6 year old Elise's Macrodactyly Update, Right Foot - Surgery #2

My last blog on Elise was last July when we were surprised at our annual visit with our Seattle doctor, Dr. Mosca.  He recommended we seriously consider amputation of her right foot.  He was of the mindset that prosthetic technology has come a long way and that Elise would be done with surgeries on her foot (only 1 leg operation in a few years), she'd have no restrictions on what kind of shoes she wants to wear, and the social acceptance would be easier for others to understand with a prosthetic versus a very different and large looking foot.  Even though our gut reaction was hell no, we knew it had to do with the surprise element.  We respect him and researched the option. 

We also sought a 2nd opinion and traveled to another well-respected and experienced doctor in Boston, Dr Kasser.  Dr. Kasser was not at all in the camp of even considering amputation; he wouldn't even talk to me about it.  He was confident that he could reconstruct her foot to give her at least a few more shoe options without any impact to her functionality.  He did make it clear that future surgeries would be necessary though.  That did not surprise us.

We decided to proceed with Dr. Kasser.  We didn't want to take away the weight bearing sensation Elise has, or to take on the hardships of adjusting to being an amputee, and we simply don't care how  the foot looks as long as it's functional and doesn't cause pain.  If we end up going down the amputation route, we want Elise to have a say when she's older.

Dr. Kasser reconstructed her foot, specifically amputated the rest of her big toe leaving only the metatarsal and did as much debulking (removal of soft tissue) as he could without making a larger incision.  Dr. Kasser did not want to stop the growth of the great toe metatarsal head at this point with the chance it could grow out a little to give the look of a great toe in the future.  We'll need to balance that with keeping the length of all the metatarsals in her foot at relatively similar lengths so that the ball of the foot stays relatively aligned.

Elise had an MRI (with no sedation) and EKG in preparation for the surgery in Portland.  We spent one week in Boston.  Elise was in surgery a half day and spent one night in the hospital.  She was using a wheelchair and walker for 5 weeks. She progressed to a walking boot for almost 2 weeks.  The last step is keeping her foot wrapped with coban (a simple over the counter elastic bandage) compression bandage for 3 months.  So, all in all, it took 7 weeks to get Elise back in normal shoes.

Writing the facts of this whole ordeal is the easy part.  Writing about the emotional side and the results of the surgery is more difficult to articulate.  Simply put, I am disappointed with the result and relieved to be done for a while.   I hoped for more of a difference in the height of her foot to help with shoe fit.   Her shoe options are still very limited.   I was elated after her first surgery because it was so obvious just what an improvement it was.  I couldn't wait to take her shoe shopping, one of the best days ever.  This time around,  I was nervous to take her shoe shopping.  We did find one pair of shoes that I really don't think would have fit prior to surgery.  That was a happy moment.

 I don't regret our decision and I'm relieved there were no complications. I believe we received all the expertise there is from our network of doctors.  I believe Dr. Kasser is fantastic at what he does and did the best that could be done with reconstructing her foot without damaging it. I believe Nate and I worked as hard as we could to make the best decision for Elise. Elise is back in shoes and mobile just like she was before surgery and doing just fine. Why do I feel sad then?  Maybe I just need a little more time to let the proper perspective settle in.  I know deep down Elise will be fine with whatever challenges her right foot and leg will continue to throw at her.  But right now, I worry about what the future holds and I feel a bit defeated because I want to kick macrodactyly's ass and I just can't.  

Here are some pictures from Elise's 2nd surgery journey

Elise has an abnormal heartbeat so an updated EKG was necessary as part of pre-op in Portland.  She also needed an MRI up at OHSU which was 30 minutes in a loud tube while Elise watched Blues Clues with headphones. 

 Pre-Op Day in Boston at Boston Children's Hospital.  Very thorough and professional.  

 Morning of the surgery.  Nate and I wanted the whole family together to truly feel like Team Mather in support of Elise.

 Right before going in for surgery.  

After surgery

 Elise had just thrown up her 3rd time from anesthesia side effects and my brother surprised us at the hospital.  I didn't realize just how crazy much I cherish family support until I saw my brother, sister, and brother-in-law come out to help us.

Dr. Kasser signing Elise's cast.  We flew home 4 days after surgery.

Back home in Portland where Oma and Opa met us having flown back from Chicago early to help us.  Paul was a big helper pushing her wheelchair.

 Elise hopped around the house with her walker with no problems.

Cast change in Portland with our new local doctor, Dr. Katie Fuchs, who was Dr Kasser's resident in Boston just last year.  Meant to be.  What this picture doesn't capture was that a 30 minute cast change turned into over 2 hours of a very distraught (to put it mildly) Elise not wanting to take the cast off.

Before picture

After picture. tip of great toe was amputated.  

Before picture.  Big toe phalanx was growing upward

 After picture.  Thickness is still there but upward angle has been resolved by removing phalanx.

 Before picture of the extra soft tissue.  

 After picture.  You can see the great toe is shorter and a little bit of soft tissue was removed but not as much as we hoped.  Dr. Kasser warned us not to expect too much. 

Elise sporting her new Plae shoes that I don't think would have fit prior to surgery given the upward toe angle.  It's a tight fit but with the removable insole, it works.