I’d hoped to get a longer update posted last night, but it just didn’t happen – comforting FangFang when she was feeling yucky and then sleeping when she was comfortably sleeping took priority! I do so appreciate the prayers and support from all of you, though, so I want to let you know where we’re at today!
To back up a bit, we’d been planning for months to do bilateral tibia rodding surgery yesterday, but when FangFang broke her right humerus about 10 days ago, I’d sent a copy of the x-rays to her orthopedic surgeons in Omaha, just in case seeing those images changed their minds about surgery plans. Their assistant e-mailed me on Monday and said Dr. Esposito would talk with me on Tuesday about our options, but I didn’t think much of it. The fracture wasn’t incredibly severe, and operating on two limbs at a time is a fair amount already. However, when we saw him in pre-op yesterday, he suggested that we prioritize what was giving her the most trouble but try to rod all 3 bones if possible. He said he expected the humerus to continue to give her trouble (it had fractured previously in China and hadn’t healed to be as straight as would have been ideal, so we’d already been suspecting it could be problematic for her over time), and as long as it’s incapacitated anyway, we might as well fix it now and just have one surgery and one recovery period for all of it. These are the moments when I am most thankful we come to Omaha for care. Having an orthopedic surgeon who has worked with hundreds and hundreds of kids with osteogenesis imperfecta and can make these recommendations based on years of experience that give him more expertise than anyone else in his field is so helpful to me as a mom when I need to make the ultimate decision about what we should do. Though I was somewhat intimidated at the prospect of FangFang having 3 limbs fully incapacitated for a complete 4 week recovery period, I agreed that his proposal made the most sense, so that became the new plan for surgery, and they were, in fact, able to get to all 3 bones! They were even able to use the FD rods, which can expand with her bones as she grows, which is awesome!
It turns out that adding on the humerus does change the pain management aspect of post-op recovery pretty significantly, though. For rodding in the lower body, the preferred strategy for pain management is to place an epidural, but that epidural does nothing for pain in her arm. When she woke up, she was pretty upset. She got some heavy duty pain meds, all in quick succession, and some oxygen to help her after an intense crying spell, and that all helped.
She remained pretty out of it for most of the afternoon and evening, though. She felt nauseous and wanted to keep her bowl nearby…which was a bit awkward, since she cycled pretty rapidly through cycles of wakefulness and sleep, so she often fell asleep with her head in her bowl. We’d try to lean her back and remove the bowl, at which point she would awaken, outraged, and yell, “I need my bowl!” Whatever you say, my child…
As the afternoon wore on, she started to have some longer stretches of more peaceful bowl-less sleep, though.
And then she had more periods of wakefulness, during which she had very specific instructions for me about how I was to sit next to her on her bed with my arm underneath her head. That I can manage 🙂
We were able to FaceTime with Matt and the kids, too. She remained pretty out of it until later in the evening, though. She had a pretty awake, alert period from about 7:30 – 10:00 last night, in which she seemed increasingly herself, beginning to show off what she was watching on her ipad to her nurse and chatting a bit more.
We actually got a pretty good, long stretch of sleep last night – by hospital standards, at least 🙂 We all slept pretty well until around 4:00, when FangFang was asking if it was time to wake up and eat breakfast, but I assured her it was still night time, and we went back to sleep again. In my least favorite of standard-hospital-policy experiences, though, the lab person came at 5:30 a.m. and turned on the light and announced that we needed to get the nurse to come in un-tape the board under FangFang’s IV hand so she could do a blood draw. I’ve already asked what I need to do to request that the orders for tomorrow morning’s lab work be changed to be for once she wakes up instead of at 5:30. How institutions that are supposed to be committed to doing no harm came up with the brilliant idea of waking children who would greatly benefit from rest at 5:30 in the morning to stick them with a needle and draw blood is beyond me.
But now that we are up, FangFang is enjoying one of her favorite benefits of hospital time – virtually unlimited screen time 🙂
She is definitely more herself this morning. She still tells me every 5 minutes or so, “Mommy, I feel sick,” but she is more interested in engaging, more friendly, and chattier with people she deems friendly (yes to her nurse, no to the lab tech who drew her blood).
The pain management team, which I love here, has already come by this morning, and they just turned off FangFang’s epidural. Assuming she does well without it, they’ll pull it, which is the first step in moving us toward going home, a prospect to which we are all looking forward. FangFang has asked about 12 times in the 2 hours she has been awake when she can go home to her brother and sisters. I’m anxious to get home, too. Today is Atticus’s actual birthday, and I’m so sad to be missing it 🙁 Of course it phases him not at all – we celebrated his birthday last week, and when I told him last night that it was his last day of being 2 and then he’d be 3, he told me, “But I am 3 years old, Mom!” Okay, my boy 🙂
Essentially, before we can go, we need to get FangFang transitioned to all oral pain meds, get her next Pamidronate infusion (which can happen after the epidural is pulled), and get her orthopedic surgeons to sign off on discharge. I’m hoping and praying for tomorrow (Thursday) morning. If you’d pray with us to that end, too, I’d appreciate it!