Her 2nd Limb Lengthening

It's early winter of 2019.  Katelyn has had such a wonderful 2.5 years from her last lengthening. She did have a small outpatient surgery last year to remove the screw in her 8 plate but it was fairly simple in terms of surgeries.  I'm so thankful that we've had very little procedures since she was born.  I think this is surgery number 5 in the 6 years of her life and while that does sound like a lot quite a few of them are grouped together so there are many years in between where her FH doesn't come into affect her life.  When she was born and we were given the really difficult choice as to keep her leg or amputate, some of the agony that we had was if we would be subjecting her to a childhood of surgeries if we chose to keep her natural leg.  If you are a new parent of a child with FH that has just found this blog online I can tell you that so far, (albeit we're only 6 years into this) it's been worth it to keep her leg.  The length difference doesn't set her back at all and she's really grown to love her little leg.  There's never been any anxst over her difference until this point and I don't regret for a moment keeping her leg.

Skiing All Day- Age 6- 10.5cm difference 

Nothing Stops Her!

Which brings us to today.  Next week, Wednesday, January 30th, Katelyn is set for her next leg lengthening. This time it's on her femur (thigh bone) as that bone is also short.  It wasn't short at birth but has progressed to a point that it needs intervention.  Here is a recent x-ray.  She's not standing on a block that is the full height of her discrepancy but if she were you could see plainly that her left femur is shorter than her right.  The valgus knee positioning (knock knee) has returned which is disappointing but all part of dealing with a progressive condition. The 8 plate that is in her knee now will be screwed down again during the lengthening surgery which will push her knee out to a straighter alignment as she grows.  This will also give her a little bit of added length as the bones come back into proper alignment.

At it's basic form, this lengthening is the same principle as her first lengthening.  During surgery the doctor does a horizontal cut in the bone and through a series of weeks and bedrest the bone is separated multiple times a day and the body continues to regenerate marrow in the gap that is created.

But how is the gap created in her bone?

The process and technology has advanced in just a few short years and now looks a bit different.

 *If you are new to our lives within the past few years I'd suggest you look up her first lengthening on the blog so that you will understand some of the technical terms.*

In order to avoid the use of the external fixator (because it had serious downsides, open wounds, heavy medications involved, scars, emotional trauma etc) new technology was developed over the last few years to do the bone lengthening from inside of the bone itself.  Or the creation of an internal fixator.  A small rod was invented to be placed inside the bone and then through an external receiver the rod is activated  and it expands, thus opening the break that was created in surgery.  The body then regenerates marrow in the gap that the rod keeps creating.  This procedure has only been limited to patients who are almost fully grown as their growth plate is damaged when the rod is implanted. This is where our doctor is willing to take it a step further.  With the consent of the parents he implants the rod alongside of the bone with it being screwed into the top and bottom of the femur so that it doesn't damage the growth plate.  And it's actually working!  The doc in Minnesota has done it 15 times and the doc here has done it twice.  Katelyn will be the 3rd patient for the Ohio doctor to receive this type of implant at such a young age.  Here's a peek inside the little leg during lengthening.

This x-ray was taken towards the end of lengthening and you can see the new growth being formed in between the expanded break.  The best part is this is all inside of the leg so there is no external fixator or cage with screws that need to be turned etc. in order to open the break. It all happens inside of her body with the help of the parents who use the activator to communicate with the rod.  Every 2 hours for 30 days, during waking hours.  We'll also be doing physical therapy at home and in the office to stretch the soft tissue as it is not lengthened surgically, so it just has to stretch to meet the new growth.  After the 30 days of lengthening comes the consolidation phase (bone hardening) in which there is very little weightbearing.  I believe this phase is 8 weeks...and weightbearing is increased by increments as well as re-learning to walk.  It's a long marathon but our hope is that if we start this process now she'll be back to normal by spring and ready for full play outside once the weather has turned and school is out in May.

She's handing this all in stride.  She is fully aware of this surgery  as it was too big of a process not make her aware.  Last week was her last gymnastics class which she loved and we'll see if she wants to return next fall.  Most of what she loved about gymnastics was time with her cousins but if she wants to return in the fall we'll support that fully.

Triplet cousins at gymnastics

We're hoping to have her return to school in 4-5 weeks once the every 2 hour care is over and she's comfortable moving about in a wheelchair.  Here's a quick clip of how she told her class.  The whole presentation was about a 15 minutes on why her leg is little and why she'll be gone for a few weeks.  I'm so grateful that at this age they are so loving and accepting.  Their biggest concern was who will get to deliver her mail at home and who will get to push her wheelchair when she returns.  Gotta love this 1st grade class and a wonderful teacher who God knew she needed this year.  It's such a huge testament to how God works even through the smallest details of our lives.  

And that's all for now.  There will be the removal of the hardware one day too.  It will come either when her body tells us it needs to go or at best next year if we are lucky.  One hurdle at a time though. For now we're concentrating on growing this little leg and the days ahead.  

Her First Limb Lengthening

Wow.  Time flies.  If feels like not too long ago she was born, then a surgery at 9 months, and now here she is 4 years old and the doctor has said she’s ready for her first leg lengthening. It also feels like not long ago we were in his office with a newborn being given the choice of amputation or to undergo lengthening of her leg in the future.   But the actual lengthening part of treatment wouldn’t be until age 4 so it was manageable to put off emotionally.  There was still time.  But here we are.  She's 4 now and the doctor feels it's a good time to intervene with limb lengthening.  So here’s the plan for what lies ahead in the near future.

On Tuesday the 26^th of July we’ll fly to MN.  We’re bringing the whole family. 

*A moment about bringing the siblings…  We’ve put much thought into whether or not we would bring the siblings with us or leave them at home with family.  For her first surgery (at 9 months) we didn’t bring them and it was nice actually.  She was young and we could focus on her and we were only gone for 6 days.  But now she’s older and lengthening is a much longer process.  Sure it would probably be easier to only have to focus on her and then we wouldn’t have to buy six flights and accommodate 6 people for a few weeks but we ultimately decided that the older siblings can be at times her source of energy, strength, joy and distraction which is much more important than the cost of plane tickets.  They bring a lot of direct value to the table when it comes to her emotional care.  Also, at this point they know more about what she’s going to go through than she does and it affects them greatly.  So the decision to bring them was more about the family as a whole and having us walk this road together, not leaving any of us in the dark for better or for worse (or richer or poorer).  We are a family.  We will get through this together.*  

The afternoon of Tuesday the 26^th we will meet with the doctor and review his plans.  We’re planning on heading to Mankato shortly after to drop the big kids off and to visit with some good friends.

Wednesday at 7am we’re due into the hospital.  Surgery is at 8:30am.  It takes a few hours I believe.  During this surgery the tibia bone is cut horizontally and a fixator is placed on her leg which has between 13 or so pins that go from the outside metal frame, through the skin and are screwed into her tibia bone on either side of the bone break.   Up until recently the process of lengthening a limb was that the parents would daily use a key to turn the struts of the fixator so that it would slowly pull the break in the bone apart.  However, Katelyn is going to have a slightly newer technology where 2 motors are placed on the fixator and the motor will make the turns up to 300 times in a day in lieu of the parents turning.  It’s so fractional of a turn that it’s supposed to be less painful.  We really hope so.  The body then treats this like a continual break of the leg and manufactures new bone growth in between the opening.

If you’ve read this blog in the past you might remember a special little girl Lillian that is a kindred spirit of sorts with Katelyn.   Lillian was also born in Minnesota around the same year and is a mirror opposite of Katelyn having FH in her right leg and Katelyn has FH in her left. Lillian has already gone through lengthening and her mom has graciously let me borrow some pics to show you.

This is sweet Lillian.  She’s wearing the fixator with a cover over it so you can’t see the fixator but you can see how wide it is compared to her leg.  This is why all of Katelyn’s clothes have to be altered.  Underwear, shorts, pants etc… all have to be able to be opened from the side and snapped on because nothing can fit over top of the fixator.  Thankfully a sweet woman from our church has offered to help with sewing everything.  I’m not a seamstress!  God sure worked that detail out for me.

This is Lillian sporting the fixator.  Yes, I understand it's hard to look at, I've been looking at these kiddos for 4 years now and it's still hard to look at.  It's why she'll be on lots of pain meds.  Pain killers, muscle relaxers, meds to keep her stomach from getting upset from the meds, stool softeners, nutrition supplements because it's such a long time to not feel well from all of the meds and more.  Kind of makes me look sideways when I hear people talk down about Tylenol.  Silly parents, bless you though. I can't wait for my girl to be on just Tylenol! We'll get there.

This is Joseph.  Such a cute young man.  He’s just finishing up lengthening by now, but during the spring when we went to MN he was visiting the doctor as well and we got to see his fixator up close.  He has the newer frame with the motors. You can see the motor down at the bottom.

Lillian's face cracks me up! They were all into taking pics.

In addition to having limb lengthening Katelyn is also having knee surgery at the same time.  The doctor is inserting an 8 plate into her knee to help with some valgus knee issues.  The valgus knee (knock knee) wasn’t present at birth but it’s a part of the progression and it’s appearing.  The limb lengthening will put pressure on the joints above (knee) and below (ankle) and the 8 plate will help combat that and straighten the knee at the same time.  I have no idea when they take the 8 plate out.  It seems I zoned out when the doc was explaining that part.  I think I was stunned when he said “if now’s a great time for you family I think she’s ready for lengthening.”

Anyhow back to the schedule.  Katelyn will be hospitalized for a few days and then we’ll move down to a home on Madison Lake.  I cannot tell you how God is in the details of this surgery and planning.  Every detail from beginning to end God has basically put in front of us saying “follow me I’ve got this” and finding this place was all a part of His plan.  We are so grateful to this generous family.  Your kindness is beyond measure!

We were given two options with this treatment.  Either reside in MN for 40 days while the fixator is on or commit to traveling back and forth every two weeks.  So with work schedules and life schedules we agreed on a compromise.  We’d stay for the first two weeks to be monitored and then begin traveling back and forth.  In the off week when we are in Columbus we’ll be seen by an orthopedic doc here at our Children’s Hospital.  He’ll take pics and x-rays and relay them back to Dr. Dahl.  Then on the even week we’ll travel to MN to visit Dr. Dahl in person.  This schedule will continue until September or until her body says it’s time to stop the lengthening.  The part about the body saying “I’ve had enough” I don’t even want to talk about.  We don’t want her body to fight against the limb lengthening, so for my prayer warriors please pray that her body is totally flexible and is accepting of all of the stretching and pulling on muscles, tendons, blood vessels etc..

At the end of the lengthening (whenever that is) we’ll return for the removal surgery.  He’ll place a plate alongside of the new growth that will help stabilize it during the consolidation phase.  Thus the term Plate Assisted Lengthening.  Other docs across the country have the kids wear the fixators for 4-6 or more months but with the plate assisting, the fixator can come off at the end of the bone growth stage which is around 40 days.  One of the reasons we loved this doctor was because of this reason alone.  Each one of those pin sites is an open wound and needs cared for and monitored for infection.  So the faster you get the fixator off (in our eyes) the better.

During the consolidation phase she’ll be casted or in a boot.  We haven’t really reviewed the details for when we need to return to make visits then once she’s casted so that part will just have to be an unknown until later.

And that’s it for now.  A lot to digest.  I know.  I’ve had 4 years to accept this process and it’s still hard.  One thing is for sure though I know that she was created by God who is so much bigger than us all and she was created by him for a reason and with intent.   He created her with a purpose just like He created you and me with a purpose.  We all are on a journey of some sort and none of us have an easy one at that.  What I keep clinging to is that even though we’re about to enter a more difficult stage of her journey God will be right there with us.  He’s always working upstream for us making a way, laying out the details for our lives to unfold.  All he asks is that we trust his plan.  Sometimes trust is the only thing we have left to do.

TRUST in the Lord with ALL OF YOUR HEART and do no lean on your own understanding.

Proverbs 3:5

Spring 2015 Update

Wow I can't believe it's been almost 2 years since I've posted.  Well...actually I can.  We've had it pretty smooth for the last 2 years.  She's growing and no surgeries have been needed.  On the 11th and 12th of May we went out to Minnesota for her annual update.  It was a long and informative visit.  We do so much in 24 hours; it's exhausting.

Monday morning in Ohio we put the 3 older kids on the bus to school, took two planes and arrived in MN by 2pm.  That night we had scheduled a meet up with 2 other kids who are around Katelyn's age and they have FH just like Katelyn.  That's where we met Lilian.  You see kids with FH generally have 1 thing in common, they're missing their fibula bone.  However, there is a huge spectrum of other complexities that kids can have right along with FH.  For example with Katelyn she has 3 toes on her little foot, she's missing her ACL and PCL in her knee and so on.  But Lilian, her little details are just like Katelyn's which made this visit (and discovery) so special.  Lilian is about 3 months younger than Katelyn and her LLD (leg length discrepancy) is the same, she has 3 toes on her little foot and her walk even looks the same.  They look like FH twins!

Lillian (on the left) is a mirror image of Katelyn. Bigger legs bent in the back, smaller legs in the front

Smaller legs on the outside, bigger legs on the inside

It was so nice to be with other parents of FH kids and to share our joys and fears, as well as to laugh and cry together. It can be so lonely being the parents of a 1 in 40,000 child that it's nice to just be with someone who uniquely understands your feelings and can identify with you.

The next morning we went to the clinic in the hospital.  We always get a height and weight measurement taken and a series of x-rays updated.  In the lobby Katelyn got to play with a therapy dog, make a door knob craft and play in a play area.

Every patient got a goodie bag on this day.

Crafts

Lucy the playful puppy.

It was nice to visit with the doctor.  We had been preparing ourselves for him to say she needs a surgery of some sort because we know they are inevitable and he spent some time talking about possible ones that she could need, but then he made the point that for various reasons she doesn't need any surgery at the moment.  Her range of motion in her ankle is improving.  It's not great but it is getting better. She's walking just fine despite her growing difference in leg lengths.  We're up now to 8.5cm difference.  The biggest change we discovered was the discrepancy in her femur bone is growing.  For many appointments it stayed at 1cm shorter than the right side but it's within this last year that I've noticed her knees are not lining up evenly anymore.  The femurs alone are up to a full 2cm difference now.  Actually I've noticed that the whole left side from her hip down is just more petite.  I think for the longest time I tried to compartmentalize this birth difference into thinking it would just affect her from the knee down, however, time has shown that she's just smaller in her whole left leg entirely.  The x-ray did show though that the hip joints are equal in size for now so that's good.

Image from 2013 she was about 1yr. You can see knees are almost even.

Image from Monday. Shortened femur is noticed and smaller left side.

Lastly, we spoke about her leg lengthening surgery, since that's the big one that she'll undergo a few times in her childhood.  Our doctor (different viewpoint than some of the other specialists) really isn't comfortable with lengthening more than 15-20% of the total bone length at one time because of the potential damage it can cause on the joints on either end.  So, while she's so small we've all agreed that we'd rather wait until we can get some significant length when she's older.  We also talked about some new technology being invented.  I love that while Dr. Dahl is older and more experienced he's really still abreast of new technology coming and passionate about his field of expertise.  He's working on some new inventions and if all goes well Katelyn will be in a clinical trial for internal lengthening of her femur bone within the next year or so.  There is still so much to be learned but for now we're content with waiting, both for technology and growth.  I'm also so pleased that Dr. Dahl is very patient in moving forward with surgery.  He realizes that the whole team has to be ready: the child, the parents, and the doctor. 

When you give a toddler your phone to play on and she decides to take pics of all of the
 grown-ups talking. Mom and Dr. Dahl.

For now though it's life as usual. We're having a phone conference in January to see how the clinical trial is progressing and then coming back next spring for a face to face visit.  If anything this journey has taught me to just appreciate today.  It's easy for me to get overwhelmed with what possibilities the future holds, but since we've been given this year pass I'm choosing to enjoy today and let God sort the details out for the future.  After all, He's the one with the ultimate plan for our lives anyways.

One Year Ago Today

My Precious Katelyn-

On this day one year ago I lay still, on a hospital bed in the operating room.  You were just taken from my womb, the sound of your first cry was precious...and God was there.  They laid you on my chest, I saw your sweet face, I’d waited for you, the whole family had waited for you, and you were finally here.  The nurse showed me your foot, your special little leg, I wasn't concerned, you were perfect, you are perfect and wonderfully made...and God was there. I only got to be with you for what seemed like a few moments until you needed to leave.  You were struggling for air.  It was hard but I knew, Dad knew, you needed to go to a better hospital.  Watching, listening, seeing flight crew in flight suits as they strapped you into that helicopter incubator, saying goodbye. Tears were streaming.  Dad leaving me to go be by your side. But God was still there.  Being alone on the maternity floor.  Listening to all the babies come out of the nursery at night being delivered to their moms. Pumping milk for a baby who wasn’t with me.  It’s only just now that I can see God wasn’t only with me in those moments, he was carrying me.  God was with you in your hospital room too.  Urgent flights for family arriving overnight to take care of your siblings. Being reunited in the NICU of a Children’s Hospital, sobbing, lots of tubes.  Explaining the situation to your brother and sisters, Kelsey needed extra time to process; it just wasn’t how we had planned.  God had a plan all along though.  He always does.  Always.  Your siblings jumped at the chance to travel and see you, they love you so.  Spending hours by your hospital bassinet. Praying. Hope slowly emerging with every breath that was beginning to slow down to normal rates.  You began to nurse, finally.  Going home.  It felt so good.  1 day had turned into 5 days and it seemed like an eternity in the hospital.  Finally a moment to celebrate, you were home, with us, a promise of health was all that mattered. We were elated...and God was there.

To the world you are only one person, but to one person, you are the world.

The days to come would be challenging for us as parents as we learned we were faced with a really big decision for you.  But I guess parenting always comes with big decisions.  God doesn’t promise us an easy life, but he does promise hope and comfort and a peace from knowing that his master plan is at work and we get to be a part of that plan.  You Katelyn, are a part of his plan.  We spent time researching, talking, praying, speaking with doctors and trying to process the path before us.  Either road would be tough for the whole family but we knew God would be there. 

 

I have commanded you to be strong and brave.  Don’t ever be afraid or discouraged! I am the Lord your God, and I will be there to help you wherever you go.  Joshua 1:9

During this first year we watched you grow, you are a mama's girl now but apart from me you are also in love with your Daddy and siblings.  Your love for them shows so much when you yell out to get their attention as they pass by.  With Brayden you love to play with him in your own little "rough house" kind of way.  He lets you pull his hair and smack him and you squeal with joy as he yelps in pain.  You both love it actually.  With Kelsey, you love her attention.  You enjoy playing beside her if she'll let you get close enough to her horses.  With Allyson the bond that you both have is something special.  She has loved you since before you were born and takes care of you just as I would.  She carries you around the house and loves to play with you every day.  Out of all of the kids she held you the most those long days in the hospital.  She would have been right by your side all night if she could.  You don't know it yet but she's soon to be your best friend and sister all in one. With your Dad you have a special bond as well.  I love the way when he holds you, you always reach up to feel his rough scratchy face.  Dads are something else with their little girls and let me tell you he loves you like crazy too. 

This year has brought us so many joys.  From you learning to smile, clap, and say Da-da, your cute little belly laughs, to army crawling and even pulling up using just one leg to balance yourself.  You’ve grown so much.  And now that your first surgery is over we are beginning to see you bear weight on your newly angled foot and leg.  We are very proud of you for all that you’ve been through this first year.   Being chosen as your mom has been the greatest blessing and honor that God could have given to me.  You see God made you perfectly for our family and he designed us to be the perfect family for you.  It has always been a part of his plan.  I love you my little one and celebrate you today.

The Return Visit

Last Wednesday we flew back to Minnesota for the post surgery follow up appointment.  Both of us were sort of dreading it yet looking forward to putting this part behind us as well.  Wednesday night we got to spend the evening seeing old friends (and new.. cute little Lincoln Konz) and then saw the doctor on Thursday morning. 

The removal of the cast went pretty well.  He let her sit on my lap while he did the sawing and she handled it well. Next came the extraction of the pins .  She has two pins in her tibia holding the 3 segments of her tibia together, hopefully you can see them below.  I know on my last post everyone couldn't see the pictures.  The pins actually come outside of the skin which you can't really tell from the picture and are hooked on the ends so that they can be grabbed on to when the removal part is needed. The outer most edge in this picture is the cast.

After the cast was off he explained "we're really high tech here in this office" (insert sarcastic tone)and he pulled out a pair of needle nose pliers from a drawer, put gauze over top of her pin and then just like that he pulled them right out of her leg.  No meds, no...nothing.  It sort of took her breath away each time but after that she cried for a moment and then it was over.  I took a pic of the pins post removal because the long one was just so big and it just blows me away to think it was buried inside most of her bone and he just pulled it right out of her leg.  Amazing.  The long one you see is laying next to my hand and is nearly the full length of her leg. The shorter one which came out of the front of her shin also in the picture. I wish I could turn the picture around for you but I'm having computer problems.  You get the point though I'm sure.

After the extraction of the pins he made a splint for her out of casting material.  She wears that off and on for 2 weeks, has physical therapy and does stretches for 6 weeks and then will be fitted for an AFO or Ankle Foot Orthosis.  In every day terms it's a brace that she will wear for an indefinite amount of time....or at least we didn't ask for how long.  It will have some sort of lift in it that makes up the difference in her leg length discrepancy until her leg is lengthened in the future and so for now she'll learn to walk with it on.

But perhaps the biggest part for me after all of the painful stuff was over was the looking at her new leg.  The surgery changed the look of her leg and while it's supposed to be for the better, it's just different.  It's kind of a foreign and yet natural feeling that in a way I'm sad that her leg looks different.  Regardless of what needed to be done to give her the ability to walk I loved the way her leg was before because I'm her Mom and Mom's love their babies no matter what.  In my eyes her leg with the bump and scar was beautiful just the way it was because that's the way God created her.  It was the gift that I was given in the delivery room on that day and it's what I fell in love with from day 1 of her life.  Right now I'm kind of quietly mourning that small loss as each day I just look at her now differently shaped leg and study the 3 new scars and 2 new pin scars among all the other differences that her little leg has. I guess I'm learning to love the look of this new gift, and how it reminds me daily of the fact that even though we all have scars of different kinds in our life our Father in Heaven loves us no matter what.

So long Minnesota.  We'll be back again hopefully BEFORE the snow falls later this year.

The One With Pictures, The Last One

The last one for now anyways....

Yesterday was Friday.  It was 2 days after her surgery.  The casting day.  Once they took her off the epidural we switched to oral meds and they began to wake her every 4 hours to check vitals and give the meds.  We were up and down through the night Thursday evening and on Friday morning she woke at 6am happy and perky.  It made my heart warm with joy to see her feeling better.  We knew that she was getting her cast that day and they had already begun prepping us for the experience.  I didn't think casting was really that big of a deal but taking the cues from the staff it seemed they were making a big deal of it. First the Child Life counselor came in with a book of pictures to explain how the process would go and then she asked us what diversions worked well with Katelyn.  Does she like music? What kind of toys hold her attention? etc...  Following her brief interview came the nurse who talked to us about the drugs and how casting can be "uncomfortable" (that stupid word) and do we sedate or just heavily medicate etc...  She also mentioned that the parents should come along for support.  Of course I already knew from that picture book that you see everything (and for us means 3 incisions and two metal rods sticking out of her little leg) so thoughts of "Joey you got this one I'll just stay back and sit this one out" went running through my head; however, in the next moment I thought "no I can't not go, I have to be there with her, I'm the Mom".  Time passed and it was finally our turn. The casting tech ended up bringing a cart to our room and doing the procedure on our bed.  The interesting thing was that the sedation meds actually had the opposite effect on Katelyn.  Once administered she actually got loopy and hyper at the same time.  It was comical rather.  In the pic you can see Joey holding her, the child life specialist using her diversions, the nurse doing her thing and the casting tech doing her business.  Takes a lot of people to give a baby a cast I guess.  Turns out she did feel pain but it wasn't extreme and the wounds weren't completely exposed so both she and I survived the ordeal. :)

A few hours after the casting we needed to go for final x-rays.  We requested a copy so that our Ortho doc in Ohio can have some for her follow up in May.  I thought it would be interesting for you to see a little bit of what's going on inside her body.  Image number one is the day before during our pre-op visit.  It's a side profile image of her left leg.  All you see present is the tibia bone and you can see that it's curved and not straight like most regular shin bones.  That's what makes that little bump with the scar/dimple that she had on her shin. You can also kind of make out that her foot points downward and not at a 90 degree angle also.  That's where the tendon release/lengthening came into play.


This next one is taken the day we did casting which was Friday 2 days post surgery.  You can see the cast which is surrounding her leg.  You can also see the pins and where her bone is broken into three segments because he did a double osteotomy. Yes those pins come through the bone, muscle and skin to the outside of her body.  Hard to believe. Also even harder to believe that in 30 days they just pull them out and it stings for a bit and yes, I have to be present during that procedure.  Great.... Anyways, her foot is also finally closer to 90 degrees as well (which remember is the whole other half of the surgery) and we're hoping with some physical therapy that we'll get it almost there.


And here we are today, Saturday.  Sometimes you go stir crazy as the parent with a child in the hospital just staring at the same walls for hours on end and trying not to stress about your children.  We try to kill time and make her feel better with things like new toys, visiting the fishies in the playroom, sitting in the sunshine, visiting the Ronald McDonald family room and wagon rides.

We're due to return home tomorrow.  We've had a few unexpected delays (she keeps throwing up) but provided that's better tomorrow we should be all set to come home.  It's been a really long week, we're all missing our beds and of course we miss the 2 big sisters and big brother waiting for us back home.  We've been through a lot this week and we've swam hard through that river of uncertainty.  But you know what? I did find the strength to get through each day like my friend said I would, and those waters of uncertainty, they didn't wash over us.  I'm so thankful that I have great friends who prayed for us, visited us and are ready to support us at home.  We also are thankful for a family that took care of and spoiled our other children while we were away, and a creator in heaven who ALWAYS keeps his promises.  So long Minnesota, we'll be back again in 30 days.

The Other Half of Yesterday

It was just a few hours that we waited.  I think in all we said goodbye at 7:30am and we saw her again at 10:30am.  The doc came out to the waiting room and told us things went well.  He ended up doing a double osteotomy which means that he cut her tibia (shin bone) twice in order to straighten it.  He also lengthened 3 different tendons in the back of her leg in order to get her foot into the right position. I noticed as he was talking he was holding a camera...(you know where this is gonna go right?)  I never have really mentioned in previous blog posts that body fluids/being the nurse type is not my best area; but let me tell you now, it's not.  Like, really not a strong suit of mine.  Just the sight of someone in scrubs make me queasy because it means that medical stuff isn't too far away.  He explained that she had a fibrous tendon where her fibula should have been (some kids with FH do have this, it's common) sort of like her body was trying to make a fibula in utero but it never calcified and the muscle didn't adhere to it.  Hers was so large though he had to remove it.  Please note these are all my unofficial terms and remember he's holding a camera and I'm wondering when it's going to enter into the conversation so my memory of his exact medical terms aren't super clear.  So then he said, "do you want to see the tendon?" (glances at my face) "Oh maybe you don't.. Well I can show you the incisions?"  Then as fast as he can he's scrolling through pictures.. His point was really to show us where she had been cut and then for "fun" to show us the fiberous strand he removed.  We will never see the incisions because she has now a soft cast on and tomorrow will get a plaster cast on until we come back in 30 days.  It wasn't really that bad I guess to see the pictures and as the parent I should know I suppose.

The doctor finished the conversation by explaining that because he did a double osteotomy she now has two pins in her tibia to fixate (hold in place) the fractured areas.  Those pins though are not totally buried inside of her (like I thought they would be) they come out of her foot and when we return she will have them removed.  I wasn't expecting that.  He said that if the pins were internal one day they would have to have a full surgery to remove them but if he left them extruding we could just remove them when we return.  Lovely. He said she wouldn't be in any pain because it's kind of like a hole for an earring.  Ladies have them and they don't feel anything once the initial tenderness is over.  Just before he left us he mentioned in closing that "she's been cut a lot and so she will be uncomfortable" but she was given an epidural that should be in for 3 days to keep her comfortable. Uncomfortable I've learned quickly is a soft word for PAIN.

Off we went to see her in recovery.  She actually held her hand up to her daddy.  She loves him so much and so far he's the one who can rock her to sleep the best.  The rest of the afternoon was spent watching her sleep, rocking, a visit from a therapy dog, a parents tour of all of the hospital amenities, us chatting with friends who came to visit and distract us and so on.  It was nice. However, eventually the evening arrived and at about 9pm she was starting to actively get fussy.  She just needed to sleep, but who could blame her for being so miserable. I'm pretty sure she had a least 6 tubes/wires coming out of or hanging from her body. She kind of did these freak out things where she would waive her hands in the air and scream.  They gave her Valium for muscle spasms but Valium stings in the IV so she freaked out even more.  There was just no consoling her.  They tried Benadryl and Tylenol to just put her to sleep but she just kept fighting and fighting.  It was hard.  Really hard.  I think watching your child be in pain has to rank up there with some of the worst things to experience.  At the worst point I was sobbing holding her when she was screaming, Joey was trying to help, the nurse is looking up what other meds to give her and asking me if I was ok....ick.  It was hard.  Eventually she fell asleep with Joey.  Thank you God for sleep that rests and restores our bodies.  Joey went to the hotel and I stayed and she got to sleep until about 4am when she awoke and the fussing began to escalate again.  During that episode (which lasted about 2 hours) I was just done and said "we need to just knock her out or something" so out came the Morphine.  It does a body in pain well.  But the flip side is she's just so medicated or drugged I just feel horrible for that too.  There just isn't any winning at the moment.

So here we are today.  This morning they decided to remove her epidural.  The sight was getting pink and the talk of possible infection was looming.  Out it came and today we will work through weaning off the epidural meds and onto oral/iv meds.  They can experience some break through pain during this process but so far she has been sleeping.  Well actually now as I'm typing this she's waking up on Joey's lap...we'll see how today goes.

Remember that river of uncertainty I talked about in an earlier post?  In the words of Dory, from Finding Nemo..."just keep swimming, just keep swimming".   Just please pray for us as we swim.