Social media can be a blessing and a curse. On one hand, since we received Solly’s diagnosis, I’ve been able to connect with, learn from, and befriend so many Mamas who are walking a similar path as mine. Their insights and guidance have helped me to navigate so many tricky situations. On the other, the groups where I’ve met these mothers can quickly turn into a rabbit hole when your child receives a new diagnosis or medical recommendation. You hear the good, the bad, and the ugly, with the bad and the ugly often standing out significantly, especially when it comes to surgeries.
That’s why, when we received the recommendation for Solly to have the VDRO and pelvic osteotomy surgeries, I was in despair. I kept reading horror stories of extreme discomfort, muscle spasms, and endless pain that goes on for months and months. These surgeries are painted in the worst light, making it truly terrifying to even consider your child going through them.
What’s important to know is that the doctor, medical team, procedures for pain and bracing afterwards, and the child’s medical history all play an important role in how this surgery can play out. Every child’s experience can and will be different.
Three weeks ago, Solly had a bilateral VDRO and pelvic osteotomy. It was a tough and long surgery. The immediate recovery while in the hospital was equally tough. He’s lost a bit of strength and we dealt with pain, muscle spasms, and some nasty side effects of pain medications. We still don’t know what’s to come in another three weeks when he’s able to start weight bearing and rebuilding strength. I suspect it’ll take months for Solly to physically get back to where he was pre-surgery.
But, despite what I’d envisioned – a recovery full of pain and agony, Solly is happy. He’s comfortable. And we made it through surgery.
Fortunately, we don’t have stories of Solly being in continual, unbearable pain. In fact, aside from some initial pain and some GI issues related to pain medications and immobility, much of his recovery has been manageable. Not easy, but manageable. I know this is not everyone’s experience and I also know that when you’re faced with the prospect of this surgery, you want to do all the research and go into the decision fully informed. Keeping that in mind, I wanted to share a bit of our experience with the surgery and recovery to give more insight – and maybe some hope – for families who need to consider this surgery.
Our Surgery and Recovery Experience
I started to write this section and it quickly became a novel, so instead of walking through each step in great detail, I decided to keep things simple and post it as a Q&A, as if I was having a conversation with another Mama. Have a question that I didn’t answer? Feel free to post in the comments or email it to me, and I’ll gladly add it to this post.
Where did Solly have surgery?
Solly had his surgeries at UCLA. We opted to stay close to home rather than seek out a non-local specialist because, for one, I really liked his orthopedic surgeon at UCLA, and two, in the event that we had any complications after surgery, I wanted to be near his surgical team. Plus, his neurologist and pediatrician are at UCLA, so having the surgery there just made everything easier, again, were we to have any complications.
Did they operate on both hips?
Yep. Solly’s right hip has historically been the more affected hip (it’s been about 30% uncovered over the past two years), but his left hip quickly got worse (almost 60% uncovered), so we did both hips at the same time to avoid having to do the surgery twice and also to make sure we avoid a leg length discrepancy. The left side also required the pelvic osteotomy to help reshape his hip socket.
Did you have to get clearance from any other specialists prior to surgery?
Yes, prior to surgery, we needed to get clearance from his pediatrician and, because Solly has multiple blood clotting disorders, a pediatric hematologist. The hematologist advised we do blood thinners post-surgery until Solly is allowed to start bearing weight, which right now is slated to be 6 weeks post-op.
How long did the surgery take?
The entire procedure lasted about 7 hours. Solly went back for his surgery at 7:30am and a nurse in the operating room called me every 2 hours to give me an update so we knew exactly what was going on and that Solly was doing ok.
How was Solly’s pain managed during and immediately after surgery? How about after you left the hospital?
During surgery, his pain management team placed an epidural for pain meds, which stayed in place for 48 hours after surgery. That gave Solly an immense amount of relief in his legs. He also began receiving Tylenol and Oxycodone via an IV, and had Valium and Motrin on stand by. He started having muscle spasms once he woke up from the anesthesia, so we used the Valium early on. I went into this surgery understanding how painful the recovery is and how important it is to stay on top of pain management (once pain takes over, it’s often difficult to get it under control), so I insisted he receive all pain meds on schedule while we were in the hospital.
In order to go home, he had to be on all oral pain meds. We made the switch to oral pain medicine on our second full day in the hospital, right after his epidural was removed.
Solly went home with all four medications, however we immediately faced two problems: one, Solly HATES taking pain medicine (though he is perfectly happy to take his daily CBD and Keppra), and two, he started having really awful GI issues, which we determined was the result of the pain meds. We initially removed all but the Tylenol, and about 10 days after surgery, Solly was no longer taking pain medication unless he was in visible pain. Which has been maybe two times.
What bracing or casting was used after the surgery?
Historically, doctors use a spica cast after VDRO to help keep the hips in place during the healing process. This seems to be changing as I’ve seen some children come out of this type of surgery in a brace or other set up. Our doctor did not use a cast or brace but instead opted for leg immobilizers and a abduction pillow. Our instructions are to have Solly wear both during the night and then during the day, we can remove the immobilizers for 2 hours at a time so give the skin on his legs a break. We are also allowed to remove the abduction pillow at the same time as long as we keep his legs apart. I think sending Solly home with the immobilizers plus abduction pillow has made our recovery process much easier in terms of diapering, changing, transportation, and overall comfort. At first, I was nervous that he might be in more pain since he’s not held in one position as his body heals, but an orthotist explained to me recently that the spica cast is typically only good for children with high tone, and since Solly has undergone SPML and SDR and has little spasticity in his legs, he would be completely fine with this alternate bracing option.
We also have instructions for Solly to have at least two hours of tummy time each day. We leave him immobilizers and pillow wedge on when he’s in tummy time to help keep his body stable.
What guidance were you given regarding getting back to therapy?
Solly is allowed to head back to physical therapy at 6 weeks post-op. Up until that time, he’s not allowed to bear weight at all. That being said, we took him back to occupational and speech therapy about 10 days after surgery to give him a sense of normalcy and keep working on some of his non-weight-bearing goals. He was so happy to get back to NAPA and Manes for Movement to see all his favorite people. We have to hold off on hippotherapy until 3 months after surgery, but fortunately, the OT there offers sessions on the ground, so Solly can get some extra handwriting and fine motor practice in, including making snacks for and spending time with the horses!
One area in which we were not given a ton of guidance from Solly’s medical team, but got some excellent recommendations from like-minded families, was equipment and other things to have at home to make recovery easier. So, I’m working on putting together a list of items that we’ve found helpful throughout recovery. Once posted, I will link it here. I will also do my best to document Solly’s return to physical therapy and hope to write a post about that in the future. In the meantime, please let me know if you have any questions that I should include in this post by adding a comment below or sending me an email, and be sure to check out the VDRO highlight on my Instagram account for a more in-depth look at our time during surgery.