, bubbles and a toy doctors kit.

Most children’s hospitals have playrooms, child life specialists and volunteers hoping to bring comfort and smiles to your child. We check out books from the hospital library and borrow toys from the playroom. Between hospital and Ronald McDonald House donations, we usually come home with a new collection of toys. Still, I always pack both new and favorite small toys to entertain and pass the time. 

---

---

For you.

Bring comfort items like your favorite pillow, blanket, some chocolate, chapstick, lotion, comfy layered clothes, and slip on shoes. Also, bring an IPad, a book and some magazines. Depending on your hospital, you might also want to consider your own towel, a sleep mat (we skip this), and shower flip flops.

Bring snacks such as trail mix, chocolate, fruit, fun beverages and water bottles. Balance fun comfort foods with healthy snacks to keep yourself feeling well. Also bring quarters and dollar bills for vending machines. Your stay will likely be a mix of flurries of attention/testing with a team of medical staff, then hours of downtime, both in the small space of a hospital room. You’ll do lots of snuggling, movie watching, and walking the halls.

---

---

Carefully consider how you pack for your child’s hospital stay. They’ll be emotions, caretaking and loads of information to take in. Be good to yourself and your child. You can download our complete packing list here. If you have suggestions to share, please do. Let’s keep learning from each other.

Courage and solidarity, medical parents.

Originally shared over on No Hands But Ours.

Coming Home: Tips for Medical Needs Families (No Hands But Ours)

You are a newly home medical needs parent, and life might be feeling like triage. Your child needs to be catheterized, tube fed, dilated and medicated. They need therapy, glasses, wheelchairs, oxygen, blood transfusions, walkers, cochlear implants, casts, g-tubes and ostomy bags. They’ll need MRIs, IVs, ultrasounds, sleep studies, anesthesia, echocardiograms, X-rays, EEGs, CT scans, transplants and lab work.

You need to find therapists, schedule appointments, administer meds, inquire about test results, schedule a home health nurse, research treatments, order medical supplies, call the pharmacy, question the insurance company, and ask for specialist recommendations.

You’ll have to learn how to check oxygen levels, give enemas, administer PICC line meds, feed through a tube, and dress your little one around casts, braces and extensions.

You have other kids, husbands and jobs, and a life before that already had its own needs.
 
You’ve just begun the journey, and your emotions dart between fear, hope, sadness, weakness, hero mode determination, numbness, faith, weariness, a new understanding of joy, and gratitude. Human feelings and supernatural strength will step simultaneously together.
The journey might involve a surgery and a few appointments or maybe chronic care, surgeries and interventions.

You are navigating new waters.

---

---

Swimming just ahead of you in those waters, I offer a compilation of suggestions. Though your journey will be your own, may these speak hope into your experience.

1. Let your people be your people. This is the time for a community rally, not fierce “I can handle it” independence. Accept help. Lower your protective guard. If someone offers dinner, carpool help, or to launder your socks and sheets, you say yes. Let them step into your world, even if your house is chaotic and your thoughts scattered. Be honest about your needs. Let God include the village he’s surrounded you with in the story. The new intimacy you’ll feel will be one of the gifts you are given.


2. If your child’s health allows, give yourself time before tests, therapy and surgery. Bond. The rest will come. Establish family before poking, prodding and invasive tests performed by strangers. See one specialist at a time. Guilt and urgency will fight for attention, but it’s a marathon not a race.
 

3. Be ready to address medical trauma in your child. Pray against it, but be knowledgeable, sensitive and intentional.

4. God has something to say. Lean in. For me, I figured out quickly that this was bigger than adoption and medical needs, bigger than me and my child. It’s about heart change and relationships between a Father and his children.
 

5. Gather your team. Tap into the expertise of medical needs moms on FB for referrals. Your doctors, specialists and surgeons need to be attentive, gentle, team playing experts. Your gut and your God will give you discernment. Trust it. Don’t be afraid to get second opinions and try different specialists. (We saw one local specialist a few times and then decided that we needed to travel for better care. It needs to feel “right”.)

6. Grace for the “rules”. Normal parenting and adoption best practices don’t always apply. Don’t obsess over routine and schedules. Sleep, rest, play and snuggle whenever you can. Cocooning is recommended and helpful, but may look different if your child is critically ill.


---

---

7. Find victories to celebrate. The hard has its place, but so does celebration. Your family needs cones of ice cream, movie nights, special dinners and the volume turned high on dance tunes.

8. Admit that it is hard. Don’t fake it, cover it up, chin up or try hard to act normal. No matter the internal or external pressures we feel, we must give ourselves the freedom and time to feel what is to be felt. To look at the dark parts of the trail and not look away. God is allowing it, so we must consider that He’d prefer we not shut my eyes and pretend it is all fine. Our child’s pain messes with us. There is trauma to process.

9. Rarely do we take self-care advice, but expect there to be physical, emotional and spiritual fall-out from being hyper-vigilant, over-tired, worried and over-extended if you ignore your personal needs. Be intentional about caring for yourself while trying to swim upstream.

10. You will make mistakes. You will forget to give meds, make wrong decisions, wait too long to cath and miss appointments. Have grace on the ready.


11. Don’t get too far ahead. Focus one day at a time. Fight to let your tomorrow be tomorrow. If you spend so much time anxious about the next doctor’s appointment, you just might miss your appointment-less today.


12. Part of turning corners with a special needs child is YOU getting over YOU. Their limitations can consume you. You’ve stepped well past your limits, and must rely on good health insurance, medical expertise, therapists and our limitless Lord. Be wise in your care, but also let the childhood that they fight so hard for, be theirs. Let’s not always see them and only see limits, because then we miss out on little people with gifts and big personalities. Wake up to the wonder and fun of your fearfully and wonderfully made child, outside and in between all things medical.

13. Connect with parents of children with the same medical needs. Join a closed FB group to ask your flood of questions, gain hope, connect, giggle, flounder and vent with people who face what you face.
 
14. Move your marriage up the triage list. You have a partner, so practice good partnership.

15. Release your grip and accept that in much of this, you are rendered helpless, but not hopeless. Weak, yet not defenseless. Consider who God is to your children, and let your faith roots grow deeper still.

---

---

May your smallness illuminate God’s bigness. Courage, dear heart.

– photos courtesy of Emily Adcox

God of My Children

I had the opportunity to read this, which is a repost (originally published on Ungrind Webzine,) at Created for Care this past weekend at the "Chocolate, Chai and Chatting: Night at the Mic".  I'm sharing again here as "Medical Momma Toolkit" encouragement. 

...................................................................

Nil per os. A Latin phrase meaning “nothing by mouth.”

 
For six days, an NPO sign has been on my daughter's hospital room door. The sign will stay up for two more days. She is recovering from colorectal surgery, and her fragile system requires it. Dextrose, sodium chloride, and potassium flow from an IV bag to a PICC line to nourish and hydrate her tiny, 21-pound body.

 
It seems cruel and unusual punishment for a little person and this “show love with food” momma. With pleading eyes, she asks, “Loller? Mom, loller?” Her fingers make a W against her chin signing, “Water?” I melt inside, divert my eyes from her confused expression, and distract with stickers.

 

God sometimes allows our tender spots to be punctured. My heart is most fragile for my kids, and as much as I want them to be off limits, they aren’t. When they are vulnerable, this momma bear stands at attention. Slowly though, I’m learning to trust and release my grip.

 
As a new parent, I lived contentedly with the illusion that I could protect my kids. That it was me, myself, and I who met their needs. I planned their days, fed their bodies, and claimed full control of their little lives.

 
I let myself believe that I was their God.

 
Then, little by little, God pierced holes in my control bubble. First came surrenders to backyard scrapes and playground hurt feelings. Then to preschool classrooms and the deep end of the pool. I had to choose to release rather than hold tight.  

 
The Lord kept on pressing into my control illusion, increasingly asking for wider surrender. Next, a mission trip put an ocean between mother and her babies.  I labored over leaving, and planned every activity, outfit, and meal they’d have. To board the plane, more control was severed. And when I returned? They'd made their own plans, had a ball and created a new grandparent bond.  I wasn't so vital after all.

 
Then came hurts that couldn’t be treated by Tylenol, infections not cured by Amoxicillin. First was elbow surgery for one daughter, then two bladder surgeries and a neurosurgery for another. Walking away from my child lying limp under anesthesia in operating rooms filled with computer screens, instruments, and doctors in sterile scrubs, left me utterly helpless and fully surrendered.

 
I had to consider who I think God is to my kids.

 
I tell people I trust the Lord, proclaim His miracles in our lives, but do I actually trust Him with my kids? Believe He’s a more powerful force in their lives than I am? In my head, yes. But in my heart, I can’t honestly say yes just yet.

 
He pushes my control buttons, but doesn't just leave me floundering. He asks me to yield authority of my kids, but He makes His presence known. Weakness is replaced by strength and unexplainable peace comes. My small faith grows. It's roots spreading wide and deep into my motherhood.

 
Now again, here, I must surrender deeper still. I’m sitting with my NPO daughter listening for God’s voice. Truthfully, my heart cries out, questioning why this. My girl is sustained from an outside source, fully beyond her parents. She’s suffering, and I’m stripped of control. I offer only arms to comfort. I blow bubbles, give sponge baths, push the IV on slow strolls, and take vitals on baby dolls.

 

Though I’m rendered helpless, a sustaining source flows. She’s plugged into an IV bag steadily streaming strength. I see the lesson being whisper-shouted into my heart. There is a sustaining Source we can release our children to. One stronger than IVs and ourselves. We parents tend to spin our wheels, worry, hover anxiously, and scramble for plans, trying to be the God of our children.  We underestimate His role.

 
I’m not savior to my kids. I'm limited, weak and just don't have it in me. 

 
I am put in my place this week. Reminded to unclench my fists. Reminded that her Father in Heaven carried her before we ever did.  Reminded that when she was born a preemie with multiple birth defects, He was there.  Reminded that He carried her through surgeries and hospital stays when we couldn't.  His grip is stronger than ours.  His nearness deeper.    His strength greater.  And He's always there.  Just as near as the IV. Just as powerful. Enough, moment to moment.

Perhaps I can worry less, and let my role be band-aids, nail polish, chocolate chip cookies, prayers and hugs.

 
Jesus' promise in John 6:35 means something new to me.  “I am the bread of life. Whoever comes to me will never go hungry, and whoever believes in me will never be thirsty.”

 
And John 4:14, “But whoever drinks the water I give them will never thirst. Indeed, the water I give them will become in them a spring of water welling up to eternal life”.

 
When I unclench my fingers, anxiety recedes, hope returns, and I can stop striving.

 
The uncomfortable truth is that my children will face challenges that render me helpless. But my trust has deeper roots now.

 
Day six nil per os and her heart still beats. She still smiles and sleeps. So, when the NPO sign is removed, and broth and noodles served, I want to hold onto the lesson.

I’m not a stronger momma now, I am a decidedly weaker one.

...................................................................

Courage, dear hearts. 


This is post six in the series, "Medical Momma Toolkit: A Tips, Tricks and Encouragement Series". 

 

Packing Tips for Your Child's Surgery or Hospital Stay

Our first overnight hospital stay was unscheduled.  There was no thoughtful packing, no considering our daughter's favorite comfort items or a toothbrush and clean socks for her mom and dad.  Less than two weeks after arriving home from our adoption trip to China, an appointment with a specialist led to a rushed, immediate admission.  So, with minds racing and tears building, we walked into the children's hospital admitting office with no packed bags or favorite pillows.  None of those things mattered much in the moment though.  It was only about making our girl well.

That overnight stay turned into eight days of trading off night duty and trips back home for shampoo, PJs, trail mix and blankets. 

 We figured out what we needed as we went, and even managed an in hospital birthday celebration.  It was a crash course in Hospital Life 101.

And by the time we rolled out in a glorious, red wagon, we were loaded down with bags, backpacks, balloons, multiplied faith, new tools in our medical parent toolkit and immense gratitude. 

 

Now, reflecting back on a year of many more hospital overnights, we've perfected our hospital packing and happily help other families consider how to fill their suitcases for scheduled surgeries with hospital stays.  We are also extra grateful to all the medical parent mentors who have shared their packing tips and wisdom. 

 

My biggest advice?  Be lavish.  This is not the time to enter yourself into a minimalist packing contest.  Zip some comfort into your suitcases and don't look back. 

 

Yes, you'll need socks and undies, but think chocolate, fuzzy socks, and your favorite tea bags for you and teddy bears, loveys and stickers for your child. 

 

For your child, bring comfort items like blankets, pillows and stuffed animals.  They'll need PJ sets, slip on shoes (Crocs or slippers), and fun socks.  Also, depending on the length of stay,  bring entertainment such a sticker books, Color Wonder marker sets, Play-doh, bubbles and a toy doctors kit. 

 

Most children's hospitals have playrooms, child life specialists and volunteers hoping to comfort your child and make them smile.  We check out books from the library and borrow toys from the playroom.  Between hospital and Ronald McDonald House donations, we usually come home with a new collection of toys.  Still, I always pack small toys from home to entertain and pass the time. 

 

For you, bring comfort items like your favorite pillow, blanket, some chocolate, chapstick, lotion, comfy layered clothes, and slip on shoes.  Also, bring an IPad, a book and some magazines.  Depending on your hospital, you might also want to consider your own towel, a sleep mat (we skip this), and even shower shoes if showers are shared (our two hospitals have private bathrooms). 

 

Bring snacks.  Trail mix, chocolate, easy to eat fruit and water bottles. 

Your stay will likely be a mix of flurries of attention/testing with a team of medical staff, then hours of downtime, both in the small space of a hospital room.  You'll do lots of snuggling, movie watching, and walking the halls. 

 

Carefully consider how you pack for your child's hospital stay.  They'll be emotions, caretaking and loads of information to take in.  Big good to yourself and your child. 

 

You can download my complete packing list here.  If you have suggestions to share, please do!

 

Courage, dear hearts. 

 

 

 

This is post three in the series, "Medical Momma Toolkit: A Tips, Tricks and Encouragement Series"

Picture Books About Hospitals (Medical Momma Toolkit, Post One)

When a surgery or hospital stay for your child looms, it is easy to get caught up in all of our adult preparations.  It's even easier to totally forget about preparing your little -soon to be- patient and her siblings.  Our little people have sensitive spirits and catch on quickly when mommy and daddy are heavy on emotion.  Over the past year plus of 12 hospital encounters with three kids, we've learned some things about preparing ourselves and our kids.  

One of the biggies?  Knowledge.  They say it is power, and that's truth.

Little minds tend to wonder and wander onto all the possible scary things that might happen at a hospital.  Adults are weary of unknowns and so are kids.  Parents can research and ask lots of questions, but kids need some prep too.  Picture books are the perfect way to inform them about what they might see and experience. 

From hospital bracelets to vitals, IVs, scrubs and masks, the more they see in advance, the less scary the experience will feel.   Whether your child has grown up experiencing hospital stays, or faces one big scheduled surgery, I recommend children's books for before, during and after.  They give a voice and vocabulary to the hospital experience.  Siblings will benefit too as they process through their own emotions and fears about what their brother or sister will experience (or has experienced). 

Here are some recommendations:

Curious George Goes to the Hospital

by Margret & H.A. Rey

 

"It's going to hurt, George," she said, "but only for a moment." 

  Franklin Goes to the Hospital

          by Paulette Bourgeois      

             

"Everybody thinks I am brave, but I'm just pretending.  X-rays will show that inside I'm scared."

Dr. Bear replied, "Just because you're afraid doesn't mean you aren't being brave.  Being brave means doing what you have to do, no matter how scared you feel."

Harry Goes to the Hospital

by Howard Bennett

 

Harry's mom cuddled Harry and explained that Dr. Meadows wouldn't give him an IV if he didn't need it.  Dr. Meadows told him the needle part would feel like a sharp pinch, but it would only be in his arm for a few seconds.  The part that stayed in his arm would be a soft plastic tube that let the water go into his body, and it wouldn't hurt at all.

Out and About at the Hospital

by Nancy G. Attebury

 

This is the operating room.  We call it the OR for short.  You can see that it's very clean and bright.  Doctors and nurses who work in the OR wear caps, masks, plastic gloves, special tops and pants, and shoe covers.  Everything is sterile.  We want the OR to be free from germs. 

When Molly Was in the Hospital: A Book for Brothers and Sisters of Hospitalized Children

by Debbie Duncan

 

After a while, Mom and Molly spent more time at the doctor's office than they did at home.  Dad said Molly needed lots of tests.  "Are they like spelling tests?" I asked. 

"No," Dad said, smiling a little.  "They are x-rays, blood tests and things like that."

Little Critter: My Trip to the Hospital

by Mercer Mayer

 

Follow brave Little Critter as he rides in an ambulance, meets the doctor, and gets his first X-ray and his first cast.

 

Usborne First Experiences Going to the Hospital 

by Michelle Bates

 

Ben Bell is not feeling very well. His ear aches as it often does. Mrs Bell takes him to see Doctor Small who checks his ear using an otoscope. He tells Ben that he needs to have an operation at the hospital to make his ear better. On arrival at the hospital Ben's mum helps him to change his clothes and unpack. He is not allowed to eat anything for six hours.
 

The Going to the Hospital Sticker Book

illustrated by Stephen Cartwright gets my highest recommendation. 

 

I LOVE this book and will be buying it for my kids and friends' kids as they approach hospital stays. The illustrations are simple and informative with spaces for stickers of the equipment and other things they might encounter in the hospital.  So fun! 

 

We have had all of these books in our home this week, and all of our kids have been reading them and pointing out things they've seen and experienced.  For us, they've been a great way to retell our hospital experiences.

 

If you have other recommended books, I'd love the suggestions. 

 

Courage, dear hearts.

 

This post is pot one in the Medical Momma Toolkit: A Tips, Tricks and Encouragement Series

 

 

Medical Momma Toolkit: A Tips, Tricks and Encouragement Series

Parenting a medical needs child changes everything.  It is refining, refocusing, hard and hilarious.  In our first year of medical needs parenting, we've learned lots of lessons, most of them by trial and error (heavy on the error if we are putting all our cards on the table).  This year has stretched and blessed us, and also given us a big connection with other medical families.  My circle of solidarity with medical mommas has widened, and my heart longs to serve and encourage them. 

So, I give you a new series, the "Medical Momma Toolkit: Tips, Tricks and Encouragement". 

Guest Posts:

• Day Surgery To Do List by Sharon Ankerich
• To Travel or Stay Local for Medical Care?  by Sarah Fischer
• ER Visits and Advocating for Your Child by Brittan Gotbeter
• Extended Hospital Stays by Whitney Fowler
• Allowing It To Fall Away: Relationships by Becky Ketarkus

 Original Posts:

• Picture Books About Hospitals
• Videos about Hospitals and Medical Needs
• What to Pack for Your Child's Surgery or Hospital Stay
• Medical Needs and Marriage: Ten Tips and  Date Night Q and A Printable
• Hospital Life 101
• Day Surgery: What You Can Expect
• Making the Most of Specialist Appointments
• Dealing with Insurance
• Medical Trauma and Your Child
• Preparing and Staying Connected with Siblings
• Mom and Dad the Advocate
• Helping a Medical Needs Child Cope
• Friendships and Community
• Counseling, Anyone?
• A Time to Laugh
• Post Hospital Stay Shell Shock
• Medical Needs Momma Funnies

Republished Posts:

• God of My Children
• 10 Things Families of Medically Fragile Children Want You to Know
• Letting Others Bless You (A Mary to Martha Nudge)
• 20 Ways to Help Families Facing Medical Challenges
• Upheld
• Chronic
• Saying Yes to Complex Conditions

I am so grateful to the medical mommas who have agreed to guest post, and I anticipate learning a great deal.  As for me, I have no expertise, just an eagerness to share some tips, tricks and encouragement with you, and a hope to bless you in your medical journey. 

Courage, dear hearts. 

Chronic: The Race Set Before Us

I am coming to terms with it.  This is not passing.  It’s not over after a surgery, or two.  Or after a therapy session, or three.  The first year is behind us, but there are more miles in this marathon.  I’m discovering what chronic means.  I’m learning that adopting a child labeled medically complex truly does mean “continuous care” and it will “require services from different practitioners in multiple settings over time“. 

 

We knew it would be a stretch, but we didn’t expect to unravel completely.   We cherished our comfy, together feeling, unaware we were wound around the wrong things.

 

Life is now a marathon of appointments,  surgeries, X-rays, nurse calls, research, MRIs, infection, complications, testing, PICC lines, anesthesia, ultrasounds, therapy, and care taking.  And our emotions dart between fear, hope, tears, weakness, hero mode determination, numbness, faith,  exhaustion, new joy, and gratitude.   Human feelings and supernatural strength step simultaneously together.

 

So we must face what chronic and complex mean.

 

The antibiotics will continue. 
The appointments will continue.
The care taking will continue.
The “catastrophic” insurance medical cap will be met. 
More procedures. More medical supplies.  More hurt.  More miles to go.

 

We wonder if our prayer team will start dwindling.
We wonder if people are weary of medical talk and prayer requests. 
We wonder if we’ll figure out how to truthfully yet concisely answer, “How is she?”
We wonder if telling the truth is whining, because we should be running the race better. 
We wonder if doctors are making the best decisions.
We wonder if God wants us to hope for miracles or accept realities.

 

Well intentioned people in our lives regularly encourage us with, “It will be fine.”  “She’ll be fine.”  “You’ll be fine.”  But what do you do when your heavy heart simply doesn’t feel “fine” watching your child endure continual procedures, tests and hurts?   Should we try harder to be fine? 

 

We wonder how parents of more complex children do it.  We think, “Well that family adopted a child with the much harder XYZ disease and they seem together.”  Or, “That family has adopted four kids with complex needs, and are adopting three more, what’s my problem?” 

 

But our child’s pain messes with us.  When discomfort comes daily, tears flow regularly, painful tests are ongoing, and caretaking that hurts is required, there is trauma to process.    Is my faith growing?  Yes.  Am I feeling blessed and refined?  Yes.  But there is still trauma to process. 

 

No matter the internal or external pressures we feel, we must give ourselves the freedom and time  to feel what is to be felt.  To look at the dark parts of the trail and not look away.  God is allowing us to walk through something chronically hard.  From the world’s perspective our child might end the race “fine”, but a parent’s heart still has steps to take.   

 

Read the rest over at No Hands But Ours. 

 

Special thanks to Tish Goff for her beautiful photographs.

Twenty Ways to Support Families Facing Medical Challenges

"Let me know what I can do." 

It is an offer we make to families facing illnesses, hospital stays or medical challenges.  We all say it, and we mean it, but it is also an offer we know they won't take us up on.  It is not a matter of gratitude.  Help offers are always appreciated.  Help is likely needed, but those families might not have the energy to muster up suggestions or the ultra vulnerable response, "Yes, please help me."

Our family's past year was a giant medical challenge, and we have been loved right through it.  Our friends gently and intentionally placed us on a mat and heaved us over their heads for carrying.  From our position perched on the shoulders of others, we were taught to graciously say yes to receiving offered blessings.  We were loved on in a host of creative ways, and our hope is to pay that forward to others when needed.  

But how can any of us show big support in ways that don't max out our already maxed agendas?  First, we remind ourselves that it's not about perfection.  It's not about impressing.  It's about loving.  It's about sending the message that you will stand shoulder to shoulder in the hard places.  It's simply about showing up.

Here are twenty incredibly thoughtful and helpful ways in which our family has been shown support.  I hope they spark ideas for ways your family can serve others.    Pick one of these and go for it when someone facing a challenge doesn't respond to, "Let me know how I can help you." 

..................................................................................................................................................................

1.  Meals.  A family might be capable of toasting some bread and scrambling up some eggs, but the gift of a meal is as much of an emotional blessing as it is physical help.    My favorite site for online coordination is Take Them a Meal.  The organizer can easily set up and send out a calendar with sign-up slots.  Volunteers can see what others are bringing and also get emailed reminders.  Food equals love, people.   Many times when my family saw friends standing in our doorway with soup and salad, our hearts were lifted.  And it was their presence and their hugs that mattered even more than their ciabatta bread. 

Meals do NOT need to involve your finest, most complicated recipes.  Rotisserie chicken and grocery store sides are all kinds of yummy too.  This is not about exhausting yourself.  It is about blessing by doubling your spaghetti dinner or halfing a big pot of chili. 

2.  Group Prayer:  Get your friends, your life group, or your neighbors together to pray big, bold, out loud prayers prior to a surgery.  It doesn't have to be a big event, just a circle spilling their requests before the Lord. 

3.  Voxer Messages.  Download the Voxer app on your phone and have your friends do the same.  This app was a sweet lifeline during one of our long, out of state hospital stays .  It works like voice texting, and allows an ongoing conversation that you can listen to, or record, when you get free moments.   Uninterrupted, coherent phone conversations while in the hospital are hard, but hearing the voice of those who love you is a spirit lifter.  I might have spilled my guts in LONG Voxers a time or two. 

4.  Hospital Care Bags: Fill a bag with some comfort items for weary families spending days in sterile hospital rooms.  Include things like chocolate, magazines, granola bars, chapstick, fuzzy socks, chocolate, tea, bags of grapes, nuts, hand lotion, a journal and pen, and more chocolate of course.

 

5.  Visit.  Always ask first if company would be a blessing.  If it's a yes, then show up to be shoulder to shoulder in support.   Consider asking if you can pick up some non-cafeteria food.  When you show up with a Chipotle or Panera bag, don't be surprised if you see tears.  Try keeping the visit to under an hour, as patients get tired easily. 

6. Text Personal Videos/Knock Knock Jokes:  Don't have time to visit or whip up lasagna?  No fear.  Pull out your phone, tap record and have your kids, or your whole family, send a get well video message.  Send videos of the kids telling goofy knock-knock jokes.  In the easiest way possible, you are "present" on a hard day. 

7.  Gift Cards: It can't be denied, we all love them, and they are a big blessing to a family facing medical challenges.  Think Starbucks, Subway, hospital meal cards, and restaurants that deliver. Our family also got an iTunes card which was a fun pampering of new songs and games to entertain us.   If travel is required for surgery, gas gift cards help lighten financial burden. 

8.  Hospital, Ronald McDonald House, or at Home Mail:  Send a card.  It will matter.  Kid art is the best.

9.  Balloon, Flower or Cookie Bouquet Delivery:  Ever see someone hand a two year old a balloon on a string?  Yep. 

10.  Text or Message:  It means something for someone to remember where you are and what you are facing.  You might not get an immediate response, but don't think it too small an act.  Don't wait until you have the right, profound words to share.  Just send your love. 

11.  Prayer Blankets:  We were given an adult and Evie size hand tied fleece blankets for an out of state hospital stay and we snuggled up under those blessings with deep gratitude.   Just buy two pieces of fleece fabric and create "no sew" blankets.  These become "prayer blankets" when loved ones pray over the family as they tie pieces. 

 

12.  Send a Laugh: Jimmy Fallon might bring a smile during a hard moment.  Email a clip. 

13.  FREE Online Hospital Cards:   Lots of hospitals have free inner hospital mail.  You can easily create your own card online and the hospital will deliver it.  Surprise mail is always a win. 

14.  Child Entertainment: Fill a plastic tub with nail polish, temporary tatoos, fuzzy & fun socks, Color Wonder markers and books, glow sticks, Play-Doh, bubbles, jumbo coloring books, or stickers.   

15.  Prayers, Scripture, or Card Compilation: Ask friends to each share a verse of scripture that they'll be praying over the family and then give them in an envelope, or have those friends each type a prayer to be printed and attached together.

16.  Make a Spotify Playlist:  Use this fun website to create 2015's version of the mix tape.  Find songs, save to a playlist and share for late night listening or to fill a hospital room, or home in crisis, with songs of hope.  Here's a playlist I share with medical mommas. 

17.  Laundry:  Give a couple days heads up that you'd love to serve by doing laundry.  Sheets, socks, underwear and all. 

18.  Unplanned Blessing Drops:  Several times post-surgery for us last year a friend showed up with warm banana bread. This act of kindness blessed us big as it was pampering, comforting and helpful, a support trifecta. 

Knock on a door with breakfast muffins, a devotional book, a bowl of cut fruit, a handful of flowers, pre-cut veggies and hummus, or cookies.  It doesn't need to be a full meal to help and bless. 

19.  Offer a Play Date or Fun Outing for Kids: Whether it is a parent who is sick, or a child, offering some fun time for kids/siblings is so helpful.  Knowing your kids are getting to have fun is relief for parents' stretched out hearts.  Be specific, "Can the kids go to a movie with us on Thursday night?" 

20.  Date Night Babysitting:   Offer to babysit so the parents can decompress over dinner or de-stress with some laughs at a movie.    Be specific, "Can I babysit on Friday or Saturday night?"

.....................................................................................................................................................................

There are so many creative ways to bless families facing medical challenges. 

Somehow still, I often miss it. 

A friend's child receives a hard diagnosis, someone faces a challenging recovery, or another friend's husband faces a cancer battle. 

So I get scared or I get sad.  I'm not sure what to say, so I say nothing.

I plan to come up with the perfect words, but I never do.

Or, I say, "Let me know how I can help."  But I know they'll never respond. 

I've missed it so many times. 
 

But now we've been on the receiving end of community's lavish care, and we've got some paying it forward to do. We know what to do and how to do it.

All of us were made to walk through life' seasons together, both the hard and the beautiful, celebrating the joys, and also carrying one another's burdens.