Surgery Update

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 πŸ™‚

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 πŸ™‚ 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.Β 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 πŸ™‚

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 πŸ™ 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 πŸ™‚

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!

Another Trip to Omaha, Another Surgery

Later today, my mom and FangFang and I are heading to Omaha again in preparation for another surgery for FangFang. This time the plan is to do bilateral tibia rodding – inserting rods into both of her tibias (the main bone between the knee and the ankle). We’d talked with her surgeon last winter and spring, and he’d hoped that once her femurs were rodded, her tibias would do alright on their own, but since then she has fractured both tibias, with one of the fractures being quite significant. With that, the plan has changed. For her to continue to progress safely toward walking and other gross motor skill developments, which she very much wants to do, it will help her tremendously to have her tibias rodded. Those rods will straighten and strengthen her tibias, hopefully preventing them from fracturing so frequently, and when they do fracture, the rods will act as internal splints, lessening the severity and effect of the fractures.

I’m very much looking forward to having the surgery done. I’ll stop holding my breath and hoping not to hear that tell-tale crack every time she pulls herself up to stand on the couch and starts cruising along or scoots herself up into a low chair or tries to go up or down the stairs by herself.

I think it’s going to be safer for her, better for her ability to continue to develop her gross motor skills, and better for how her legs feel for her.

But I am sad that in order to gain all of those things, she has to endure yet another surgery. And we haven’t had great luck with fractures this last month or so. FangFang broke her right humerus just over a week ago.

And then the next day, she hurt her left arm. We weren’t sure whether it was a fracture or not, and she alternated between wanting to use it and wanting to have it splinted, and we have followed her lead on that. She seemed more confident that it was alright yesterday, so we’re hoping that’s a good sign and she’ll continue to be able to use it without issue.

Mostly I’m hoping that she won’t have all 4 limbs incapacitated at the same time. Two arms at once has been really hard, so I’m really hoping her left arm continues to feel alright!

Would you pray for our trip and for her surgery please? You could pray for these specific things –

  • Safe travels to Omaha and back.
  • My kiddos and Matt at home – Miranda, Madeleine CaiQun, and Atticus are staying home with Matt, who still has his regular teaching responsibilities this week, so the kids will be hanging out with various friends for many hours this week. Please pray for them (and for our friends), as this will be far from their normal routine, and pray for Matt, who will be working and parenting on his own for several days.
  • Successful bilateral tibia rodding – that the surgery would go well, that her surgeon would feel confident in the placement of the rods, and that she would have no complications. If you’re feeling particularly ambitious, you could pray that her surgeon is miraculously able to place FD rods, which are the type she has in her femurs, and which expand with the bone as it grows. He thinks her tibias are probably too small, and he’ll likely have to place a different type of rod, which he’d then have to replace sooner, but he still thinks that’s better than no rod. But we’ve heard from other parents that even when he expects not to be able to place FD rods, he’s sometimes able to do so, and that would be amazing.
  • Pain management – The Omaha Children’s Hospital pain management team is great, which is huge in terms of post-op care. Apart from making sure we avoid infection or actual surgical complications, pain management is really the biggest focus after surgery – and it’s a huge factor that plays into my next prayer request…
  • Discharge – We don’t know how long we’ll have to be inpatient after surgery. Assuming there are no complications, once we can get FangFang transitioned to oral pain meds, we should be able to leave and head home, and all of us do so much better here, so I’m hoping we won’t have to be in the hospital very long.
  • Emotional support in the hospital – FangFang is our ever-friendly, always joyful extrovert. But even she has a hard time after surgery. She’s hurting and sad and wants me to hold her and stay within her sight at all times. Please pray that my mom and I can care for her well not only physically but also emotionally.

And, while it feels a bit silly that I’m asking for prayers for myself as my daughter heads into surgery, would you please pray for me, too? I think it’s important to be real and honest about what my life looks like, and for those of you considering adopting a child with special needs, what life parenting a child with special needs looks like. Friends…I’m tired. We’re coming off of a week of hosting my family for Thanksgiving and caring for our 4 children, which is a lot normally, but add to that the fact that one child, for large portions of time, had zero arms available so needed an adult (mostly me) to do nearly everything for her, and I have a cold, and I have not been sleeping enough or sleeping well – it’s a lot. Physically, I’m tired. And beyond that I am emotionally weary.Β This will be our 4th trip to Omaha and our 3rd surgery in less than a year. I’ll be, again, leaving my other kiddos home while I travel, over Atticus’s birthday, no less, which is so hard on my mama heart. I’m tired from arguing with insurance companies; I’m tired from coordinating to get all the documentation we need for everything we pursue; I’m tired from reassuring jealous siblings who view a trip to the ER as a special “Mom date;” I’m tired from not having gotten to worship with my husband for nearly a year, as one of us is always in FangFang’s and Atticus’s classroom at church; I’m tired from coordinating logistics for all things; I’m tired from the ordinary demands of motherhood and friendship and life in general. I’m just tired. All around, I’m tired. I’m tired as I head into a week in which much will be demanded of me as a mom. Please hear me when I say,Β this is the life I want. Parents who knowingly adopt kids with special needs sometimes, when they express that things are hard, hear, “Well, isn’t this what you asked for?” Yes, yes it is. This is the life we’ve chosen; this is the life we want; and we wouldn’t trade it for anything. That doesn’t mean it’s always easy. I’m pressing on and persevering in the midst of all we have going on in our lives. I will continue to be the Chaos Coordinator and the Mama Bear that my kids need. But I would so appreciate your prayers for my energy, my stamina, and my heart as I do that.

I’ll keep you updated on how surgery goes and how we’re all doing as I’m able.