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!

1 comment:

  1. I'm glad to hear the surgery went well and so sorry your hospital experience was so poor. Can I suggest a complaint made through PALs for this? I find it quite shocking that for any child, much less one with Wriggle's complications, was not checked by a doctor and that no one was willing to quickly look her over. Even more so that a specific apnoea monitoring request was dismissed after a short time and even that you're now dealing with so much in terms of her struggling to eat/drink and vomiting post surgery. There's no way she should have been released if you're having this much difficulty! Please, please complain Amy, whatever good treatment you've had on other occasions, this is appalling! Hugs for strength in the battle x