Surgery

Taz had surgery recently. It was to replace her VNS (Vagus Nerve Stimulator, you can read about what this is and the first time it was fitted for Taz here). Obviously, I had to tell people this was happening, but every time you mention your child is having surgery you get a look of deep concern (understandable) – I however felt compelled to respond in a way that played it down. Because it was ‘just’ a day case surgery, ‘just’ routine and ‘just’ replacing her VNS unit. So this was my external, and internal narrative for the weeks preceding it.

The day came around. My mum and I went with Taz. Taz’s dad was very happy to come but I pushed for him to stay with Big Sis, just so she felt supported and not abandoned, as it happened in half term, not on a school day. We got the train (an hour instead of two in the car). Prior to the appointment I was informed only one person would be allowed on the ward to accompany Taz. I informed them that she requires 2:1 care in these situations. They said it would be at the discretion of the senior nurse at the time. No. I explained politely but firmly that we would both be attending. We were told Taz needed a Covid test which we got, exactly 3 days in advance as requested. The surgery then got moved by 5 days. No problem, another Covid test, all good. When we eventually arrived at the hospital blinking under the blazing lights at 7.30am, we were asked for confirmation of the Covid test result. At no point before was this mentioned, in fact, at both tests we were told ‘no news is good news’ and they’d be in touch if it was positive. What followed was 30 adrenaline flooded mins of me calling my husband, trying to get him to look the results up on our local hospital’s patient system (the systems do not talk to each other so the hospital we were in could not get it) all the while Taz was utterly distressed having realised she was trapped in a room and that the day out on the train had not delivered. I could not comfort her as I was stuck on the phone while phrases like ‘no results, no op’ swam around in my head. It didn’t get the day off to a great start. It got sorted and the day trundled on. After a briefing from the neurosurgeon (I always feel like I am meeting some kind of celebrity, I am that in awe) she went down to theatre and was put under general anesthetic. This bit was not as hard as I had found it in the past, and the team were just brilliant.

My mum and I got a coffee and spent the first hour chatting, shoulders down with relief. I spent the next hour with my heart rate incrementally rising as the minutes ticked by – it was meant to be about an hour but it was nearer two. That bit was hard. I poked my head around the nurses door to see what was going on as they’d just received a call to say all was fine and she was ready for us. I went to the recovery room to see a very woozy Taz. This did not last long. When we arrived back in the room she woke and, for want of a better phrase, went crazy. She bucked and kicked and thrashed her little body around. Terrifying us with the thought of her damaging her freshly cut wound. This continued and she whacked her head, arms, legs on the side of the bed, arching her back, screaming and shouting. My mum and I did our best to contain her and stop her bucking herself onto the floor while sustaining kicks to ourselves. It was so distressing. In the end I had to call for help. Two nurses came and the four of us tried to minimise any injury. One went to sort out a bed with padded sides. She then slept, woke, thrashed, slept, woke, thrashed before sleeping properly. The whole thing must have lasted about an hour.

Now. Please refer to the first part of this blog where I had to leap over two hurdles to get my mum into the hospital with me. I refused to accept only one person allowed (no-one asked if my severely disabled child may require more than one carer) and I also refused to accept the uncertainty of not having this confirmed in advance. I was able to do this as I am confident and have a career where I have have learnt the power of communication and advocating. Now imagine a family where the parent may not have been able to speak up, for any reason, perhaps English not being their first language, perhaps being less confident, or intimidated in medical situations or unsure of their rights. That parent or carer would have gone through that alone. This is an accessibility issue driven by Covid rules. Hospitals need to consider these impacts and ensure families’ needs are met.

Back to the story of the surgery. From this point things got dramatically sunnier. Taz woke properly and then wolfed the most delicious keto meal that the brilliant ketogenic dietitians at the hospital had specially prepared for her. After that, she pulled off her hospital gown, grabbed her shoes and coat and marched towards the door. I went to the nurses office and informed them that we’d need to leave now or Taz would likely cause herself an injury. Presumably based on what they’d seen earlier, the discharge forms were whipped up faster that I’d ever seen. Before we knew it we were out, in the sunshine, Taz delighted as she hopped in the back of her first Uber. Even the brief horror of a two hour wait at the train station was quickly erased as we walked in the sunshine, found a cafe and stopped for half an hour while Taz contentedly sat in a plastic chair, in the sun like a contented cat, eating grated cheese from a pot, strand by strand.

She loved the train journey home. It has been a rough few weeks of recovery with Taz clearly knocked by the anesthetic, but she seems to be out the other side now. Her wonderful epilepsy nurse went to school to take off her dressings and let me know that Taz helped. She described the wound as beautiful (I love how medical people do that). The thing is, it is. It represents such care, skill and frankly privilege that we live in a country where Taz was just given this incredible input and we are blissfully unaware of the cost (guessing these things don’t come cheap). Lucky her, and us.

Four days after the surgery I had a relatively short but intense episode of anxiety. It was triggered by something else but I now realise it was a response to the hospital trip, which I’d downplayed both externally and internally, leaving very little room for me to feel all the stuff I needed to feel at the time. Another lesson learnt.

Pictured is Taz chilling out under a rainbow while we waited for the train.