Previous posts about Henry & fibular hemimelia:
Henry’s Little Leg
On the way into the doctor’s office yesterday, we marked the gorgeous leaves that had fallen in the parking lot–Henry, look at the leaves! They’re so yellow!–and I reached into the diaper bag to make sure our notebook was still there.
We took a list of forty-two questions to our follow-up appointment with Henry’s orthopedist. Dr. S was patient and forthright as we went down the list, concern upon concern broken into categories. Henry wriggled in our laps, not so patient. Maybe a glimpse of our own insides, humming and restless with stress, with worry. Once we let him down, he made a beeline for Dr. S, who let him play with his badges and still, somehow, kept his focus on us, kept saying things like osteotomy and ligate, never missing a beat.
It was comforting, somehow.
Not all of the answers we got will matter to anyone but us, but some we’ll share here. To educate you. Maybe to comfort you. To fill in some of the blanks and we don’t know yets. To keep you posted. To keep a record.
What surgery will Henry be having?
We’ve put this question here again because our answer is now both definite and different. Dr. S will be performing a modified Boyd amputation along with a tibial osteotomy. In more general terms, this means Henry’s leg will be amputated through the ankle, but his heel bone (calcaneus) and heel pad, the usual weight bearing structures of the lower limb, will be preserved. Henry’s heel bone will be fused to his tibia. As we’ve mentioned before, Henry’s tibia is bowed. There wasn’t a fibula there to keep it straight. The osteotomy’s purpose is to straighten the tibia. Both the Boyd procedure and the tibial osteotomy aim to give Henry a longer, straighter left leg. This will help with prosthetic use, among other things. The ultimate goal, of course, is to allow Henry to walk as easily as possible.
The surgery will take place on December 10. We aren’t yet sure what time of day.
What will Henry’s recovery be like?
We have more definite answers here, too, though they can’t possibly encapsulate or prepare us for the experience. We’ll be in the hospital between one and three days, depending on how Henry is doing. A metal rod or pin will stabilize the fused bones in Henry’s leg, and he’ll have a cast to protect his bones and the pin. This will be put on before he leaves surgery. We’re fairly certain he’ll have a long leg cast rather than a spica cast, for which we’re thankful. The current estimation re: how long he’ll be in the cast is 4-6 weeks. We have a follow up appointment for X-rays on January 6, at which point Dr. S will make a choice based on how well Henry is healing.
This is a major surgery. Recovery will be difficult. Our focus will be on keeping Henry as comfortable and happy as we can. That will include cuddles, pain management, babywearing, and keeping to our usual, quiet routines as best we can.
Can we visit Henry? When? Will we see you at Christmas?
Dr. S has said we can resume activities like taking Henry to school and church, seeing our loved ones, and spending time at the park as soon as we think Henry can handle them. We won’t likely travel during the Christmas season, and we probably won’t have house guests either. We will invite visitors when the three of us are ready. That may take a while.
We realize this isn’t the answer some of you will want. We know you love us and want to support us. We know you love Henry, and we know you’d like to see him. You don’t have to be physically present to show us how you feel. We can feel your love and support from wherever you happen to be.
When will Henry get his prosthetic?
This depends entirely on how well and how quickly he heals. We will have a consultation with the prosthetist while Henry is in the hospital, at which point we might have more to tell you. Our best guess is that he’ll be fitted a few weeks after his cast comes off. He’ll receive the prosthetic once it’s been made, likely a few weeks after the fitting.
What can we do? What do you need?
Many of you were kind enough to bring or send us a meal after Henry was born. That was really helpful, so we’ll be setting up another sign-up sheet at TakeThemAMeal.com.
Henry loves to check the mail with his daddy in the evenings. If you’d like to send Henry well-wishes or other baby-safe mail, or if you want to brighten our days with a holiday card, please ask for our address.
Many of our friends and family members have sent us links to articles or blogs about amputation, successful athletes with prostheses, new prosthetic technology, etc. Although we appreciate that so many people are thinking of us, we have done a lot of looking and searching on our own. In addition, many of the complications older amputees face, such as phantom limb pain and blood flow troubles, do not apply here. Mostly, we have plenty to think and learn about with just our Henry and his particularities.
Please do ask any questions you have. We’d rather have you ask than speculate.
If we need anything else, we’ll say so.
Finally, please keep this boy, keep all of us, in your thoughts and prayers.