It’s been a while since I’ve written – too long – and I miss this space. I have more to say and share here, but first I want to start with an overdue update on FangFang’s surgery and recovery. My last post was written the night before surgery. In the morning, we were up and checked out of our hotel and arrived at the hospital by 6:45, our designated check-in time.
Her surgeon actually saw us in the lobby while we were checking in and came over and talked with us. He said he might end up only rodding her right leg – that was the first I’d heard of this plan to potentially leave the left femur alone, and it left me anxious that we’d have to go through this surgery twice in a short span of time, instead of getting the recovery period for both legs over with all at once. There is a reason that we travel to Omaha, though – Dr. Esposito is one of the best (if not the absolute best) pediatric orthopedic surgeons working with children with OI, and we’d have to trust his judgment.
Overall, we were pretty impressed with the team in place in Omaha as we talked with them in preparations for surgery and as they helped FangFang get acclimated.
We had only one unpleasant interaction – one of the pre-op nurses had asked us to get out a favorite blanket or stuffed animal for FangFang that she could take back to the OR with her, so we did that, only to be told by the nurse who was wheeling her back for surgery that she wasn’t really supposed to have her own things with her – but when FangFang protested and I argued that the other nurse had specifically encouraged us to get out her blanket, she was allowed to take it back with her.
Once FangFang went back to the OR, my mom and I ate breakfast (FangFang was NPO in preparation for her surgery, and this girl loves her food – no way were we going to be able to eat in front of her without feeding her!) and then sat in the waiting room and did a bit of work.
I was initially disappointed when the nurse came out to tell me that they’d finished with her right femur and were not going to touch her left, but when Dr. Esposito and Dr. Wallace came to talk with us, they said it was because the rod in her left leg actually looked better than they expected, and they didn’t think they could get it much better right now, so they’d rather not touch it, and hopefully we’d get a couple years out of it. I could live with that!
The before and after pictures are pretty striking. You can see the extreme curve in her femur as it was before surgery (and the way it lights up bright white, indicating that it has broken and healed that way over numerous untreated or poorly treated fractures, which makes my heart ache). And then you can see how much straighter it looks now with the rod placed. Of course, the surgeons had to break her femur in two places in order to straighten it, which is a major cause of the pain she experienced after surgery.
I was allowed to go back to FangFang soon after that, once she started waking up, and she immediately started crying and asked for me to hold her and wanted food. The nurses warned me that giving her too much food and drink too soon would likely upset her tummy, but as a mama of a child who has experienced food insecurity and who senses safety in part through the availability of food, I made the choice to let her eat and drink more than would usually be offered.
Nervous about hurting her, fresh out of surgery and with so many wires attached, I did leave her on the bed and just wrap my arms around her while we were in post-op, but as soon as we were up on the floor, the nurses helped me get her onto my lap, where she settled in much more happily.
And there I was rewarded for my liberality in dispensing apple juice and jello with several instances of projectile vomit! We got ourselves cleaned up, though, and FangFang slept for much of that first afternoon, leaving my lap only when it was absolutely necessary.
We tucked her into bed at night time, but none of us slept all that well – she still had an epidural in for pain control, and with that, they were checking vitals every 2 hours. The next morning we talked with the pain management team about getting rid of the epidural and transitioning to IV and then oral pain meds. They have a good strategy in place, in which they turn off the epidural but leave it in and see how the patient responds, and if they need the epidural meds, they can always turn it back on. FangFang definitely experienced more discomfort without it than with it, but everyone agreed that her pain seemed manageable, and she appreciated not having to be hooked up to so many wires. She, again, spent most of the day sitting on my lap. We watched some Daniel Tiger DVDs and played with a doctor kit Matt’s cousin ordered for her from the gift shop.
And in the evening we went for a ride in the wagon, which she loved. She so wanted to get out of that hospital room!
While we were out for our walk, I grabbed a photo of these signs hanging on our door. Everything about the Omaha Children’s Hospital speaks to their expertise in interacting with children with OI. It’s not just that Dr. Esposito is so amazing – though he is – it’s that everyone there is experienced in working with kids with OI and knows how to do so.
As wonderful as the hospital is, we’d really much rather be home. We advocated for a discharge as early as possible, and everyone was on board with us leaving the hospital and heading home Thursday morning, earlier than we’d thought possible, for which we were all thankful!
We were able to keep her pain well managed with just the oral pain meds – honestly, she seemed more disturbed by the pain from removing bandaids than by any pain associated with the femur fractures and surgery itself! – and within a few days of our arrival home, we were able to wean her off of the heavy duty meds, down to just Tylenol and Ibuprofen.
We were all glad to be home and be together. For the first day or two, FangFang didn’t move around much, but this girl wasn’t going to let anything like a post-op femur rodding slow her down for too long – within a couple days of our arrival home, she was scooting around the house just like normal. She hated having the splint on, but she tolerated it, and we’d give her short reprieves for a bath or, once she was three weeks post-op, to let her sleep without it. That wasn’t exactly doctor approved, but she was sleeping horribly with it, and consequently Matt and I were sleeping horribly, and we just hoped we weren’t being horribly foolish!
Our instructions were to keep her non-weight-bearing for 4 weeks and then we could remove the splint and go in for follow-up x-rays with our local orthopedic surgeon, which we did at exactly the 4 week mark. Everything looked good on x-rays, so she was cleared to return to normal activity, for which we are all very thankful!
FangFang is back to crawling again, and she and I have been going to aqua therapy – physical therapy in the water. Aqua therapy is particularly awesome for kids with OI, because they’re able to work on developing skills without having to support all of their weight to do so. She’s doing great with supporting increasingly more of her weight while standing, and last week we started working on taking some steps and cruising. She’s just starting to get the motions down for that, which means I support most of her weight while she works on it, and my arms were sore after our last session! She is growing and developing and working on gaining those skills, though, which is so exciting to see.
This phase of the journey is a bit more unpredictable. I knew we’d need to get FangFang into PT, I knew we’d work toward getting her to stand and walk, and I knew she’d need her right femur rodded before she got too far along toward those goals – but now that her surgery has happened, it’s impossible to say how quickly she’ll begin to stand and maybe even walk on her own. She is motivated and excited about each new milestone she reaches, and we’ll just have to see what the next months hold for her and for us!