At the beginning of February, we finally had another Orthopedics appointment. We hadn't been to one in a while because we were trying to stay out of less mandatory offices during Covid, so we hadn't been to Ortho in about a year and a half. (The mandatory offices for Emma are Pulmonology and GI, which we go to every three months. And the pediatrician for her yearly checkup and updated shots after her birthday.) We were excited to show Dr. Phillips that Emma had learned to "stand" on her "knee backs". However, he had different thoughts-- news I had been waiting to hear since he met her in the NICU at one month old:
"She needs leg surgery!"
He told us that the best man for the job is Dr. William Mackenzie in Delaware. Dr. Phillips said he has not done enough leg surgeries like Emma's himself to feel comfortable and wants to make sure she is in the best hands, so we got in touch with his assistant, sent Emma's CD of x-rays, and within a few weeks, had a video conference interview with Dr. Mackenzie on March 12th.
His assistant then called us back about meeting with Dr. Mackenzie for a doctor appointment in Orlando at the end of April since he comes down for a couple days every year for a skeletal dysplasia conference and sees patients for two of the days. We met with him on April 26th, a couple days before we took our mini trip to Hilton Head Island. He was very nice, said Emma's legs are great, aside from the obvious, and we got our three pages of questions answered by him and his assistant. However, are still waiting on a call back to see when "in the fall" Emma's surgery will be scheduled for, which will be done in Delaware.
Here is what we do know about the surgery: it is called a Distal Femoral Osteotomy and knee reconstruction, to both legs. He will bring the tibia back and down to line up with the femur. He will shorten the femurs. The hamstrings will become flexors. There will NOT be kneecaps inserted- it is not necessary. We were surprised by this, but the reasoning is because she would later need surgeries as she gets older to get larger knee caps and that is a waste. Michael asked about scars: she will have a cut on the sides of both upper legs. She will have plates and screws inside her legs, attached to the bones. Something we will have to remember when we go to theme parks or airports and other places with metal detectors.
The surgery usually takes six hours. She will get cylinder casts on her legs, up to her baby thighs, the legs will be slightly bent so the casts don't slide off, but there will not be any casting around her waist to get in the way of changing her diaper like I was concerned about. She will need to stay in the casts for at least six weeks and then we will drive up to Delaware for a second time to get them removed (since this is a special case, Dr. Mackenzie doesn't want us getting them removed down here) and then we will stay up there for a week or two and Emma will work with the hospital's physical therapists before we bring her home. She will need physical therapy a total of three times a week, for 12 weeks or more.
Emma will probably get a ligament reconstruction six months after the first surgery, by Dr. Mackenzie in Delaware, meaning we will drive up there a third time as well. I do need to ask if that surgery will also require casting and if so, for how long and can those casts be removed by Dr. Phillips here or do we need to drive up to Delaware a fourth time!? If so, we might need to invest in an RV! :)
Now please enjoy these many pictures of Emma's "crazy legs" (called Genu Recurvatum) because I sure will miss them after they get fixed and she has boring, normal people legs.
Also, to clarify because one of my best friends was asking recently: Emma does indeed have hip dysplasia, but she is not getting any surgery done on her hips. She can move her legs all around in the socket like a skilled gymnast, but they are in the socket. It's not an issue that needs to be dealt with. It does not affect her walking since she can "stand" and "walk" several steps (while holding onto the coffee table!! Go Emmylou!!) while on her "knee backs". And to clarify further, then I say she is standing on her "knee backs", she is actually standing on the bottom of her femur bone.
It will be super interesting (and possibly also heartbreaking?) to see how, and how slowly or quickly, she overcomes and relearns to crawl and everything with her legs being in different positions after the surgery(ies), as well as navigating around the house with hard casts on.
>> Also a quick, tiny note before ending this post, to throw two more photos in- on February 22nd, we went to Emma's GI appointment and that doctor wanted her to get blood drawn to see if she was low on any supplements that she wasn't getting from her formula. So right after that, we went over to the hospital for labs. Emma was such a trooper, although she cried the whole time, and grabbed onto Michael as hard as she could, and I was so glad they were able to get all the blood they needed. It looked like sooo much out of her tiny arms, for all the different things the doctor wanted to check for.
I kept saying, "You're doing so great, Emma! We'll get ice cream after this," which was only a joke between me and Michael since the lab techs didn't know that Emma doesn't eat by mouth.
Around this time we switched her from EleCare amino acid-based powdered formula to Kate Farms liquid formula. The results came back saying she was only low on Vitamin D, so I found capsules on Amazon that we could open and pour the powder into those bottles, along with her fiber powder and Pectin, and mix it all up. The two extra pictures I added are -- nope, not from Christmas -- these are the boxes of trach care and ventilator tubing supplies that we get to take care of this little girl. Every. Single. Month!!
No comments:
Post a Comment