Because we had been anticipating E’s surgery and treatment for such a long time, we had plenty of opportunity to read, research, prepare for what life was going to be like when she went into spica.
But nothing prepared us for the reality.
At the risk of whining, here are the hardest things about having a fourteen month old in spica, or at least dealing with our toddler in spica:
- Since about 6 months, E has slept on her tummy, and spent a good portion of each night shuffling around and changing position. Now that’s no longer an option, she is miserable.
- She had a temperature after the operation. Nothing dramatic, just a low-grade fever from about 36 hours after surgery for a couple of days. Although a temperature of 38-40ºC is fairly run-of-the-mill for a toddler, when it’s a toddler that’s undergone a fairly significant surgery recently, you worry about infection, and when that toddler is now encased in a body-cast, you worry about how to bring the temperature down. And when they’re already taking paracetamol and ibuprofen for the pain, and the fever isn’t coming down, you worry more.
- Before the op, E had been cruising, crawling and exploring the world more and more physically. Now, a week into life in the cast, she is getting frustrated at her sudden physical limitations. I see her trying to turn over. I see her trying to crawl and weeping with frustration that she can’t. I see her being confused and upset when she can’t reach things. It’s heartbreaking.
- Over the last few months, E has gradually been playing more independently. She’s been able to go and find the books and toys that she wants to play with at that particular time, or head towards the room she wants to be in, plus bring herself over for a cuddle when she wants one. Now she can’t do any of that, and without language skills to tell us what she wants, we’re reduced to guessing. We spend the whole day thinking of things that will amuse her, and often failing because we’ve got the timing wrong. The same is true of eating and sleeping. We knew her subtle signals very well, and now it feels like everything’s changed and we can’t read her anymore, so consequently we keep missing the cues and getting it wrong.
- People who had been through this before told us to expect E’s appetite to diminish while she’s in the spica, and to try snacking – eating little and often – instead. E’s always been a light eater, bordering on fussy, and mealtimes have always been pretty stressful because she doesn’t seem to eat enough. Her lack of appetite since the op has been startling. She really doesn’t want to eat anything, except for the odd yoghurt, and maybe a slice of banana or a strawberry, or a tiny square of toast and honey. And milk. Lots of milk (but only in a bottle). So of course, that’s what we’re giving her, which just makes us worry about whether we’re setting up trouble for ourselves later on, because she’s eating like a baby half her age. Maybe it’s a comfort thing.
- E has always been a happy baby. She’s quick to smile and laugh, she has an open, curious approach and loves strangers and meeting new people, beaming at them and initiating games on the street and in cafes etc. She’s generally very easy-going. But since the operation, her default position has been crying – whimpering, really. She whimpers when uncomfortable (often), whimpers when bored (often), whimpers when frustrated because she can’t do a thing she wanted to (often), but also whimpers when something changes, or when something happens that she doesn’t like. It’s not a tantrum, it’s just being very sensitive to what she wants and needs (and hasn’t got, or isn’t able to do). But it’s ever so wearing for us. To top this off, she has also decided that new people, or people she doesn’t know very well, are not to be trusted. In the hospital, every time a person in a uniform came around the curtain around her bed, she would start to wail in fear and protest – understandable, really, because many of the strangers concerned went on to poke and prod her. But now we’re out of hospital and she’s still doing it, which makes being in public spaces hard.
- The cast is really heavy and awkward. It weighs as much as she does, and picking her up is difficult. Maneuvering her is hard, too, because of the position which means it’s almost impossible to turn her round while she’s on your lap and so on. You can’t pick her up by the underarms anymore, just by the cast around the waist/chest, so instead of a natural lifting action, you’re actually pushing inwards and raising your arms. Plus I’ve had carpal tunnel issues since she was born, and it’s become clear that all the lifting, twisting and carrying a suddenly-super-heavy infant is going to kill my wrists (not to mention back).
- We’ve had a few days of pleasant weather here in the UK, which is generally nice, except the raised temperature combined with the stupidly unseasonal cast means that E’s got heat rash all over her back and chest. We’re trying to keep her cool, dressing her only in a single layer of cotton to wick away any sweat and keeping her room as cool as possible, but if we have a sustained burst of good weather over the next few weeks it will be rather miserable.
- On discharge from hospital, we were told to administer ibuprofen and paracetamol alternately day and night, and to change her nappy every 3-4 hours. This means putting her to bed at the normal time (7ish) then getting her up at 11 or so for medicine and a nappy change, then back down again, then one of us setting an alarm and limping out of bed between 3-4am to do it again, then back down again until normal waking time at 7am. We’re bloody knackered. Worse, so is E. She seems to want to sleep longer and gets very annoyed with us constantly picking her up and flipping her over to do the nappy dance. It makes everyone grumpy.
- Before spica, we knew that we’d need to adapt or temporarily replace E’s highchair, car seat, pushchair and so on. We prepared as best we could, but the position of her legs (very upright) means that nothing quite works. She has to slump in her pushchair with one leg over the side. In the car seat, she needs to be at an angle so that her right leg can be posted in between the edge of the car seat and the car door (close it very carefully, now!) which means she’s on a slant with one shoulder higher than the other, which means the seatbelt isn’t secure. In the highchair, she will wedge in (just) but needs to lean back slightly, meaning food (if she eats any) goes everywhere and she can’t reach the tray to pick things up herself. Everything is slightly inconvenient and difficult, which makes the whole thing just a bit harder.
- We work. P commutes into London every day and M works freelance, with two current clients that require her presence for two days each per week. Up until now, E has been with a fabulous childminder during those working days. We interviewed widely and eventually selected the childminder on the basis of her willingess to take on a toddler in spica at some point (we didn’t know the precise timing when E started going, just that it would happen at some point) but now we are terrified that the childminder will take one look at her in her bulky, awkward concrete trousers and decide she can’t take her on during this period after all. And then what will we do? Plus of course there’s the realisation that even without daycare issues, its’ going to be nigh-on impossible to find someone reputable and experienced to entrust E to for an evening if we wanted to go out for a meal, for example. It’s been hard enough to do that even without the complications of spica care.
- Related to this, everyone else whose story we’ve read or who we’ve talked to about this seems to have either a) at least one parent not working/performing full-time childcare or b) extended family within spitting distance with apparently nothing else to do apart from provide childcare on a regular or ad hoc basis. Often, both (a) and (b) are true. In our case, neither is true. Our families are far away. We need to work. This feels unfair. Life isn’t fair.
- We were amazed how little support we got on the ward after E went into spica. Nobody showed us how to change nappies. Nobody provided information about how to hold her. Nobody checked whether we had a suitable car seat or pushchair. Nobody gave us operating guidelines about cast care, or things to watch out for. When the nurse came to sleek the cast (put water-repellent tape around the exposed edges to make it more robust and less likely to absorb leaks) she clearly didn’t have a clue what she was doing, and we had to do it again ourselves later, with the help of a youtube video and a friend. It’s a good thing we read up and researched so much in advance, because otherwise we’d be totally in the dark about how to manage this whole thing. So we’re not struggling so much as feeling unsupported by the system which has decided to put her into this situation.
- But above all, the hardest thing is knowing that she’s uncomfortable and you can’t do a damn thing about it.
On the other hand, there are several things for which we are immensely grateful:
- The love and moral support of friends and family. Whether they have been through this (or similar) before or not, people we know and are close to on and offline have been brilliant at sending good wishes, books, cards and texts at all hours, as well as offering support. The problem is, we don’t quite know how to take them up on it. We don’t feel able to say “come and entertain our daughter for a few hours so we can go to sleep”, even if that’s what we really want or need. But maybe we’ll get there at some point. In the meantime, just knowing they’re around and ready to listen to our whinging is good.
- Cbeebies. E doesn’t watch a lot of tv anyway, but it’s been an absolute godsend to know that if all else fails, her attention can be diverted away from whimpering by a few minutes of Sarah and Duck or Show me, show me. Those shows are worth the license fee all on their own.
It’s not all bad, and it will get better, or pass soon enough.
One week down, eight to go. Counting the days.