Preparing for and Enduring Surgeries and Procedures for Medical Needs Children

 



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*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.

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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.
 

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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.”

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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.

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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.

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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.
 

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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?”

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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.
 

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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?”
 

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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.
 

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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.

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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.”

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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.

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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

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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. 

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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.

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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. 

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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.

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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.

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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.


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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.

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

– photos courtesy of Emily Adcox

Day in the life of a "Therapy Mama": Guest Post from Julia Bennett

I'm so happy to return from a little "Medical Momma Toolkit" sabbatical (!!), with a guest post from the very wise, generous and servant-hearted, Julia Bennett.  Julia is mom to four precious children, and their family is working toward the adoption of another little boy.  She is an administrator for the rapidly growing and ever-helpful "China Special Needs Information" Facebook group, which works to educate and support parents with current or potential special needs by creating a forum for parents to ask all their medical, therapy and other special needs questions.  Big thanks to Julia for sharing, loving and serving so beautifully.   She is a "therapy mom" willing to share what she has learned, and I am so grateful. 

 

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Some moms are "soccer moms". I'm a "therapy mama". God has blessed me greatly with my four children (Soon to be five, after we complete the adoption of our new little guy!). Two of my precious ones have developmental delays. Scratch that. Make that three with developmental delays once we get our new guy home. 

Therapy Monday Snapshot:

• 6:00am. Up and at 'em to get my crew of 4 little loves (6, 5, 3, 3 years old) dressed, fed and out the door. It is therapy day. Diaper bag...check. Morning snack...check. Water bottles...check. School work...check. Let's roll! (Why does it seem like we are moving out of the house, when we'll just be away until noon?!)
  
• 7:30 am. Physical therapy appointment for Josiah, while Drew simultaneously receives occupational therapy at the same therapy location.
  
• 8:30am. Drew gets speech therapy, while Josiah reads books in the lobby, his sisters work on their home school assignments, and I am on the phone with the neurologist office who is calling to reschedule an appointment for the third time. Sigh. (Note to self. Text mom to see if she can watch the other kids during the appointment).
  
• 9:00am. Josiah's turn for speech therapy while the girls continue their school assignments and I work to keep Drew from having a complete sensory overload meltdown in the waiting room. (Can this count as my upper body work out for the day? Yes? OK, good.)
  
• 9:30am. Snack time in the car while we drive to the local public school where Drew has his 3x/week speech class. The car time isn't wasted though, we all rock-out to our memory work skip counting math songs on the way. (Multi-tasking points for mama. Oh yeah!)
• 10:20 We all pile out of the car and into the school lobby to receive a 5 minute parent-education lesson from Drew's school speech therapist before he goes into class. Alyssa takes her big-sister role seriously and always makes sure we try and follow up with the home assignments that the speech teacher gives us.
  
• 10:30 While Drew is in class, the other kids and I pile back into the car and head to a nearby park for recess or to the library to check out some books.
  
• 11:30 Pick Drew up from his therapy session at school and arrive home just in time for lunch at noon, but not before rocking-out to more memory work on the drive home. We sing our history sentences this time and the kids include the hand motions. I'm sure we are quite a sight as cars pass us by.
  
• 1:00 After lunch it is rest/nap time for all, because-HELLO-we just had 5 therapy appointments before noon on a MONDAY!

For us, this is our normal. We've worked it into our routine, and are so very thankful to be able to provide therapy and get help for our boys. People ask me, "How do you do it all?"

 

First of all, I don't. We aren't able to participate in some activities that we used to, but that is ok! This is a season of life, and we are happy to embrace it.

Second of all, routine. Routine has been absolutely key for us. We have a game plan that works pretty well for our family, and we do all we can to stick to it.

•  Monday is our intense therapy day, where we have both private therapy and public school therapy. (Bonus points: the girls "get" to do school work in a different location than at the table at home. Variety is the spice of life, right?! Or, sometimes they stay at home with their rock star Dad and do science experiments or projects with him.)
• Tuesday afternoon is reserved for all medical related appointments (specialists, pediatrician, well-visits, eye doctor, AFO fittings, dentist appointments, etc.). I try desperately to plan appointments well in advance and to only schedule appointments during this time if at all possible.
  
• Wednesday:  Drew has public school speech therapy.
  
• Thursday: I work on anything related to medical bills and insurance issues.
  
• Friday:  Drew is back for public school speech therapy.

Routine. It is a beautiful thing. Routine creates normal. Our medical appointments and therapy sessions are not life's interruptions or burdens for us. They are our life, and we choose to embrace it!

I try my very best to make it fun for the kids. We explore new parks, we arrive at the children's hospital early so we have time to stop and see the lego display, we take our school work to Starbucks and sip on a tasty beverage while Drew is in class, we get to know the receptionists, therapists and staff and they become like family to us.

If your calendar is full of therapy and doctor's appointments, let me encourage you. It is worth it. You can do it. Your child is worth it. (It can even be FUN!)

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Here are some things I've learned along the way:
• The receptionist/scheduler is your new best friend. Truly, you want her on your side. She has power to make things happen that can help you.

• There are key times of the year where many people change their schedules. Watch for these times to help get a therapy time that works best for your family.

• Make the most of waiting time. Meal planning, phone calls, home school, one on one time with other siblings.

• Include siblings. Let them help reinforce what was learned during therapy at home.

• Evaluation days can be tough. I would much rather sit and talk about how wonderful my child is, but in order to continue getting the services that my child needs, sometimes we must talk through where they are behind and plan their next set of goals. I've learned that evaluation days can be tough for me emotionally, so I try and keep that in mind and maybe even plan a little something to look forward to later on in the day.

• The therapist treats the symptoms and is not the doctor. Don't forget to seek medical doctors to get a diagnosis if necessary, but therapy can often go on without a diagnosis.

• There are many opportunities to reach out, serve and encourage other parents with special needs kids and build relationships with everyone that you encounter (therapists, receptionist, social worker, etc.). Don't miss these precious opportunities.

• Work at home. Therapy isn't just about the appointment time.

• Pinterest therapy boards. There are many wonderful ideas online that are easy to duplicate at home.

• Try and sit in on therapy sessions so you know what to work on at home.

• Have a relationship with the therapists, social workers and teachers.

• Know your insurance benefits like the back of your hand.

 

Being a "therapy mama" might be a crazy life, but it is a life full of love, celebrations, compassion, joy, tears, struggles and triumphs.  And I wouldn't trade it for the world.
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Check out the rest of the posts in the "Medical Momma Toolkit".

 

 

Allowing It To Fall Away: Relationships and Medical Parenting, A Guest Post by Becky Ketarkus

In our experience, adopting a child with medical needs has both enlarged and shrunk the number of relationships in our lives.  It's widened our overall network, but decreased the circle of friends we actually do life with.  In her guest post, Becky Ketarkus, shares about this experience of having relationships fall away after adopting kids with medical needs.  

Becky is a mom of ten who has earned her credentials as a medical momma.  Read through her blog, The Full Plate, and the term supermom will come to mind.  She's a busy momma, an adoption advocate, small business owner, and pediatric advanced practice nurse.  She does all this while also juggling specialist appointments, surgeries, therapies, school and meds.    That she has shared some of her precious time to encourage other moms tells much about her heart. 

Fist pump to you, Becky.  Yes, yes, yes.  You nailed it.

 



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Mom Confession:  Prior to having children, my relationships with friends, and even family, looked completely different. 

 

That’s a no-brainer, right?  I think everyone who has a child or children will tell you that their relationships changed drastically once they became a parent.  You tend to flock to people who are in the same place as you in life.  Birds of a feather and all. 

 

I am also an extrovert.  So, I tend to ‘know’ about a million people.  In fact, people who know people who know me, are pretty sure I ‘know’ everyone.  I love chatting, connecting and relating to other people.  You don’t have to be a mom, I’ll still chat you up.  As my husband will attest, I can strike up a conversation with anyone.  So can he.  We’re people people. 

 

We never let the fact that we have an above average (let’s be honest, WAY above average) number of children truly isolate us.  We always have a network of people we can complain, celebrate, commune and grieve with.  For us, parenting has never been the isolating circumstance that it is for some.  As we added children to our family, our circle grew.  People rejoiced with us.  It was truly beautiful. 

 

Mom Confession:  That all came to a grinding halt when we adopted our eighth child.  And, I allowed it.  In fact, I welcomed it.

 

If you’ve read about us over at The Full Plate, you know that my husband and I are the very lucky parents of a child with severe Congenital Heart Disease.  We adopted her knowing she had a heart defect, but the severity of it surprised us a little.  When our daughter, Tess, came home, she was declared inoperable.  We were told she would die, likely before she reached her teen years. 

 

Life stopped. 

 
The social me, the chatty me, the me who cared about some things she shouldn’t have before, died a little too.  My soul focus became on finding an answer for our girl that we loved so much, an answer that didn’t involve losing her.  I stopped volunteering at school.  I stopped going out with friends.  I even stopped shopping.  Yes, for those of you who know me, I.stopped.shopping.  Losing all the things that had comprised me before, no matter how shallow they seemed, cost me many relationships.  For the first few months after Tess’s diagnosis, I let it all fall away.  Everyone who wasn’t vital to me fell away. 

 

It will sound so cliché, but the people who mattered, the ones who really knew me, stayed.  Even though I put on a brave face, the people who truly knew me knew that I was falling apart.  They didn’t ask how I was.  They didn’t ask about Tess.  They just brought meals, hugged me, and continued to tell me about all the great sales.  I grieved the loss of the others for about five minutes. 

 

The relationships that involved complaints about my behavior change, the ones that involved criticisms like ‘Becky doesn’t care about her children’s school anymore!’ or ‘Becky is so anti-social lately, she never goes out for drinks’ or ‘Becky doesn’t call ME anymore to ask about ME!’ are the relationships that needed to fall away.  They were also a litmus test upon which all future relationships shall be based. 

If I don’t think the person will ever call to ask me about me, or show up when I need them, then I allow them to fall away.  Sadly, this falling away involved some family members as well.  This too, was surprisingly freeing. 

 

I’ll still chat with everyone.  I still seem like the same extrovert I was before.  But, when it comes to real relationships, our network has shrunk significantly. When it came right down to it though, that doesn’t sadden me at all.  In fact, it prepared us to add two more children with special needs.  It helped us to understand what really matters. 

This. 

 

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This is post ten in the blog series, "Medical Momma Toolkit: Tips, Tricks and Encouragement". 
You can read all the posts here.   

 

 

 

Extended Hospital Stays: When Things Go Bad, Guest Post by Whitney Fowler

Sometimes hospital stays don't go as we plan, and our kid's stay is extended.  Other times, the complexity of their surgery requires longer stays.  Either way, it is hard on a momma's heart and a challenge for the whole family.  Whitney Fowler knows the challenge well.   From September 2013 to January 2014, just after bringing her home from China, she endured a 126 day, multiple surgery hospital stay with her medically fragile daughter, Lizzy. 

 

Whitney is on the other side of that gut-wrenching experience now, but is still knee deep in the waters of medical parenting.  Her days are filled with therapies, specialist appointments and extensive home health care.  Somehow still, she longs to serve and desires to connect with, encourage and advise others who parent complex kids.  I am grateful for her willingness to share her story and extended hospital stay tips. 

 

You can read more about her journey on her blog, I Will Run to You. 

 

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The homework is done.  Under the advice of the best specialists, and after much prayer, you’ve decided on the best plan of action for your child.  The time has come, and you prepare for your 1-2 week recovery time in the hospital.  You even allow for an additional week inpatient, because you’re a reasonable kinda' girl.  You are prepared for whatever is thrown at you.  You pack your emergency chocolate and bring your comfort items from home.  You even thought to take along flip flops for the community parent shower.   BRING IT ON!  You are ready to conquer this and get back home!

And then your child becomes that 1-5% of the population who proves the textbooks wrong.   Everything you acknowledged on the consent form you think “will never happen to us” starts happening.  Nothing seems to go according to plan. 

 

Days turn to weeks, weeks turn to months…

 

You begin to question if you did the right thing for your baby in the first place.  Should you have gone somewhere else?  Should you have chosen a different procedure?   Should you have just left things alone?  Would things ever be normal?  Could I have done something different? 

 

 

Doubt creeps in and we start “shoulda, coulda, woulda-ing” ourselves into a spiritual downfall.   Surely God sees you?  Surely He will fix things and we’ll walk out those doors next week?  Surely???

The chocolate has run out.  You start heading to the vending machines and treating yourself to dessert in the cafeteria.  You’re in survival mode after all.  Don’t do that.   You will eventually get out of there and those eating habits are really hard to break while in the trenches of figuring out your new life at home.  

 

You start shutting the curtain or door to the room because you just want to be alone in your suffering.  Why bring anyone else down?  Don’t do that.  Again, it’s really hard to break that seclusion habit once home.  

 

You stretch yourself thin trying to do everything on your own.  You cannot leave your child because they’re still learning how to trust you.   You wear yourself out and drain your marriage dry.  Don’t do that either.   People want to help and your spouse is hurting just as much as you are.  If you open yourself to the idea, you will see there are family, friends, nurses, child life specialists, therapists, and/or doctors willing to go the extra mile for you. 

 

It takes a while, but your little one will develop relationships with certain caretakers and you NEED to take advantage of this.  For your own good and ultimately the good of your child.  If nothing else, step outside for a daily walk (comfort food + comfy pants + no exercise = very bad).  Wait till night shift once they’ve fallen asleep and go catch a movie or dinner.  You’ll be up anyway and you’ve already watched all the recommended movies on Netflix.   It’s an exercise in trust, but it is one you need to get used to. 

 

And as far as help at home, let people help clean, cook, and have fun with your other kiddos.  Don’t let pride (yes pride) keep you from allowing others to bless you and your family.   If you’re close enough, have your children visit as much as possible and let them be proactive in their sibling’s care.

 

The length of time spent in the hospital doesn’t really matter.  I discovered on numerous occasions that day six can be way worse than day 32.  Or day 87 might not hold a candle to day 113.  There will be days you lose your patience and throw a fit worthy of a 2 year old without a nap.  That’s when you need to put a blanket over your head and try to do just that, nap!  Most everyone there understands you are a broken and exhausted momma, but a humble apology goes a long way. 

 

There will be days when you feel like you can conquer the world.  You might even find yourself enjoying decorating the hospital room for Christmas. 

 

There also comes a point when the financial burden of traveling and feeding yourself,  in addition to your regular daily living costs, becomes a burden.  Do not feel ashamed to ask for free parking, meal vouchers, or parent trays. Hospitals have programs for this sort of situation and it is there for the asking. 

 

And there will be days when you need to advocate for your child and ask everyone to just leave her alone for the day.  Don’t ever forget you are their voice. 

In your darkest moments, you might feel so far from the Lord it scares you.  But then you are reminded that He has never left.  Each new day is a miracle and you learn to rejoice in the small victories. (Yay the culture came back negative, or yay it came back positive and we finally have an answer to this fever.  Yay she pooped today, or yay he finally stopped pooping today.  Yay the cath showed improvement, or it didn’t, but yay we finally have a game plan on how to fix things.)

 

There is a greater plan behind all of it, and you finally begin to understand just how out of control of this life you actually are.  Believe it or not, you become ok with this and find relinquishing the control (you never actually had) is liberating.  Total dependence on Him.  Total.   When you are out of words and strength and hope, call out to Him.   Just say His name.   That’s all it takes. He will not leave you or forsake you.

 

It does not seem like it now, but you will get through this.  You won’t be the same, and that’s ok.  You will be the refined you.  Don’t be alarmed if you get home and you actually miss the hospital.  Kind of like Stockholm syndrome, if you will.  You’ve gotten used to the routine, the panic, the noises, and even the food.  I know it sounds crazy, but there’s something comforting in knowing it’s not all on your shoulders.  You will get over this feeling pretty quick, but you will likely have some post traumatic stress issues.  I had a hard time recognizing my feelings as such, but it’s exactly what it is. There is no unseeing the terrible things that go on in an ICU, whether it’s your child or not.  When you live in the hospital long enough, you will eventually witness/experience the rawest form of pain a parent can endure as someone’s beautiful son or daughter passes away.  And there is nothing more traumatic than seeing your child crash time and time again and being completely unable to help. 

 

To see your baby wheeled to the operating room and being utterly helpless and unsure if they will make it “this time” is not something you “just get over”.  Please talk to someone about it,  you are not alone!   As time passes the hurt dulls and you will begin to live fully again. 

 ***I hope and pray this may help someone in a similar situation.  I wrote this based on our past 126 day, multiple surgery PICU experience.   Some things I did right,  some things took me a while to realize, and some things I flat out didn’t get until it was all said and done.  (I’m still trying to work off those Reese’s Pieces from the vending machine!)

 

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This is post 9 in "The Medical Momma Toolkit: A Tips, Tricks and Encouragement Series".

 

 

 

 

 

ER Visits and Advocating for Your Child: A Guest Post by Brittan Gotbeter

I am so very grateful to have my friend, Brittan Gotbeter, guest posting for the Medical Momma Toolkit.   This amazing mom and I have become friends over the past year, as we've encouraged each other, answered questions and prayed for each other.  We've both been on a ride with our medically complex girls, and I'm grateful to have a friend who gets the bumps and the triumphs, the hard and the beautiful.  She and I have exchanged many, many messages filled with advice and questions as we've processed through this new world we've stepped into.    Brittan is brave, vulnerable and generous with her encouragement, and is loved by many in our adoption community. 

 

This amazing mom has much hard earned medical wisdom, and I really appreciate her willingness to share some of what she has learned about ER visits and advocating for your child.  She is the mom of four, and is in journeying back to China to add another son to her family. 



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I had been around the ER block a few times before we adopted Molly in 2014. Our children don’t do “easy” things, toxic ingestions, serious cases of croup and more...

Now that we have Molly home though, I do feel as if I have mastered the good ole ER visit.

In early January of 2014, my husband and I embarked on a journey around the world to adopt Molly. Molly was a 2 1/2 year old living in rural China with an unrepaired form of lipomyelomeningocele  (Spinabifida) and a club foot. We had fallen head over heals in love with her, and couldn’t get to her fast enough.  Thankfully, our process was fast and, from start to finish, we had her home in less

then eleven months.

Gotcha day couldn’t have gone any better, and we were off to a great start. We knew pretty quickly her urine smelled awful, and she was leaking urine often, but we didn’t know the full extent of what that meant for some time.  Daily in China we would bath her when she woke up because the smell was so awful.  Her diaper hadn’t leaked at night, but the smell permeated her skin. Even as a seasoned momma of three, I had never seen anything like this.

 

Once home, we hit the ground running with more testing and appointments then I knew was humanly possible. Our first stop to our beloved pediatrician told us what we suspected. Molly had a very serious and drug resistant UTI. On antibiotics we went and it cleared up. A few weeks later another and a few weeks later another, and another, and another, and another! After thorough testing and better understanding of her condition, we came to understand that Molly’s greatest area that is affected is her bowls and bladder. Molly has a neurogenic bladder and bowls, along with reflux in one of her kidneys.

 

We began catheterizing Molly every four hours during the day several months after coming home. In addition, she takes daily meds to relax her bladder and to help prevent these UTIs.  The name of the game became how do we save and protect her kidneys. Cathing is #1, but also we must act quickly when she gets a fever over 102.5. That means that no matter where we are or what we are doing when she hits 102.5, our world stops.  Literature shows that if you start antibiotics within 24 hours of fever with UTI, you can prevent long term kidney damage. Often times kids don’t throw fever with UTI, and if they do it means it’s headed to their kidneys or is already there.

Recently, we had been admitted for a high fever, very sick little girl and awful looking urine. Molly was not only brewing normal old ecoli, but also ESBL that had moved in her kidneys. ESBL is an antibiotic eating ecoli that can be very serious.

After a week in the hospital on Zoysn, she got a PICC line and we came home for 10 days of Merapinum. Shortly after her PICC line was removed, she was 104 again.   Back to the ER we went. Thankfully, we came home. A few weeks later 103, so back we went.

 

When we go to the ER now, I know what we need, and what to say.

 

“Hi, this is Molly and she is slightly complex. Molly has spina bifda and although she does great, she does have some bladder issues, was recently admitted for a week, she has a high fever and we need to get a urine culture going ASAP.”   It’s super helpful to go ahead and tell them what you can. I would also strongly urge you to go to your local children's emergency room.  If possible, try to go to the same place each time. 

 

We have gotten to know our staff there and they know Molly. Most of her records are there and it just makes life easier. This last time though, we had some issues that I want to share in hopes that it will help you when you are in this situation with your little one. Remember how I said we were there a few weeks before, after her PICC was removed? That trip was different. Her urine was clear and her PICC site was red and she was guarding it. That time we swabbed her for the flu, and when that was negative, we drew blood cultures fearing she had a serious infection.

Fast forward to our last time. I told the staff her urine was yucky and we needed to get some urine and a culture asap. That.was.all.we needed. The sweet nurse came in a few minutes later wanting to put a numbing patch on Molly for an IV and blood cultures, as well as swab her for the flu.  I kindly said I didn’t quite understand, and that we only really needed urine as I was sure her urine was infected. The nurse left and returned to say that the resident really wanted to start an IV.

 

At this juncture, I asked her if she could please send the resident in.  We had a nice chat and the resident said to me that she had looked back and this was what they had done for Molly last time. Remember, last time was a different story, a totally different situation. I thanked her for her concern and told her I would be the first to agree to any procedure that Molly truly needed, but that she was asleep on the bed and that last time we blew two veins trying to get an IV,  that she was just admitted a month ago and ended up with a PICC, had spent 40 days at Boston Children's, and that although I appreciated her concern, I try at all costs to protect her from things that she doesn’t need.

 

The urine came back awful ya’ll. Worse then in December when she was admitted. Terrible! Still though my sweet new friend really wanted to swab her for the flu and get cultures! Still, smiling(that's important), I ask her who was coming on at 11pm. Score! One of our favorite doctors who knows Molly well. As soon as she got there she came in to see us and agreed, no flu swab, and no blood cultures. After some antibiotic shots, we were thankfully able to go home that night.

The experience that night got me thinking about new parents and how much trust we put in our medical professionals. Let me say we love our doctors.  Really.love.them. Our surgeon in Boston and our team there are some of our favorite people in the world. With medically complex children we need teams around us who can communicate with us quickly and effectively. Weekdays or

weekends, our team responds when we need them. We are so thankful for the care that Molly receives in Charleston, Boston and St. Louis. Without her amazing team put together of people all over the country, our sweet Molly wouldn’t be where she is today. 

 

Doctors are human though, and each child is different. Trust that you know your child and is something is wrong, speak up!

 

Molly gave us such a run for our money in Boston, and each time I knew before anyone else. The team there grew to trust my thoughts on her condition and we moved forward together to care for her. The same goes for the ER, listen to your intuition. You know your child. If something doesn’t sit quit right, ask for an attending, get a second opinion. You are your child’s advocate, especially these medically complex ones, please don’t be afraid to share your thoughts with those doctors and nurses and tell them exactly what you and your child need.

 

I’ve also learned that whatever momma can do, the better. They need urine, and you're used to cathing your child, so it’s better for momma to do it. Blood pressure cuff on, better if momma straps it on and takes it off.  Molly doesn’t like to wear the hospital gown, no worries, they can lift her shirt to listen to her heart and lungs. Whatever you can do to help the nurses and elevate the fear for your little one, the better.

Remember always that the Lord has called you to be momma and daddy to this little treasure.  Although at times it may seem overwhelming, and like you're just barely surviving, take heart the Lord has gone before you, he has paved the way. He has and will continue to equip you to be the best parents you can for your little one.

May it be at home, school, or the ER you know your child best, please don’t be afraid to ask questions and stand your ground, with a smile on your face, when you feel like something isn’t warranted or if your child needs more.

Lastly, the one thing I always grab before heading into the ER. My car charger and a cube to plug into an outlet. ERs can be near radiology that can drain your battery quickly. Staying in touch via text and social media always helps me to feel connected to the outside world and helps to pass the time. A special lovey or blanket for your little one is a good idea as well.

Here's hoping you don’t have any ER visits in your future, but if you do, I know you are equipped and will do just fine!

 

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