Surgery yesterday began at 8 am and went until 1 pm. Dr. Williams started by checking on the rib-to-rib VEPTR, and discovered that the bottom anchor of that rod had also migrated through the bone. In other words, she hasn’t had either rod holding her up for a month or more. There were no good places to reconnect the rod, and obviously her ribs have not been collapsing without the rod’s support. He decided to just take it out. He left the upper anchor in for now, just in case her chest does begin to collapse and we need to put in a new rod.
He then removed the long rib-to-spine VEPTR, which came out easily.
They used an in-room CT to create an image of her lumbar vertebrae so he could find the best place to attach the 38-mm(!!)-long screws for her new anchor. He ended up using L3 & L4, which are lower than her previous attachments. He also added some bone graft material between the vertebrae to get them to eventually fuse together. This means her activity will be more limited than usual – no PE for four months, and at least six weeks of no ballet, with limited participation for a while if she’s able to go back. Her range of bending motion may also be more limited than in the past. However, the good news is that he was able to install the MAGEC rod, and her body tolerated all of the work really well.
If everything holds in place, Miriam will go for in-office expansions with the magnetic remote every 2-3 months until the MAGEC rod is fully extended (28 additional mm). Dr. Williams expects this to take 2-3 years, by which point she may be grown enough to go through a final fusion. Because he removed the rib-to-rib VEPTR today, she shouldn’t have any need for surgery until then. The prospect of YEARS without surgery is thrilling, and we’re praying hard that everything holds so our sweet girl can finally get a break.
She was very uncomfortable and having some side effects from the meds for the first couple of hours, but after moving out of recovery to the IMC she began to feel better. She had a good night with a few long stretches of sleep. She had some tummy upset this morning from switching to oral pain meds, but otherwise she has done well. She moved out of the IMC unit to a regular floor, sat up in a wheelchair for over 20 minutes, walked to the playroom, and had a solid meal of mashed potatoes, strawberries, and chocolate chip cookie . She also got to pick a new baby from the toy cart! She was having some dizziness, so we decided not to rush going home. She’s currently asleep, and we plan to head home when she wakes up.
This is a very exciting moment – to have hope for the first time in five years that we won’t have to return to surgery next year. However, it’s kind of bittersweet. For most of Miriam’s life, she has been a VEPTR “rib kid.” Now she is a MAGEC kid (not that she wasn’t magical before), which is of course also very rare and special, but different. We pray everything goes well so that she doesn’t have to return to repeat surgeries in the future, but at the same time we’re so grateful to the amazing doctors who developed this technology that has allowed her to develop and grow like any other child. And we’re grateful to her surgeon, John Williams, who has helped her get this far (and who will continue to follow up with her MAGEC expansions), and to the amazing people at Dell Children’s who have always take such good care of her.
Speaking of Dell Children’s, Miriam and her sisters made a fundraising video for the hospital for the Project for Awesome happening right now! If you happen to read this within the first 48 hours of posting, please click here and vote for their video before Sunday at noon. All of the money raised will be split between the most-voted charities. Please vote and share with your friends!