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.
Wednesday, June 25, 2014
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
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.
Monday, June 23, 2014
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.
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.
Saturday, June 21, 2014
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
Monday, June 9, 2014
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?
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.
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.
Wednesday, May 21, 2014
Calling ALL of Henry's Heroes!
Are you one of Henry's Heroes? Do you want to help and better understand what is happening for Henry? Well, you have come to the right place.
Let me tell you how you can help.
1 First, most importantly, please keep Henry, his doctors and nurses, and us in your prayers.
When we chose Henry's name, I knew there was a Saint Henry and a Saint Joseph. However, it was not until Henry's baptism on July 12 that I looked up Saint Henry. Saint Henry's feast day happens to be July 13, and he is the patron saint of the handicapped. Pray to Saint Henry, who already has our Henry's back.
Pray to Saint Joseph, that he watch over his namesake and guide our family through the ups and downs of such a major surgery.
Pray to Mary, Mother of God, who knows the love of a mother who would take away her child's pain if she could.
Pray to Christ our Lord and God our Father, for their ever constant love and strength and comfort and hope. May God guide the surgeon to carefully and skillfully complete the rotationplasty. May God be with Henry's nurses and caregivers, that they may have all the patience to comfort a scared boy and his worried parents, to know when he needs help, and give them hands of healing.
Pray. I believe in the power of prayer and miracles it can bring. I will be holding onto your prayers as I wait during the surgery in the hours and days around it.
2 Second, get one of these cool bracelets. Show Henry your love, remember this blog to follow Henry's progress, and add to our fundraising effort to offset medical costs and travel expenses.
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Details can be found on the flyer below:
3 The third way you can help is to make a donation to the Hackerman-Patz House at Sinai Hospital. For ten years, the HP House has been providing short-term and long-term housing to RIAO and Sinai Hospital patients and their families. Many of those families are there for months as their son or daughter undergoes extensive surgery and physical therapy. We will be lucky enough to be guests there for our weeks in Baltimore. It is on the same campus as the hospital and is next to the wing where Henry will be.
If interested in making a donation to the HP House, click here. Read through the information and find the donation link on the left.
I just want to offer a shout out to my neighbor who gave me the idea for the phrase "Henry's Heroes". Creative people and good neighbors rock.
Finally, THANK YOU, THANK YOU, THANK YOU. Your support, prayers, kindness, and love mean the world to us. We would not be able to do this without it. It humbles us, amazes us, and touches our hearts.
Thursday, May 15, 2014
Happy 5th Birthday
Happy 5th Birthday, Henry!
I cannot believe that it has been 5 years since that amazing Friday you came screaming into our lives. You stole my heart that morning, and I couldn't love you more.
I love your sense of humor, your positive attitude, your never-give-up spirit, your smile, your hugs, your made-up stories, your fearlessness (someone to ride roller coasters with!), your kindness, your intelligence, your creativity, your love of all things Spiderman, your gentle touch with the dogs, your ability to make friends with anyone, your honesty, your love of your brothers, your laugh, your voice in prayers, your voice in song, your dreams of being a Rock Star, and simply, you. I love you.
I love our bedtime conversations, when you sit and color or paint for hours, reading books with you, and watching you play. I love how you help, and how you won't stop growing. I love your pride when you do something well or something new. I love watching you emulate your big brother, and how you are mostly inseparable from your little brother. I love how you never stop talking. I love watching you dance, and jump, and somersault, and skip all over. I love you.
Henry, we couldn't be more proud to be your family. Simply, you are a hero to us. You make us better people, better parents, and better Christians. We praise God for putting you in our lives.
Rock on, Henry! Happy Birthday!
Love,
Mom
I cannot believe that it has been 5 years since that amazing Friday you came screaming into our lives. You stole my heart that morning, and I couldn't love you more.
I love your sense of humor, your positive attitude, your never-give-up spirit, your smile, your hugs, your made-up stories, your fearlessness (someone to ride roller coasters with!), your kindness, your intelligence, your creativity, your love of all things Spiderman, your gentle touch with the dogs, your ability to make friends with anyone, your honesty, your love of your brothers, your laugh, your voice in prayers, your voice in song, your dreams of being a Rock Star, and simply, you. I love you.
I love our bedtime conversations, when you sit and color or paint for hours, reading books with you, and watching you play. I love how you help, and how you won't stop growing. I love your pride when you do something well or something new. I love watching you emulate your big brother, and how you are mostly inseparable from your little brother. I love how you never stop talking. I love watching you dance, and jump, and somersault, and skip all over. I love you.
Henry, we couldn't be more proud to be your family. Simply, you are a hero to us. You make us better people, better parents, and better Christians. We praise God for putting you in our lives.
Rock on, Henry! Happy Birthday!
Love,
Mom
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