Our First Major Fracture

We’ve known all along that FangFang’s osteogenesis imperfecta would mean that she’d be highly susceptible to bone fractures, and we were a bit relieved when, in January, we experienced what we believe was her first fracture since coming home. We made it through that and breathed a sigh of relief! It was relatively mild, though – we weren’t even sure anything was going on until the morning after it happened. And honestly, it made this OI mama gig seem pretty easy!

But this week we had our first real, major fracture. FangFang’s newest skill, of which she is immensely proud, is that she can go up and down the stairs by herself. She sits on her bottom and scoots herself up or down one stair at a time, and while I wouldn’t let her do it totally unsupervised, she’s been pretty consistently safe.

We invited some friends to come over for a low-key hangout to celebrate the 4th of July, and while they were here, FangFang was going from me (upstairs) to Matt (downstairs in the studio), and as she was scooting from one step to the next, I heard a crack, and then she started crying very loudly. FangFang has a flair for the dramatic, so it wasn’t as much the intensity of her cry that alerted me to the fact that this was something serious, but rather its persistence and her self-splinting of her leg (positioning her other foot underneath it) to protect it. I scooped her up right away and carried her upstairs and offered a bit of comfort and had Matt go get our break box from upstairs.

We gave her the heavy duty pain meds that we keep on hand for these exact situations and splinted her leg. Nothing looked displaced, and the 4th of July is probably one of the dates on which I would least like to go to the Emergency Room – I am pretty uninterested in spending the evening competing for medical care with people who have experienced fireworks accidents, and I’d rather we not be the guinea pig for the new residents. We opted to medicate and splint at home, knowing we’d call the orthopedic surgeon in the morning to try to get some x-rays to make sure additional treatment wasn’t warranted. There was quite a bit of crying, but we got her splinted and calmed down and set up watching tv.

Then it wasn’t long before, thanks to the intense meds, she slept for a couple hours before waking up in pain again. I felt so bad for her – at that point, I really could only give her Tylenol and Ibuprofen, nothing more yet, and she was clearly in a lot of pain. I texted and then even called another OI mama and asked her what I should do. She said this really just is how it goes with this sort of fracture, that there wouldn’t be much more they could do at the ER, and we needed to stay on top of pain meds and just do all we could to keep her distracted. She was a lot happier once we gave her an iPad she could control herself (she likes to switch videos every 7 seconds or so!) instead of just putting one show on the tv. We were so thankful that something helped!

Thanks to her nap, she stayed up fairly late that night, and thanks to the intense pain meds, she was a little loopy, chatting with Matt and me about all sorts of topics!

We brought down a travel cot for her, so she’d be a little more comfortable without us having to carry her all the way up the stairs and jostle her getting her into and out of her crib, and I slept on the living room couch next to her, so I could be nearby if she needed me and could also stay on top of pain meds during the night.

She spent most of the next morning with my iPad. With a good pain med schedule, no movement, and an iPad, she was reasonably comfortable, but without any of those things, she was in quite a bit of pain. That meant that going to the ortho for x-rays that morning was pretty agonizing for her. I put her in her stroller once we arrived to minimize the amount of moving of her leg I’d need to be doing, but we still needed to move her to get x-rays and then to re-splint.

The x-rays confirmed what I’d suspected, a significant tibia fracture. They also showed what I’d hoped for, though, that there was no displacement and no treatment needed beyond splinting.

The nurse practitioner started removing the splint I’d put on before I realized what was happening – I haven’t quite mastered the OI mom skill of (1) comforting your hurting, crying child while (2) talking to medical professionals and (3) monitoring all medical professionals in the room to make sure they’re not doing anything you don’t want them to do. Truthfully, it wasn’t the greatest splint, and I knew it wasn’t great, but we’d been trying to get it on and stable while FangFang was in a huge amount of pain, so I was satisfied that it met the basic criterion of immobilizing the joints above and below, and I figured I’d re-splint with a better one in a few days once the pain went down. But once it was already off, I agreed that we might as well put on a better one. I was nervous about not doing it totally myself – we’ve heard some horror stories about medical professionals not understanding how to work with kids with OI bone – but I was actually very impressed with the guy who does the casting and splinting at our orthopedic surgeon’s office. He and I worked together to put on a new splint with minimal trauma to FangFang, though she still hated it, but now we’re all set for a few weeks.

For FangFang, Wednesday was really a day comprised almost entirely of lying on her little cot and watching videos on my iPad.

That prompted some jealousy, and some older siblings may have confessed to stomping their feet on the floor as hard as possible in attempts to break their own legs and get extra tv time. Technology envy is alive and well at our house 🙂

Thankfully – for everyone’s sake! – FangFang was feeling much better by yesterday. She got off her cot and started scooting herself around again, she played with siblings, we were able to wean down to just Tylenol and Ibuprofen, and she was so much more herself.

I’m still pretty bummed about the fracture – sad for FangFang that it had to happen at all and sad about the timing of it. Though it was nice at times to have some extra adults around, there are many ways in which it’s not ideal to fracture your leg in the midst of a party at your house! And my big girls were bummed to miss out on going to fireworks on the 4th. It’s also the beginning of July – basically the middle of summer around here – and I so love getting to take everyone to the pool, and while technically I could let her get her splint wet and then just re-splint with a new one afterwards, we won’t want to take this one off for at least a week and a half, so she – and we – will miss out on some pool time. But ultimately I’m thankful she’s doing so well now, and I’m thankful it wasn’t any worse than it is!

First Fracture? Yeah, Probably.

I was planning to write about something else today…but I think I should share about this instead. As a pre-adoptive mama to a precious little girl with osteogenesis imperfecta (OI), I did my homework. I talked to doctors, and I talked to other mamas. I prepared and traveled to China with a break box (a box of medicines and splinting supplies that would allow me to care for any fracture at any time). But I hoped I wouldn’t need it – not for a long time, definitely not while we were in China, and hopefully not until after our first trip to see the specialists at the OI clinic in Omaha. And I prepared myself mentally for the drama of it all. I’m not a stranger to medical trauma and the necessity of sometimes keeping a cool head, doing what needs to be done, and leaving the feelings for later. I knew it could still be tough, though – imagine a three-year-old fracturing their femur. Not all fractures are severe, but some are, and the probability of a severe fracture in a child with OI is significant.

We made it through China with no fractures, and I breathed a sigh of relief, and with our appointment in Omaha approaching, I was hopeful we’d make it until then without any breaks to any of FangFang’s bones. Alas, it was not to be. I’m pretty sure we’ve got our first fracture on our hands.

Remember that toy car FangFang so desperately wanted and was so thrilled to have?

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Well, she and it may have been involved in a collision with the other toy car last night. I knew that was a possibility when I ordered the car, and it did give me pause. However, what I’ve taken away from conversations with people with OI and mamas to kids with OI is that most of them would prefer to be allowed to play and have fun and risk the fractures, rather than being isolated and protected in a bubble.

After the crash, she cried and reached for me, and I held her and comforted her. We asked her if she had an owie, and she pointed at her lower leg, and once she calmed, Matt and I took a look at it. She let us look at and feel it, and she never winced as we palpated it. She sat on my lap and laughed at her siblings’ playing, and she saw her pajamas on the couch and asked to take off her clothes and put on the pajamas and didn’t have any strong reaction to pants going off or coming on. But she didn’t want me to put her down and did point at her leg a couple times. I checked in with another mama to a kiddo with OI, and her assessment from afar was that it was definitely not severely fractured but that it could be a micro-fracture or a slight crack, something that might not even show up on x-rays for a week or two until a callus has formed – or it could just be a normal bruise like any other child might get. If it were bad, we’d know, and we should probably try to make sure we didn’t let her do anything to further aggravate any injury there but otherwise just watch and see how she was doing. That’s what we did, and we had a normal bedtime routine, and she slept through the night just fine!

This morning she seemed a little off, though. She seemed a bit nervous to take off her pajamas, and instead of whipping her legs up in the air for her diaper change and then sliding them into her pants legs, she was picking up that leg with her hands. She’d say, “Mama,” and point to the same part of her leg that she’d been indicating last night. She was also asking for me to rub lotion on it. Poor girl, I think she may have thought that was the entirety of my repertoire for making things feel better! But she clearly felt like there was something going on that needed care. So…back to my OI mama friend I went, and her response this morning was that it really sounded like a minor fracture. That’s what I’d been thinking more and more, as well, and our leaning in that direction was strengthened when, as I was discussing the situation with my friend, FangFang began to attempt to splint the leg herself! Wow.

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I gave FangFang some Ibuprofen and talked through our options for our next steps with my friend and decided to take care of this one at home. We could have gone in for x-rays, either through the emergency room or calling the doctor who will probably be her local ortho, but there’s a good chance a small fracture wouldn’t have shown up on x-rays at this point anyway. Additionally, whether it did or not, it seemed clear FangFang’s leg needed a splint – for kids with OI, as my friend said, “If it quacks like a duck, then it is a duck, meaning if it seems like a fracture it’s probably a fracture,” and you need to treat it as such. I could do a splint quickly and easily at home, though. Beyond that, the biggest help doctors can offer is a prescription for stronger pain meds, but this one seems like it should be manageable with Tylenol and Ibuprofen. Plus she’s going to have a comprehensive set of x-rays next week in Omaha, and she’s going to be exposed to enough radiation in her life that I don’t feel the need to have a double exposure here in a situation where the x-ray would give us no necessary information.

We pulled out our break box and set to work on our first real splint.

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One blessing is that she’s already had her femur rodded in this leg, so we don’t have to do as significant of a splint. I believe the likely fracture is in her tibia, so the joints above and below need to be immobilized. For a non-rodded femur, we wouldn’t be able to stop the splint anywhere along her upper leg, though, or we’d be creating a site at high risk for a femur fracture, so we’d have to splint up past her waist. Thankfully, in this situation we can just splint through mid-thigh.

(For you OI mamas out there, her foot actually is at close to a 90 degree angle here; it just doesn't look like it because of the awkward angle of the photo!)
(For you OI mamas out there, her foot actually is at close to a 90 degree angle here; it just doesn’t look like it because of the angle of the photo!)

And here she is, all set and back to her usual happy self 🙂

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She seems slightly annoyed by the fact that the splint’s bulkiness and weight makes it a little harder for her to move around, but I’d rather face a bit of annoyance than a more significant tibia fracture! Overall she really seems completely fine, and I’m so happy about that! First likely fracture down with minimal trauma and with a cool bright blue splint of her choice! Now we’ll just hope we can make it to Omaha before we have any more significant trauma 🙂