Only a mere six months earlier than expected! Clara has achieved the unthinkable – but then again, when hasn’t she?!
We’ve known this ‘aim for home’ date for a few weeks now but I’ve not been brave enough to share it. Just in case.
You see, Clara doesn’t like the D word (D is for discharge). She doesn’t mind the H word (home) because she’s been there before for a bit but knows she goes back to the hospital after. But the D word has caught us out three times now: once on Christmas Day at 11pm when all bags were packed and I was still in the women’s centre (she ended up in High Dependency); next on New Years Day (she ended up in Intensive Care); and now this time.
This attempt at discharge didn’t quite execute according to plan but the HUGE difference is it worked.
WE ARE HOME.
This time around, the car was packed on Tuesday but a last minute decision to do an X-ray on Clara’s new Hickman line resulted in a minor delay. The line hadn’t been drawing back blood – the same problem as her first line which we had just replaced. The X-ray showed a very small blood clot and her line butted up against the lining of the vein at the tip of her heart. This meant we could flush her IV fluid in fine (the most important thing, the purpose of the line), but we couldn’t draw back the line block we use daily when Clara’s unplugged that fights infection in her line.
We also can’t get blood which we need to check her nutrition levels – ie the contents of her PN prescription. We tried putting a blood clot eating solution down her line, giving it overnight to clear but it didn’t work. We stayed another night (Wednesday to Thursday) and we tried a 24 hour infusion of the same solution – this too didn’t work. This suggests that any remaining blood clot isn’t the issue, but being butted up against the wall is. I don’t know the solution to this, but we’ll be back for another linogram X-ray next week.
But – WE ARE HOME. HOME HOME HOME HOME HOME.
And actually, the minor delay has proved worth it. In the last few days, Clara has achieved so much:
> Having required two nights with blood clot busting solution sat in her line, Clara has had to be off PN since Monday night. She’s proved she can handle two consecutive nights off – and she’s allowed to continue that going forward! That’s two consecutive nights on top of the Saturday night she’s allowed off! Three nights a week!
> Clara sat up for the first time unaided, just for a few minutes but she did it!
> Clara now pushes herself up when she’s on her tummy and rolled over for the first time! (Front to back)
> Clara got upset when she saw me eating (hilarious!) and milk wouldn’t cut it, so we offered her banana and she wolfed it down, followed by Apple & Blueberry purée.
We even had a brilliant leaving party Monday night with Dominos pizza, snacks, fake wine, and some of our closest friends (who just happened to also be working their shift that night). We’ll miss our nights like these!
So what happens next?
Clara will require ongoing medical care for many years. She’s still on parental nutrition that requires lengthy sterile processes, both morning and night.
She takes four different types of medication, each with a different number of daily doses, at various times of the day.
We need to be careful with Clara’s gut – it may be proving to be brilliant but it’s vulnerable. A simple cold can knock her back as her gut takes the blow. A cough or a runny nose can make her vomit as the excess mucous sits on a tummy full of PN overnight – which then easily wants to come back up.
We’re still ongoing with audiology and the investigations there. Our next appointment is a week away and will be a behavioural response test. The current decision is not to rush into hearing aids until we know more.
We’ve got lots of follow up appointments booked in the next few weeks to carry on Clara’s care.
For now, we sit back at home, relax (I get to sleep in my own bed again!), and help Clara grow into the most humble, thankful, happy, polite little girl you’ll ever meet.
Thank you to every nurse who has looked after Clara. To each of you who encouraged me to push her, figuratively with her development or literally with her pump stand down the corridor.
Thank you Mr Lee and Natalie. Our most incredible surgical team who truly gave Clara her life back.
We will always be forever thankful we met each and every one of you.