Friday Update | 2 Days Post Surgery

We are two days post-surgery, and we have been amazed by how well Henry is doing.  He has this amazing spirit, and even now it comes out.  Not to say it has all been roses, for we have definitely had some heart-wrenching moments.  However, our little boy has smiled amidst his pain and discomfort, and itchiness.  There is nothing like multiple pain meds that lead to itchiness.  Oy!

So, first, enjoy this video message from our Super Hero Henry:

It is a little weird to see our 5 year old so loopy, but it is good to see him not hurting and showing off his happy side. :)

Henry had three special visitors on Thursday, June 26th:
Jen and B were in town from OH to meet with Dr. Standard for a check-up.  B, 11, had rotationplasty surgery 7 years ago.  Stacy and Jen started talking several months back.  Hearing how well B is doing, and seeing pictures of all she has done after her own rotationplasty has offered hope and inspiration.  It has also hugely helped us know that Henry will still be able to do it all after he heals, with improvement.  Thank you so much for stopping by twice to offer support as we begin our rotationplasty journey!

Henry's uncle Garth flew in from the Windy City just to see his Godson for a few brief hours.  Henry was so happy to see a familiar face!  It didn't hurt that Garth brought a few special surprises.  Only 1 day post surgery, Henry was a bit more active and nestled into a wheel chair.  Thanks to my brother for flying out and spending a few brief hours with boots on the ground.

Thursday and Friday Happenings:

Henry cruising for nurses!

OT  has had us very busy the last couple of days.  They had Henry out of his bed by noon on day 1 post-op.  It was a quick trip in the wheelchair to the playroom, where Henry fell asleep.  Just getting in the chair was exhausting and a little scary the first time.  We have all done better getting in the chair and getting around.  Henry even asked to get back in later.  Our awesome OT helped us petal tape Henry's cast with the Spiderman duck tape we brought.  Thanks to Pinterest, she was impressed that we knew to bring some, and his cast is the coolest one ever.  We'll get a picture of it later.  Check out hipspicacast.blogspot.com and mykidseatoffthefloor.blogspot.com for some great tips on how to take care of a spica cast.  moltoscherzando.blogspot.com also has a great tutorial on how to make underwear that can be worn over the cast.  Our OT also helped us figure out how to get our already potty trained 5 year old to the bathroom while wearing his cast.  It won't always be easy, but we can do it.

Our first night was a little rocky and exhausting as we tried to figure out what was the best medicine combination to help him relax and be comfortable.  Last night was a huge improvement, with some solid chunks of sleep.  It helped to give him a little of everything: pain medicine through his epidural, valium for muscle spasms, and Benadryl for all the itching.  I must say a thank you for random kid friendly movies at 4 a.m.

So, here are a few other pictures of our journey as we get ready for bed, night 3.  Thank you all again for the prayers and well wishes.

Post Surgery | Thursday June 26th

As the sun rises over Sinai Hospital, a new day has dawn.  Good Thursday morning from Baltimore.

With a few winks of sleep, the 3 of us are in the PICU (pediatric intensive care unit) for the day before moving into the pediatric room.  Luckily all on the same floor of this 2 yr old children's hospital unit.

Surgery took around 11 hours yesterday!  Henry's adventure began before at 6:30a with rollback to the OR at 8:30a.  Stacy and I received consistent updates about every 90 min to 2 hrs.  We finally saw him in the PACU at 8:00p.  He was calling for his mom.

After about 90ish min,  we rolled through the "underbelly" of Sinai to get over to the children's hospital side.  The hallway/tunnel seemed to be endless!  As we arose through the elevators, the pediatric team escorted us to our current PICU room.

Overall, the surgery was a success.  Dr. Standard explained in detail how the surgery went.  Albeit, a very meticulous process from beginning to end.  Starting with the "super ankle" surgery to the final x-rays post-casting and everything in between.  Each anatomy is different from the next.  Dr. Standard carefully worked around the major arteries including having to shape what little femur Henry had away from the femoral artery.  There are several screws and cables inside of the Super Hero! Only to make him that much faster!

Henry has been in and out of sleepiness, while taking in ice chips and sips of water.  There is some discomfort as to be expected with all of the IV's, ports, and a epidural.  He realized late last night that he had a spica cast on and was upset that he couldn't just roll over in bed.  His green blanket is providing him comfort.  I am hoping to be able to give him one of his Spiderman guys that he normally sleeps with today once we get through some of the nausea.

His spica cast is Spiderman red with blue striped "webs" covers from about mid-belly, down to his right knee cap and his entire "magic or lucky" leg side with his toes sticking out.  Even with the epidural, he can feel us touching his toes and is able to wiggle them as well.

So we start day 1 post recovery!

Stacy and I are extremely grateful for Dr. Shawn Standard, his staff and the medical team from RIAO and Sinai Hospital.  Dr. Standard's head nurse, Harriet, provided updates to us directly from the OR.  Through her we felt the comfort she provided with the anticipated calls. Marilyn, life care specialist, was awesome with meeting us consistently throughout the day and providing a tour of this facility.  She stayed late to make sure we got to Henry as soon as we could.

Our thanks to Stacy's parents, Ron and Cheri, for making the trip to BWI to be with us during the surgery.  Many crossword puzzles were completed yesterday!

We can't forget that we have two other wonderful boys back in the 'Nati.  Grandpa and Grandma Go-Gos (Ron and Gayle) are spoiling Ben and Logan while we are here.  With the age of technology we have been able to Skype and talk with them all.  It's not easy being separated by multiple states and when the routine has been interrupted.  Thanks Go-Go's for taking good care of the boys!

Thanks for all of the text, DM, and FB messages that Stacy and I both received throughout  yesterday.

Most importantly, THANK YOU for the prayers!  It was through those prayers that Henry had a successful surgery!

I hear the music playing, so that is my que to end this "Oscar-ish" post.  Thanks again for following our journey!

**** 9:00 AM Update: Picture! ****

Godspeed,
-GH

Surgery Day Is Here!

The day we have been anxiously awaiting for has arrived.  Super Hero Henry was in great spirits up until the flurry of the medical team were coming in and out of the pre-op room.  He fought past the fear with help of Stacy and I.  Stacy was able to help roll him back to the OR at 8:30.

Its's now 10:41, we just received the first update, surgery has been underway for about 30 min.

Here is a video post from this morning as we preparing to leave our temporary home at HP.

Thank you for the continued following and prayers.

Garrick & Stacy

Pre-Op Day and What is Rotationplasty?

Today is Monday, and we spent our morning at the hospital (Sinai Hospital) doing all the official pre-op work needed for Wednesday's big day.  It started by getting Henry officially admitted to the hospital.  Wow!  Henry was so excited to get a hospital bracelet.  Actually, Henry had an excited and positive attitude about everything today.  Which is good.  :)

Second stop was the Pre-Anesthetia Screening.  This meant more blood work (we had Henry's official pre-op appointment with the pediatrician and blood work at Cincinnati Children's last week).  Henry sat on my lap and whisperer "Ow, ow, ow," but he didn't flinch a muscle in his arm as I held it.  He is amazing!  The nurse just kept saying she wished all the kids coming through would be so good.
 
Next we headed over to the Rubin Institute for Advanced Orthopedics (RIAO) to meet with our surgeon, Dr. Standard.  We checked in and waited.  Then we had x-rays.  Garrick had to help hold Henry's foot pointed and his leg turned the correct way.  Henry tried, but every time the guy let go, Henry's foot would turn. LOL

 
Then we moved back to our patient room and waited some more.  Henry and his dad got creative.  Henry colored a sun picture that decorates our HP room door, and Garrick made this video:

There was also some Spiderman web shooting.  I read.

When Dr. Standard walked in, he immediately went into the details of the surgery.  First he explained that he had learned through more recent rotationplasty experience that when the patient has FH like Henry whose foot is pronate, that a Super Ankle surgery was also needed.  So, the first hour to hour and a half of the surgery Wed. will be spent doing this.  Dr. S carefully explained what he would cut and lengthen and how it will all turn Henry's foot and allow it to bend at least 90 degrees.  Currently it cannot bend even half that. This will help Henry use his ankle as a knee after the rotationplasty is complete.  This answers one of my questions last year in worrying about whether Henry would be able to successfully use his foot in that way as I worried about adding foot ablation.
 
Next, Dr. Standard explained where he would cut Henry and how this was a change in recent years that has significantly reduced the risk of infection.  Yeah!  I am praying that Henry does not get any infections.  This led to a careful discussion about how we would know if he had an infection and how we would respond to one in Cincinnati.  OK, I can handle it.  I think.
 
Then Dr. Standard explained how he would spend at least an hour identifying muscles and ligaments and tendons, and how he would remove one of the muscles to allow the best mobility at the hip.  Then he will begin detaching and turning his leg about 180 degrees and reattaching the muscles and tendons and ligaments.  He even drew a picture to explain where he would put in screws to fuse the hip and stop the small femur he has from growing further.  Though, Dr. S explained in detail, don't ask me to repeat anything more specifically. ;)  Finally, after they close the leg, they will put on the spica cast.  Dad made sure to put in Henry's request for a red cast.  Dr. Standard informed us that the surgery will take between 7 and 12 hours.
 
Blood loss is one of the biggest risks, and Henry will probably get a blood transfusion during the surgery and possibly another afterward.  Dr. Standard explained how that decision would be made.
I then got my random questions answered, such as timeline for post surgery, hints for physical therapy and the prosthesist, and that there are no restrictions for movement in the cast once we get released.
 
Finally, Chris, the PA who will be assisting us all day Wednesday explained more details about how they will use gas to put Henry under anesthesia, how it will be decided to wean the epidural, and how it will be decided to release Henry from the hospital.

Truthfully, you would think all of these details, the crazy amount of time the surgery will take, and talk about blood loss would make me more nervous.  Surprisingly, it made me feel more calm and definitely more confident.  If the surgery takes longer, I won't be sitting there nervously wondering if something is wrong (OK, I probably still will, but...), but I will know that Henry's surgeon is taking his time, meticulously moving piece by piece, watching the nerves and blood vessels and carefully considering how it will all work together to make Henry mobile afterward.  I have confidence in Dr. Standard and his team.  They answered my questions in detail, referring to improvements made that will make Henry's surgery a success.
 
Five and a half hours after we arrived at the hospital, we headed back to our home-away-from-home.  At the Hackerman-Patz House we connected with 2 other PFFD families who had children undergoing lengthening.  And the question came up, why rotationplasty?
 
Rotationplasty is an extreme surgery that has been around since the 1930's and is primarily used as a solution for people who have cancer in the femur.  It was later adapted for PFFD patients in 1950 by a doctor named Van Ness.  How crazy that something that seems so advanced and modern has been around for 70+ years!  The Van Ness Rotationplasty had a high risk of the leg turning back, and only in the last two decades have improvements been made that reduce/eliminate that risk.
 
For Henry, the rotationplasty would allow us to stabilize the hip given that Henry's PFFD is a class D, with no ball or socket on the left, thus no hip joint.  In fusing the leg backwards Henry's natural knee joint will serve as his hip joint with flexion and extension , though limited to no abduction.  His ankle joint, also now backwards, will be used as his knee joint.  His prosthetic will have a hinge at his ankle to allow a more natural gait.
 
I think the InMotion magazine produced by the Amputee Coalition gives the best basic explanation of rotationplasty.  See the article here.  I also got information from pffd.org.
 
OK, we are going to be Baltimore tourists tomorrow and we are ready for Wednesday, or as ready as ready can be.

Travel Day is Here!

A Father's Perspective

The day has arrived that we load up the “swagger wagon” and head east to Baltimore.  It really is hard to believe that this day is here.  It was last Spring that Stacy, Henry and I made the first trip to meet Dr. Shawn Standard and his staff at RIAO.  Through prayerful consideration, we jointly made the decision to proceed with the rotationplasty option for our Superhero Henry.

Allow me a moment to brag about my son.  As a dad of all boys, I am beaming with pride of each of their abilities, personalities and individualism.  Of course if there were to be a girl, she would have been “daddy’s little girl.” Henry and I have had a bond since day 1.  It was I who stood over the warming tray in the OR as he was being evaluated and was soon discovered that “something was wrong.”  I had to tell my wife “everything will be alright” as she laid on the OR table while Dr. Brenner completed the caesarian delivery.  At that moment, I was swept away with Henry to the NICU for further evaluations.  Scared to hell and back, I had no idea medically what was going on with my son.  His lungs were healthy, evident from his squeals.  After several minutes, the staff assured me that all of the vitals and organs were functioning.  We just didn’t know about his left side.  We also didn’t know if he had felt any pain, the poor kid was just trying to figure out why everybody was looking at him!  He was pretty darn cute, torticollis and all. 

We fast forward through the genetics testing, consults with ortho specialists and months of physical therapy with Tracie.  I had the flexible schedule to be able to take Henry to his appointments from day 1.  I know it killed Stacy not being able to attend or take Henry in my place.  With the PT for torticollis then working with the leg muscles, he and I got to know Mason Children’s pretty well.

From PT to prosthesis fittings, castings, adjustments (currently on prosthetic #5), Henry has always been a trooper.  He hardly ever complained or moaned is discouragement through it all.  Even just this week with pre-surgery physical.  I took him for his blood draw, the kid barely flinched as I was about to pass out! He has always proven to people that he CAN do what he puts his mind to. There is always a twinkle in his eye (or it could be he is just flirting with the ladies).  His spirit is uncanning, his determination is unreal and his zest for life is unmatched.  While Henry may be infatuated with Marvel’s Amazing Spiderman (he literally has Spidy on his prosthetic, his boxers, his pillows, his school bag, his pillow, every spiderman toy ever made etc…) he truly is my super hero. 

As we hit the road in a few short hours, please continue to pray for my son, his brothers, Stacy and I as the journey ahead is long and mostly unknown.  What is known is that Henry WILL conquer this next adventure with the same charisma and determination as he has put into everyday of his 5 year old life.  While he mostly “gets” what is about to happen in the next few days, his spirit is something so special that I can’t possibly fathom.  Henry truly is a gift from God.

Words cannot express our sincere thanks the outpouring of support, donations, prayers, well wishes and offers to cut my grass.  

In Christ Peace,

Garrick

Oh, the Amazing Things He Can Do

Henry has never ceased to amaze or inspire us.  Recently he has been on a streak that has my heart and soul cheering and jumping for joy right out of me.

In the past couple of weeks, Henry has figured out how to pump on the swing without wearing his prosthetic.  Once he got started he didn't stop for nearly an hour.  What joy and pride in his own accomplishment!

No surprise, once he figured out how to do it without his prosthetic, he figured out how to do with that heavy kevlar and titanium leg attached.

                                                                    Go, Henry, go!

In that same week, Henry's persistence and dedication in tee-ball paid off.  During a Monday night game, Henry helped get an out while playing first.  Then in the fourth and final inning, Henry got 3 outs while playing pitcher.  He outran (a tie on one) 3 players on the other team to home base!  I think you could hear all of us cheering for miles around. Henry earned the game ball.  It was a game, a moment, I will never forget.  I don't think Henry will forget it, either.

                                Here is Henry at the pitcher's mound, intensely waiting the next hit.

Oh, and did I mention that my running, swinging, run-scoring, baseball-playing 5-year-old also completed preschool this same week, and is ready for kindergarten in the fall?

Transparency in Fundraising

Fundraising has never been my forte, nor have I ever been comfortable doing it.  Sure I can sell tickets for a basket raffle or a pie in the face contest, count pennies for penny wars (Can you tell I work in a school?), and sell wristbands to connect friends and family to my little superhero.  I am not asking for money, I am selling something.

But ask for money for something so personal?  Why should others want to give money for something that does not affect them?

Yes, I have readily donated meals and money for gas when others I know have been in need.  I am happy to help.  I have prayed for the individual and families I have been blessed to be able to help, and some still weigh heavy on my heart as their stories are still unfolding.  I know I have not been the only one to help and have rarely been the initiator.  So, I guess it should not surprise me that such good people would want to help us.

Thank you is not a big enough phrase for all of you, for all of your prayers, donations, and love.  As we prepare for our journey east, finalizing logistics, packing for 5 people to be in different places at different times, getting our local medical support ready for recovery, getting our dogs and plants taken care of, getting a pre-surgery physical and blood work, adapting clothes to fit over the spica cast, getting coverage for work responsibilities, trying not to worry about that smiling boy undergoing such a big surgery, and preparing 3 little boys for what any of this means, it means a great deal to have this part of the burden lightened.

So, when we say that we will use any money donated to offset the costs of medical and travel expenses, what does that mean?

We are very fortunate to have insurance covering the cost of the surgery itself.  Our expenses here will be the deductible we pay every year.  Knowing others who do not have insurance to cover out-of-state medical expenses, I feel truly blessed.  For us, medical expenses may include the possible rental/purchase of medical equipment, and unexpected treatment not covered by insurance.

Travel and living expenses in Baltimore will be our biggest financial burden.  We are expecting to spend about 3 weeks in Baltimore for the surgery itself, with a second trip a few weeks later for cast removal.  Estimated expenses for our family to do this is about $3,000.  God willing and prayers said, there will be no reason to extend our stays in Baltimore.

Should there be any money collected that is above our need directly related to this surgery, the money will be set aside and saved for future needs related to Henry's lucky leg.  This may included follow-up visits with the surgeon or expenses related to making Henry's prosthetics.

One of our incredible neighbors is hosting a Scentsy benefit party for Henry's Heroes.  If you would like to place an order, you can visit her website katherinewhitson.scentsy.us and order.  Be sure to choose *HENRYS HEROS* as you check out.

Given the overwhelming response to the bracelets, we have also set-up a YouCaring.com fund for Henry's Heroes.  You can help our family here, as well.

From the bottom of our hearts, Thank You.