Saturday, July 20


For the second time in few weeks, we have waved goodbye to hospital and thankfully shut the front door and collapsed on the sofa back home (in front of Maisy Mouse: I now know most episodes off by heart).

We are now around 72 hours post-op and things seem to be getting better. So far we are infection free and she is still willing to eat small amounts of Quavers. Right up until this morning, Wriggles was still so groggy, tired and weak that she couldn't sit up by herself but today she has been regaining her strength and much more like "my" Wriggles. Just like last year when she had her operation to place the feeding tube and run tests, once she came around she would scream if she was anywhere but my lap. I think I had one bathroom break in 12 hours which was a quick dash to a screaming chorus in the background. It doesn't get easier seeing her in so much distress. As they put her to sleep with the gas, she was still screaming "BACK! GONE! BACK BACK BACK!" as her eyes rolled back and she gave in to the anaesthetic. It must be so horrid to not be able to fully understand a situation and be subjected to strangers doing horrible things to you, even if it is to ultimately help you. Thankfully they got me very promptly as soon as she was in recovery and I was able to hold her close not long after-and not let go for hours!

This time was probably the first time I've felt a bit let down by the hospital. Normally I think our hospital and the trust is the bees knees: it's not perfect and there have been several incidents that has annoyed me, but compared to many other people, the Great North Children's Hospital is pretty damn alright. The first thing was that in recovery they didn't have the equipment to attach a syringe to a feeding tube to give pain relief (you need either a certain type of syringe to screw on the cap and sometimes, an extension set). Whilst she had had some level of pain relief in theatre, she was clearly in a lot of pain still and had been written up for further medicine. Unfortunately, she couldn't have it because there was nothing to give it to her and her swallow isn't safe enough to take it orally (which is in her notes and I had told them before she went in. Several times). The second thing was that despite staying overnight and for the best part of the day afterwards, we never actually so much saw let alone spoke to a doctor after the operation. There were plenty about, but as the hospital is split up into lots of departments and specialities, everyone claimed she wasn't "their" patient so wouldn't add to their ward rounds or check in. As it was, she seemed ok, but I would really have appreciated even a junior doctor checking in, doing a quick once over to confirm she was ready for home. I, and nurse in charge, suspected that as strictly speaking we were there under ENT, who operate from the sister hospital on the other side of the city, the fact was no one could be bothered or had time to come back across to do the necessary checks that healing was underway. After 24 hours, Wriggles was struggling to hold down much in the way of food or drink but mainly because she was so distressed by the constant observations the nurses had to carry out. Once she started crying, she couldn't stop before being sick again. In the end, the nurse agreed to discharge us on the basis that we were covered by community nursing and would come back in if things deteriorated. At the point we went home, we should really have stayed in longer but luckily the nurses agreed that seeing if Wriggles calmed down at home to at least keep more feeds (and medication!) down would be better for her and thankfully that was the right choice.

Every time without fail I forget how temperamental her stomach and digestive system is to any change, let alone anaesthesia, so we are still struggling to reintroduce feeds and get them to stay down long enough to start digesting. I keep telling myself that the most important thing is fluids as if we didn't have the tube, it is entirely likely she may not be wanting to eat much at all anyway so it is drinks, drinks, drinks. I thought I'd cracked it last night with a decent overnight feed, and woke up to find the extension to the new feeding button had somehow come off, thus feeding mainly the mattress with formula and not my daughter. That rather set the tone for a fraught morning not helped by the fact the after being royally fiddled about with, Wriggles does not want anyone doing anything to her. Unfortunately as we have changed feeding tubes, the new ones needs an extension clipping on to administer things and Wriggles does not have the understanding that if she is to feel slightly less rubbish, I need to do about 5 seconds of fiddling in order to administer pain relief and a drink so she doesn't dehydrate (side note: thanks a bunch, heatwave for making sure I need to be even more diligent about shoving as much liquids into my child that she doesn't not want to absorb). As understanding and patient and empathetic as I am trying to be, I had a moment where I slightly lost the plot this morning. Leaving Cbeebies to babysit while I had a shower and fired off a pathetically sad email to my best friend helped as did eating an entire pack of chocolate biscuits (it was a very small pack. Ish) and me feeling a bit more human and maternal by the afternoon.

Poorly children are draining. On top of that, I am absolutely terrified about post operative bleeding, which would merit a 999 call and almost certainly a second operation, and every time Wriggles is sick, starts screaming or coughing a lot I am on knife-edge. One big positive (I think) it that her breathing at night is so much quieter; the immediate downside to this is that it is so quiet I find it hard to relax and sleep myself, safe in the knowledge she is still breathing correctly. Nearly 3 years of a child who sleeps like the sound of a very fidgety hedgehog with a blocked nose has made me very reassured by noise and I am not quite used to this new silent model. What didn't help was that in recovery, the surgeons requested 24 hours of apnoea monitoring before discharge. On the ward, the apnoea monitor kept playing up and going off every 5 minutes so everyone got very fed up and turned it off, deciding to rely on the oxygen saturation/heart rate levels instead. I think my mental state would have definitely benefited from the requested apnoea monitoring to give me some reassurance. Even when she was a baby on oxygen, I never seriously thought about having an oxygen or apnoea sensor at home as I thought it would drive me barmy and fuel my anxiety, but for the first time I am wondering the merits. 

Onwards and upwards. As I keep saying every half hour to myself!

Wednesday, July 17



I can't sleep. In two hours I will get up and turn your feed off and swap it for just water.

At 7 o'clock I will get up again and quietly turn that off and administer your morning drugs.

Half an hour later a taxi will come and we will drive to hospital.

At 8 o'clock we will arrive at Ward 8, Surgical Ward.

At 9 o'clock I will hand you over to the surgeons who will put you to sleep. I know you will resist.

At 10 o'clock you will wake; groggy, dazed, confused, hurting, in pain.

It is a relatively minor procedure; adenoidectomy and tonsillectomy, tube change and endoscopy.

I can guarantee you will not see it that way.

Children your age aren't creatures of reason and rationale. You are not built to know about the pros and cons of surgical proceedures.

All you will know and care is that it will hurt. And that I brought you there.


I just crept into your room; serenely sleeping and snuffling away. Your perfect face made me feel a clumsy betrayer as I pictured your face contorted in pain and confusion less than 12 hours later.

I'm sorry in advance. So sorry.

Please remember today: the sand, the sea. The sandcastles, Quavers on the beach. Paddling in the North Sea. Throwing rocks at the sea and laughing hysterically as it "ate" them up and growled "thank you very much." Remember the freedom, the rocks, the little pools of water. Remember the sunshine, the standing on the edge of the shore.

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And I will remember too, and grasp with all my memory to your little giggles that rang through today as I try to comfort your cries that I know will ring through tomorrow. 

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I'm sorry.

Saturday, July 13

Sorry, Wriggles

Some days I long to see you run off as if in flight, with the crowds of other children.

Some days I long to see you slurp up a drink noisily and blow bubbles through straws.

Some days I long to just go out for lunch with you and order something off the menu for you to eat: with pleasure. No syringes.

Some days I long to hear your voice join the little words you are learning.

Most days I feel at peace with how things are and focused on your abilities.

All days I feel so heartbreakingly proud of you (except maybe, when you are badgering me for Maisy Mouse DVD again).

And some days I feel bone-crushing guilt and sadness that I couldn't "fix" things for you.

That I can't wave a magic wand.

I feel angry we have to rely on so many people and are only adding to that team, to help you achieve what comes so naturally to other people.

When you cry during physio stretches, I am crying with you. I've just learnt to have invisible tears.

If I had a magic answer, I promise you I would have used it.

You are so good; so happy really. So full of beans, so scornful of fear.

So why do I feel so sad and guilty that I have somewhere failed you? 

How is it possible to feel so grateful, thankful and elated and simultaneously so muddled, confused and aching for this life you never envisaged to go back to being hidden?