Oh those blood tests. It's bad enough going for one yourself, but when your child has to have one, it's sleep-deprivingly worrying.
As part of her care pathway, Hermione has to have blood tests every twelve months, and sometimes every six. It so happens that our last one was at six months, as at her last appointment, it was discovered that her thyroid function would require further investigation. Hypothyroidism can be quite prevalent in people with Down Syndrome.
We used to have her bloods done by very kind community nurses, but when Hermione turned three, she became rather physically strong. When she gave the last nurse a kick in the knee when she tried to grab her arm, we knew that we were on borrowed time the community way.
We now attend the paediatric outpatient unit at our local hospital, and the care we receive is specifically tailored to Hermione's needs.
I used to chuckle inwardly when the community way would expect that we apply a big blob of numbing cream to Hermione's inner elbows and backs of her hands, and then wrap her little arms and hands with clingfilm, like sandwiches ready for unveiling at a pub buffet. We had to keep this on for two hours before the appointment.
I'm sure you might guess what Hermione did.
Yep, that's right: she frantically tore at the cling film until it yielded and we both stared at each other, covered in numbing cream, and I hoped it hadn't transferred to my lips as I wondered how I would talk at the appointment at all.
At the hospital, it does take time, but like anything, if it is done properly, it will result in what everyone needs.
Nurse Chloe is fabulous and we arrive half an hour early, so a light can be shone on a protrouding vein and the cream applied succinctly by Chloe. She even has clear plasters to secure the cream: something we hadn't been offered before.
Next comes the marathon of keeping Hermione amused in the waiting room whilst the cream sets to work. I can tell you it's not for the faint-hearted.
There's nothing Hermione likes more than a large room with little rooms coming off it, like a fun labyrinth. And of course, most hospital waiting rooms offer this inviting challenge to Hermione. She invites herself behind the reception desk, the cleaning cupboard and a consulting room, before we manage to grab her, arms flailing (yes, I was worried about the cream too) and we try in vain (or 'vein' if you like a pun) to seat her; my husband Danny frantically trying to find Cbeebies on the tablet and us swearing under our breaths because the wi-fi won't work.
In the end, Hermione settles on a game where she runs up and down from Daddy to Mummy, tiring her little legs out, but keeping her relatively contained within the waiting room. She squeals with delight and I cherish her happy little face all over again.
When even Hermione begins to tire, she decides she will have a snack (the melty prawn cocktail ones are the faves at the moment) and just as she settles with her brimming bowl, we are called back into the room for the blood to be taken.
I feel so cruel taking her snacks away and her little face crumples. We promise there'll be toys in the room, and on hearing the word 'toy' she complies and holds our hands to be taken back into the room.
This is when I feel I've completely betrayed her.
There are indeed, toys in the room, and lots of pictures of Cbeebies characters pinned to the cupboards. But there are also needles and vials and four ladies in aprons and PPE and she begins to realise this is not playgroup.
She begins by eyeing everyone up and the taking a few turns on the office chair by the desk. We tell Chloe and the other nurses she's best when she explores her surroundings first, which is the case for most of our
medical appointments these days. However, I know they have a list of children to see that day, and so we lure Hermione to Daddy's knee as he has the strongest hold to keep her as still as possible during the blood-let.
Hermione intensely dislikes being held during appointments- whether that's for blood-letting or just to be examined when ill. I can fully understand this. I often dislike her having her autonomy taken away and I'm constantly conflicted about the way she has to be physically held in order to monitor her long-term health.
Danny does a stoic job of holding her in a loving Daddy cuddle, whilst her arm is out of sight and they begin letting the blood. I pray they are successful in getting some first time round. I blow bubbles in a frenzy of activity, with two nurses collecting the blood, one play therapist who is providing comfort and encouragement and another student nurse who is observing.
It's a team effort, and through the heart-wrenching cries of Hermione, we get the job done and we are all relieved. As usual, I am weepy too.
We sign to Hermione 'well done' and 'you were brave' and 'finished' and through her watery eyes, we see that she forgives us. I just about forgive myself for betraying her so.
The nurses kindly offer Hermione a sticker for bravery, but Hermione does not yet understand the concept of reward stickers and sets about throwing it back in the faces of the nurses. This happens every time when she is offered this, and I take pity on the kindness of the nurses and every time offer to take the sticker for her. I've lost count of how many jackets I now own which sport a 'brave' or 'well done' sticker with a picture of a lion or penguin on.
We praise Hermione to the hilt, and she bounces back and when we prompt her, she says 'bye-bye' to the nurses and they all coo and say 'aw, bye Hermione!'
Danny and I congratulate ourselves on a win because the blood was got and we are still standing. Just.
We know that our appointments with Hermione could potentially always be like this: painstaking, planned to the nth degree and lengthy. But when done well and tailored accordingly, the medical professionals get what they need, and we are safe in the knowledge that Hermione's long term health is being looked after. We're so grateful to have nurse Chloe and the team to listen to us about how Hermione responds and how best to handle her in these stressful situations. It makes such a difference to our life with Hermione.
We are exhausted after a day like this, but it is worth it for our pocket rocket Hermione.
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