Post Surgery and Spica Cast- Week 1 Recap

"Nobody can be uncheered by a balloon."

-Winnie the Pooh

I expect the recaps will wane in a few weeks, but we still have plenty to review for now.  In the meantime... our daughter has recovered well from surgery and completed her first week in a spica cast!  One down, 17 to go.  Below are our most recent thoughts:

1. Earlier posts read that Bryant's Traction was successful.  What does this mean?
Her month of traction was intended to affect last Monday's surgery.  She achieved the best possible results on Monday, as traction adequately softened and stretched her musculature for Monday's purposes.  Beyond that, traction serves no direct correlation.  She will not endure traction for any successive surgeries.

2.  What is the long-term prognosis for Hip Chick, since traction enabled her best possible outcome for her first (and hopefully only) surgery?
The answer to that question is unclear.  Because we agreed to participate in Scottish Rite's study, her hip's development and treatment will continue to be tracked for the next 15 years. They will monitor and treat her hip until her skeletal development matures, around age 17.  The research team is hoping to determine long-term outcomes for traction participants.  Since that data has yet to be developed and her future will also depend on her individual skeletal development, it is now a 15 year waiting process to see what her needs will be.

3. What is the next milestone for Hip Chick?
She has an imaging appointment one week from tomorrow.  Scottish Rite will perform a CT to check her hip.  Sometimes, children who experience a successful closed reduction still have their femur fall back out of socket.  We need to ensure this does not happen to our daughter.  If it does, she will have an open hip surgery (open reduction) scheduled soon.  If her imaging looks good, we intend for her to return to daycare the next day.

4. How has Hip Chick transitioned from traction to being casted?  Does she seem to be happier?
It is too early to say.  She is happy to sit upright and was ecstatic to leave the house for lunch yesterday.  At the same time, she has bouts of frustration with her personal mobility, as she has less independent mobility now than ever before.  Due to the extensive length of her casting, we have a long time to assess her reaction to her situation.

5.  How have we transitioned in regard to her new diapering needs?
We are excited to report one week with no leaks!  We hope to continue to achieve success in this area for her, as there is no way to fully clean diaper leaks from her cast.

6.  What is the biggest adjustment for Mommy and Daddy?
We were ready to return the traction unit.  Spica cast diapering required a steep and quick learning curve.  Now that we have a process in place, the diapering is not so bad.  We have returned to an infant diapering schedule, however, and change her around 11pm to prevent leaks.  We won't sleep a full night for the next 17 weeks.

7. How is Hip Chick's pain management?
She has weaned off her hydrocodone and is now managing pain with ibuprofen.  She is able to communicate pain with the word "ow-ee" and we gauge her comfort by her verbiage and irritability.

8. What do we hope to achieve over the next week?
We plan one or two visits to her daycare, to help reacquaint her with friends and teachers.  We ordered a custom built spica desk for her to have at each home and school and look forward to their arrival. Lastly, we will continue to take her on excursions out of the house to build her confidence and ours.

First Outing

We treated our daughter to her first outing today.  She has been sequestered in either our home or the hospital for nearly five weeks and was due a little activity.  Mommy and Daddy were thrilled!  First, we shuttled her to a nearby park to feed the ducks.  She excitedly called after them as we threw leftover bread into the pond.  We lingered until every last crumb was tossed from two old bags.

Next, we treated her to a lunch out at one of her favorite restaurants.  She was so elated to hear that we were taking her for a ride in Daddy's car that she flapped her arms enough take flight.  This lunch outing was enabled by a convenient, new Child of Mine travel booster seat that was willed to us from another hippie's mom.  Due to the wide width our hippie's legs are casted, she cannot fit into a standard restaurant high chair or booster.  You can see the product and reviews via the link here: http://www.walmart.com/ip/Child-of-Mine-Booster-Seat/20682859

In similar fashion, she cannot fit into her usual car seats with her cast.  We are fortunate in that Scottish Rite loans one seat per child in the program.  We were discharged with the car seat on Monday and used it to drive her home and to lunch today.  You can view the product and description via the link here:  http://www.spinlife.com/Snug-Seat-Hippo-Car-Seat/spec.cfm?productID=82304#.UVc0ZFdv2Zo

We returned home feeling a little refreshed by our afternoon escape and satisfied with our first jaunt out together.  Here's to gaining a little bit of normalcy back into our lives!

A Revised View of Mobility

Toddlers explore their world primarily through action.  They tend to be kinetic learners ... and are not easily deprived.  Traction altered our daughter's life in that she was confined to a fixed space, dependent on the traction device itself.  But she retained a level of independent mobility in traction.  Now, she has significantly  less independent mobility, but more freedom as to where she may travel- per others' ability to carry her there.  Consider how many adults would react to such a sudden and inexplicable prevention of movement by those we trust to protect us most.  How must a toddler feel?  As parents, it feels like the onset of traction all over again and a second infancy as we develop new processes and adapt routines.

While in traction, we did our best to reinvent and color her environment, despite its geographical limitations.  Now, we are tasked with reintegrating her into society and providing her the confidence and tools to do so without the use of her legs.  As she could require repeated surgeries throughout childhood, there is no better time than now to aid her coping abilities.

With that said...

We had been experimenting with positioning for our hippie and she was thrilled with the opportunity to lay on her tummy.  Her favorite cartoon was on tv, so I padded the couch's surroundings with bean bags and hopped into the kitchen to pull a snack together.  I returned to discover this:

There is a story about my husband as an older teenager, in which he deceives his parents and skips school to go bungee jumping.  This story immediately came to mind as my heart sped and I silently thanked my hairdresser for convincing me to hide the accelerating greys with my first dye job this month.  If narcotic-worthy pain and a body cast can't hinder her spirit at 22 months of age, just where will she go in life?  

We transitioned her to the floor, as that appeared to be her aim.  Soon, we made her a tad angry by swiping her beloved pillow and placing it out of reach.  Fueled by emotion, she wiggled and clawed her way to obtain it.  For evolution fans out there, we pondered whether this is what the first creatures to emerge from the sea and pull onto dry land looked like.  But it answered our question- she can move and we can inspire her to move.  Give her a week or two, and I anticipate she will be quite the handful.

Speaking of such things, curiosity led me to pull out Big Sister's rocking bee.  She received this as a gift several years ago and I was curious as to how Hip Chick would respond.  It has turned out to be a remarkable assistance, as she is happy to rock in the chair while watching tv.

After a frustrating morning, two thoughtful deliveries brought some cheer.  

She immediately requested the elephant cookie  ("pees!") and she indulged in part of it.  How could Mommy say no?

Mommy needed to return to the office today and felt guilty for doing so.  The photo above is how I left her this morning.  Daddy earns high honors for mastering diaper changes with no leaks or spills today.  We have developed a good routine.  Also, I am pleased to report that all dresses I had selected for the spica phase seem to work this far- most of them in a size 2!  We have learned that loose dresses, with a stretchy bodice or no waist at all most easily accommodate her cast.

Spica Cast and Diapering- Everything You (Never) Wanted to Know

This post is for anyone looking to manage an older toddler's spica cast and diapering, or those just curious.  As you can see in the photo above, her cast extends up most of her back.  We were thrilled to see it did not reach her armptits, as we were first advised it would.

It is supposed to have enough space for us to insert a hand at the top.  Our daughter's cast adds far more than the inch or two we were expecting.  I measured her "waistline" and it is six inches larger than before surgery.  I measured her legs' width and her knees measure 20 inches apart, with her toes there is an approx 27 inch spread.  She is casted in a rather low seated position, with her rump no more than seven inches from the floor in a true "standing" position.  It adds over 10lbs to her weight and, as with all casts, cannot get wet.

The casting around her ankles should have enough space for us to insert a finger. The edges of her cast, top and bottom, are lined with this thin, fuzzy material.  This material also lines the diapering area... just imagine the potential to harbor soiling without an appropriate waterproof barrier.  I shudder.  Onto diapering...

First, a very wise person recommended I trim the tabs off of all the diapers I plan to tuck inside the cast.  This has made a big difference in how the diaper tucks, not to mention it is more comfortable for our daughter.

Then, we take a menstrual pad which has been cut in half.  I was previously advised to use Equate incontinence pads, but they only work if you do not need to trim them.  Our daughter's diaper opening is surprisingly narrow and short and we have to trim her padding  Snip one Equate pad in half, and you subject yourself to a super messy, jelly filled diapering center.  Learn from my experience- do not do this to yourself.  Scottish Rite used Kotex type pads, but we have had a lot of success with the Always Maxi, overnight extra heavy flow pads.

Next, insert the pad into the diaper.  I recommend facing the cut edge toward the diaper's center.  Leave enough room at the top of the diaper for tucking.

Now, we slip the diaper under the cast, between the cast and a larger diaper.  We were originally advised that Scottish Rite would use a size one, but they opted for a larger diaper due to our hippie's age and size.  We used size twos in the hospital, but she was not eating much and somewhat constipated due to the narcotics.  I began using size threes at home.  She usually wears size four.

It is time to begin tucking...

And tucking..

And here is a neat front tuck.  You also have a good view of the Duck Tape we used.  Can you imagine fuzzy liner here?  I am very pleased we followed our peer advisement to bring duct tape to the surgery appointment.

(Note:  Scottish Rite has since banned the use of duct tape, as it has latex.  Other latex-free, waterproof tape is provided by the hospital.)

Now turn over... back side must also be tucked!

I always begin tucking on the sides.  It seems to work easier this way.

And now we have a rear tuck with a little poofiness, to allow room for diaper contents.  But wait- we are unfinished.

I prefer to finish the diapering with an oversized diaper on the outside of her cast.  When she first returned from the OR and recovery, she had a very wet diaper, which was hanging a bit from the cast.  I have found that adding the outer layer prevents such unsightly and leak-prone situations.

Discharged- Home

After a tough first night in her cast, Hip Chick was discharged home yesterday.  She awoke at 10pm and was awake most of her first night in the cast, which made for an exhausting second day.  A medical professional can no longer  draw near her without evoking wails and shreiks, so we hoped that transferring home would mellow her disposition.  Her favorite activity at Scottish Rite was to be carried for walks by Mommy and Daddy- especially to study an aquarium or the gorgeous carousel horse pictured above.  Her cast adds a significant amount of weight, however, and we could not carry her for lengthy periods of time.  We hope(d) to find better ways to entertain her at home.

We were able to make her comfortable rather quickly with a handful of pillows and a couch.  We /she experimented with positions during the rest of the day.

Naptime...

Bean bag trial #1...

Bean bag trial #2...

Tinkerbell couch...

Dinnertime was difficult.  It will take a bit of trial to find a good position for her. 

In other news, Mommy is proud to report 48 hrs of successful diapering.  Learning to diaper a child in a spica cast takes a little creativity.  I held my breath during the first few poopy changes, fretting that I would discover leaks or smear the cast.  Now that I have a little confidence, it is time to teach Daddy.

Pain management is also of primary concern for now.  She was on morphine her first day and transitioned to hydrocodone yesterday.  We can alternate with ibuprofin.  This morning, she awoke with cries of "oww-eee" and so I anticipate that mornings will be tough for her first several days.

Lastly, I see that clothing will also take some creativity.  The dress pictured above is a size 2.  The pajama shirt she wore in the hospital was a size 4.  Last night, she slept in one of her big sister's tshirts, which was a size 8.  We will have to pay close attention to brand and design more than pure sizing.  As I suspected, the dress above offered far more roominess than the more fitted shirts and allowed us to stay nearer to her true size.

Traction Success and Closed Reduction

Hip Chick had a big day today... and an encouraging one!  It began very early and she ensured her clinicians earned every penny, as she was full of fight.  Everyone at Scottish Rite has learned that our hippie goes down swinging.

The morning sped by.  Vitals, a blood draw, an xray (actually, two- due to the aforementioned "fight"), and she was ready for a "goofy juice" ride to spicaville.  As soon as she stopped spewing venom at anyone sporting a labcoat and began cooing the balloons overhead, they lovingly carried her to the OR.  We received the pager above and nerviously busied ourselves with breakfast.  

Two hours later, we received her surgeon's page with grand anticipation.  A quick elevator ride upstairs and he met us in the hallway to deliver the news we had hoped for:  he was able to set the femur in place via the groin surgery and the closed reduction.  I bluntly asked him if this meant that her month of Bryant's traction was successful.  He advised that yes, traction was successful for the purposes of today's surgery and outcomes.  It softened her musculature enough that he did not need to open her hip to set her femur in place.

In other words:  WE DID IT!!

She had both a CT and an xray at 2pm this afternoon to ensure her femur remained in socket after casting.  So far, it is in place.  She will have an additional CT in two weeks to reverify.  Then, she will have an OR appointment every six weeks for 18 weeks.  She will require anesthesia for recasting and new imaging.  If her hip is found to have slipped out of place at one of her appointments, she will have to undergo the open reduction this spring or summer.  We have been informed that reshaping of the pelvic bone could be a possibility with a future open reduction, as well as a femur reduction.  And her surgeon advised that, should the hip take but her growth pattern remain inadequate, we could do a hip surgery again in one to two years.  Of course, there will continue to be a possibility of additional surgery until her skeletal development is complete.

So, our daughter still has a long road ahead, but we have a big milestone to celebrate today.

This evening, students from North Dallas High School volunteered at Scottish Rite, to provide a craft night.  I decided that our hippie was due some cheer and wheeled her upstairs.  A 10th grade girl eagerly offered to play with us and we took a seat.

We scribbled with markers and made macaroni art.  I padded my lap with pillows so she could sit in my lap and roll a ball with our playmate.  I held her next to a Little Tykes basketball net and let her slam dunk to her heart's content.

I returned upstairs with a very tired little girl tonight.  She wanted to sleep on my shoulders and I could not refuse.  A kind nurse finally helped me move her to the bed, which has enough room for us two to sleep together.

Here's to a positive end to the first month of her journey.  I hope each new day continues to bring her improvement.

Surgery Update

Traction successful!  Closed reduction completed and our daughter is recovering.  More news later.

Surgery- Closed/Open Reduction

The time has arrived for our daughter's surgery.  We are just as nervous as any other loving parent would be.  Surgery and anesthesia carry risks, which no caring parent would wish upon their child.  We have done our best with what was within our control and must have faith in her surgeon's hands and decisions tomorrow.

This weekend has centered on lagging preparations and comfort measures.  Shopping is complete and a hospital bag is packed with supplies for Hip Chick and me.  Scottish Rite allows only one parent to stay overnight with each child, so I will sleep at the hospital.  Current plan is for a two day stay.  Should the best of best case scenarios occur, she may discharge tomorrow evening.  Should the surgery take a more serious turn than hoped, however, her stay could extend.  We are packed for up to a three day admission.

We are fortunate in that we live within a reasonable driving distance of Scottish Rite.  For families who live further away, there are lodging resources, such as the Ronald McDonald house, and nearby hotels.  Scottish Rite also has an on site cafe and a laundry center for parents to use (bring your own detergent).  I ensured to tuck extra cash in my purse, should I need a late night vending machine visit to nurse insomnia.

Scottish Rite requests that siblings and other young relatives or friends remain at home.  My husband and I will be the only two allowed in the day surgery area when we admit around 5am tomorrow.  She will be given "goofy juice" to enable a low stress transfer to the operating room around 7:30am.  Her surgery will be no shorter than 1.5 hrs and, of course, time will compound if they must transition to the open hip surgery.  Adult visitors will be allowed sometime after she transfers out of the OR and awakes from anesthesia.

Today we have been playing with the Care Bear pictured above.  With a bandage on his knee and thumping heart, he speaks about going to the doctor when you squeeze his limbs or give him a hug.  Yesterday, she demanded that we remove Purple Teddy's leg bandages (see my Sunshiny Day post for prior reference), so the Care Bear is her current sympathizer.  As when I prepared her for her taping, I have been showing her photos of young children in spica casts today.  There are a wealth of images to draw from via the link here:  https://www.google.com/search?q=toddler+spica+cast+photos&hl=en&client=firefox-a&hs=zOo&rls=org.mozilla:en-US:official&channel=fflb&tbm=isch&tbo=u&source=univ&sa=X&ei=1R1PUYLKO6zyyAHAmYGIAQ&ved=0CC4QsAQ&biw=1366&bih=598

I found the following links easiest to show her:
https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJlPw9AlaunOEJUR2XxUFLF6DdAmwXXGH-r9hoRSMoHO2mmOKVbEks3OAf5x1WfAnGWpCo8VJSOzAdLvSyYHkuG491UKrEoKEactAiayocmwWwYXm-vEXNj5fVoh_s3SgHctCf8rKRR9pn/s1600/lastcast.jpg
https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9GwPmddI3x0Kn7nCX9rj7VjboPN5CdZBohCM0vG7K7kBoeT1__TalXznrAC2fR7oyfHdeMLiS0i3AkfDsZqfATdlMftYJAL5ndVZeE75k8_f1aCmqxKf4rQ0moWY4crmaVhEikEtetMA/s1600/new+pink+spica.JPG

Hopefully, as with the taping, she receives the images with some level of understanding. 

I had wanted to treat our hippie to a picnic this weekend, but weather thwarted my plans.  Instead, I focused on comfort.  Each person has their own catharsis and long before I took up blogging, I have emoted through cooking.  So, I indulged in a bit of meaningful meal planning.  Call it superstition.  Call it silly.  Call it juvenile.  Perhaps I watched the movie Like Water for Chocolate once too many during my young adulthood.  But parents do funny things when they cannot shield their children from adversity.

Last night, I served our family's favorite meatballs.  I used bison and turkey meats, combined with fresh garlic and plenty of herbs, and served them with a florentine sauce.  I served buffalo in hopes that she will be strong and the herbs, garlic, and vegetables to wish her health.

This morning, I pulled together the cinnamon blueberry oatmeal bake pictured above.  The first time she returned home from daycare with a nasty bite from a classmate, I made this recipe.  I served it to her this morning in hopes that her pain will not be too great.

For lunch, she will indulge in her favorite meal- macaroni and cheese.  I always stir in steamed vegetables for a nutritional kick, but today's mac & cheese is in hopes that she will easily find comfort.

My next blog will be post surgery.  I hope there is positive news to share and celebrate!

Spica Diapering and Pajama Time

Welcome to our bevy of new diapering supplies.  Spica cast care is not as simple as having a child in a cast- proper diaper care will be essential to avoiding skin breakdown or a perpetual litterbox smell.  We collected supplies today to bring to her surgery.

First on the list was duck tape.  Yes, you read that correctly.  Our hippie's cast will extend from her armpits to her ankles, with an opening for her diapering areas.  The cast edges will need to be "petaled" with strong, waterproof tape to prevent chafing or cast soiling.  The petals will not need changing very often.  I was advised that duck tape is better than the stock tape Scottish Rite provides- plus, I can select my color of choice (Scottish Rite uses grey tape) and bring it to her surgery.  I was directed to check Wal-Mart and, as you can see in the photo above, there are some wild colors available.  They were out of solid pink, so I opted for two patterns- a butterfly pattern not pictured above and the polka dots.

Second on the list was incontinence pads.  I was advised that Equate works better than Poise for spica purposes.  We will need to line the edges of her diapering area with the pads to help dam urine and stool.  We will not have the ability to fully clean diaper leaks off the cast and these pads are a preventative measure.

Third on the list was multiple sizes of diapers.  We will need to use a size or two smaller than usual to tuck between the Equate pads and cast.  Then, we will need a size or two larger than usual to secure over the cast and keep everything tucked in and tidy.  I had considered a purchase of reusable diapers, which look like bloomers, for the outer layer.  I was a bit skeptical of the waistband on the reusable diapers and opted to wait until she is casted to measure.  

Fourth on the list was extra baking soda and a toothbrush.  Should we have to treat diaper leaks (I shudder), I read on another hippie's blog that baking soda is the best tool to approach stains and stench.  

After diapering supplies, pajamas were the next   order of business.  Her cast may add one or two clothing sizes.  Wal-Mart just happened to have spring pajamas with two of her favorite characters, so I purchased them two sizes larger than usual.  We were advised that she is welcome to wear a hospital gown while admitted, but some parents bring clothes.  I hope these pajamas bring her a bit of sunshine as she adjusts to life in her cast.

Bryant's Traction- Final Recap

Our daughter has completed her month of traction.  Mommy and Daddy are thrilled with her accomplishment!  Her taping appointment already feels like a distant memory.  The photo above was snapped immediately after her legs were taped, during her test drive through Scottish Rite.  As we prepare for her surgery this coming Monday and subsequent spica cast care, below are our closing traction thoughts:

1. Hip Chick seemed to have a rough third week, how was her disposition for the last week of traction?

In regard to emotional maintenance, her third week was the most difficult.  She has been fighting us more on trying to walk this last week- which is understandable. Overall, she remains in decent spirits for her situation.

2. What has been the most surprising aspect of her traction process?

We have been most surprised at her ability to sleep soundly.  She has both napped and slept overnight while attached to the unit every day since we brought the traction unit home.  We had anticipated this would be our largest battle, but could not have been more wrong.

3. How has the traction phase affected her developmental progression?

Our 22 month old daughter's vocabulary has exploded.  She already held an expanded vocabulary prior to traction.  Now that she must rely on speech as her primary interactive tool, she seems to have jumped months ahead in regard to how she utilizes it.  She has begun bargaining to "sit right there a minute" in attempt to be placed onto the couch instead of back into the traction unit, for example.  

4. What advice do we have for parents of older toddlers who need Bryant's Traction for developmental dysplasia of the hip?

•Rotate, rotate, rotate activities.  

•Hide new toys and gifts in the weeks leading up to traction so you have a reservoir of distraction aides for difficult moments.

•Creativity is key.

•Now is the time to indulge children's tv programming and animated films.

•A beloved and empathetic sibling is the best aid.  

•As parents, plan to spend extensive one-on-one time with your child on the floor, sitting on the traction mat if necessary.  

•An oversized bean bag is a parent's best friend.

•Use the wagon and take your child outside.  

•For mealtimes, leave your child attached to the unit until the meal is ready to eat.  This minimizes time out of the unit.

•Plan for easy to prepare, low fuss meals.  Order in and accept offers to bring you food.  Now is not the time to be an Iron Chef.

•This age is mischievious and curious and so requires heavy monitoring while in the unit.

•Buy dry shampoo- especially if you are preparing for traction and spica casting.

•Your child will adopt no more of a cheery disposition than you model for them.  

•Emotional lows and bouts of frustration are to be expected. It is our job as parents to maintain composure, not theirs.

Last and most important:

You have one shot to get this right for your child.  Give it your all and hope for the best.

A Little Help From My Friends

Our daughter's final week of traction is drawing to an end, with a few extra helpers to acknowledge.  

1. Finding Nemo earns top honors this week.  Just keep swimming...

2. To accompany our undersea movie adventures... Play Doh molds.  Mommy may have been just as excited about these as Hip Chick.

3. This lap desk continues to be one of the best purchases for the traction phase- hands down. Who can resist such a sparkly work space?

4. The Usborne Big Drawing Book- We can stamp, sticker, draw, and color on a plethora of backgrounds.  Penguin swim?  Got it.  African Savannah?  You bet.  It was a perfect medium to exercise our...

5. Darling Melissa & Doug stamp set and...

6. Crayola Mini Stampers Markers.  Washable pink hearts?  Yes, please!  Of course, there is no better excuse to stamp pink hearts than...

7. Our Melissa & Doug Jumbo Princess & Fairy Coloring Pad.  Big Sis loves princesses and Little Sis loves fairies.  Quibble no more, my children!

8. One Little Blueberry- Hip Chick has learned how to count to 10.  Each time I rewrap her legs, we count the rotations together.  We have expanded our counting to this colorful book of bugs looking for a meal.

9. Squeezable oatmeal packs- We can attempt to eat Shredded Mini Wheats and Rice Krispies with a fork only so many times before Mommy and Daddy seek alternatives.

10. Lastly, an expansive "thank you" to all of the loved ones who cheered us on this past month (you know who you are!).  We still have many months ahead to complete her current plan, but are excited to put this first phase behind us.  Your calls, emails, texts, prayers, and thoughtful gifts aided our household in achieving our hippie's best outcome, whatever that may be.