Reader discretion advised: This post contains talk of surgical procedures.
I was sitting in the bath when I realised that it was 3 months exactly when it was one of the worst couple of days of my life.
Sunday 22 March 2020 (also Mothers Day)
Lexi was one week post op following the removal of her appendix and throughout the week she had been getting worse. Her stomach was still really distended and she had been vomiting dark green since Thursday. The colour was unlike anything I had ever seen; think pureed spinach. It would have been incredibly impressive if this was a horror film.
In the afternoon, we were wheeled down to xray to see if they could find out what was going on. They said that they couldn't see if there was a blockage or not but the best thing to do would be to sedate her so that they could put another NG tube in. They desperately needed to aspirate to get rid of the bile as her body wasn't able to process it in the normal way. They also needed to put in 2 more cannulas as she had fully caught onto their tricks and was not having any of it whilst conscious. Her veins are starting to fail too so they were so incredibly important. Whilst they were putting all of those tubes in, they thought that they may as well put her catheter back in too. Well, why not! At this point, what is another tube?
She fought that sedation HARD. In that moment, I saw exactly how strong she was. After what felt like forever, she finally drifted off and they set to work. It was like a well choreographed dance; the 2 doctors and 3 nurses set to work on their specific task and soon enough they were done. It was time to get the NG tube to do its thing.
One of the nurses, Magda, used a syringe to aspirate the tube. It filled up immediately, she got another and then another, and quickly decided that it would be better to collect it in a pot as there was so much. Magda got the pot and set the tube to drain freely. It poured out. It was like a tap had been turned on and it was running freely. It kept running, and running and filled up 2 pots to the very top. In total, they aspirated 600ml of bile which was just sitting in her little tummy. 600ml. I am still really shocked.
I felt such relief for her. Because we'd had numerous failed attempts at keeping the NG tube in throughout the week, we had not gotten to a point where she would feel better. It was at this moment, I knew what I needed to do. It was going to be absolutely awful, but I needed to stay up all night. Literally, sit next to her to ensure that she didn't pull out the NG tube again.
So that's what I did.
I had a roll of plaster, and I had some tubigrip bandages. I folded over the ends, stuck them down and made her little boxing gloves so that she couldn't use her fingers. I kid you not. This happened.
The sedation wore off at around 8pm and she was going mental. She hated having all the tubes in. I mean, of course she did. I can't imagine how horrendous it must have been for her. At this point she had the NG tube, the Pic line a catheter, 2 cannulas, a blood pressure cuff on her leg and a heart rate monitor on her toe.
Each piece of equipment was doing such an important job, but because she was effectively tied to the bed it meant I couldn't do anything to comfort her. It was heartbreaking. She settled down again but it was going to be a long night to say the least. I was absolutely terrified that she would pull the tube out. I would jump at every little sound or moment she made.
The last 3 times this happened throughout the week, I had not coped with that well. I think because I knew it had such an important part to play but wasn't able to start to do its job.
The first time she pulled it out, I had to hold her head still while they put it back in and then I had a panic attack. The first one I've ever had and it was AWFUL. I thought I was going to be sick/die/faint at the same time. Which of course, made me absolutely terrified the next time she had the NG tube put in, and then subsequently pulled it out because I knew I'd have to hold her down again and would definitely have another panic attack.
Despite my best efforts with the boxing gloves, she managed to partially pull the NG tube out. I was holding it in and I just shoved it back down there and stuck some more tape on. This happened probably three times. Each time, I'd shove it down, and stick it down. That poor girl. She looked ridiculous but sometimes that the price we have to pay.
On top of this, she started to get the strength to try stand up and she was writhing around. To stop the tubes getting pulled out/tangled up, I held her under her armpits to try to calm her down and not tie herself up. By this time it was only 22.30 and I was starting to feel so overwhelmed. I begged the nurses for help but they said there wasn't much that could be done. I begged them to sedate her but they said that she wasn't able to have anymore until 4am. I knew that I wouldn't be able to keep going in that state, but I had to. I needed to for Lexi.
They did bring the Doctor back pretty quickly after this point and gave her some morphine which settled her until the morning parade. During the rounds they said that she would need to have another ultrasound to have a look for any pockets of infection.
The original surgeon, Tristan, who we saw when we were first admitted, was so kind and visited us every morning to see how she was doing. The moment he came into our room was when she conveniently started standing up again. It was like she knew what she needed to do. His face said it all. He looked very concerned. He said he was going to call his boss.
This is when we met the wonderful Mr Ram. He said he was about to go into surgery but she was next. They needed to find out what was happening with her. He prepared me for all the different findings, all the different outcomes but basically, they had no idea what they would be finding other than some kind of blockage. He couldn't tell me how long it would take. He couldn't even tell me if she would be ok after. Until they looked in there, they had no idea. Which was terrifying.
I signed yet another surgery consent form and went through all the risks with the surgical team and the anaesthetist. This was her third operation in a week but this one felt scary to me. Andy arrived and we sat and waited for our turn to go down to theatre. It was surreal. We decided not to tell anyone and save them from the burden as none of us knew how long it would take. The porter arrived and drove us down to theatre, and I was on the bed with her whilst Andy walked along side us. We reached the theatre and Andy waited in the parent room whilst Lexi and I continued on.
We went into the anesthetic room and there were some familiar faces from the last two operations; they were amused by all the tape on her face. She suddenly looked so small in her bed. They lifted her off of the bed onto another and I had to reassure her that everything was ok whilst they held a mask with the general anesthetic to her face. Of course, I had no idea if everything was ok and it was so scary.
It took a little while but she was finally out and I was quickly ushered out the room. I knew the deal by now from a practical point of view, but I was leaving that room not knowing if I'd see her again. I went back to the parent room to see Andy and to collect a beep. Mr Ram popped in to see us and told us to go out for a long walk as it will take a long time. He would beep us when she was waking up in recovery.
Armed with our beep, we headed out of the hospital for a long walk, which to be honest, we really didn't want to go on. Neither of us know Norwich; so we just walked pretty aimlessly. I felt sick and I hated that Lexi was so far away from us. It didn't feel natural to be leaving her behind; it felt wrong.
We had been out for a couple of hours when I wanted to go back. What if something had happened and the beep had lost range? I was panicking. We headed back and as we approached the hospital, we got a beep. Of course, I was irrational and was convinced that we'd been beeped ages ago. What if something bad had happened?! We had never walked so quickly.
We waited in the parents room again and Mr Ram came in to see us. He sat down and said "Firstly, she is going to be ok" and then paused "but if we had left her for any longer, it would be a very different story" He explained that they had found the blockage and it had been causing her small bowel to tear open and the tissue was starting to die. He said that she would be in surgery for a while longer yet but he wanted us to know that she would be ok. He told us to go back for a walk again. I have never felt such relief.
We went back to our room and I had a shower. We had our dinner from the trolley and we waited for a bit longer. It had been another 2 hours or so and we were beeped again. Back to the parents room. We watched Boris on my phone on sky news announce the start of lockdown. It was turning into such a surreal day. All of us being at home felt like absolute heaven at this point.
Mr Ram came to give us an update. He said that they had finished the procedure itself, and would start the process of cleaning up now. He said that over 50cm of necrotic small bowel was removed. He said that she wouldn't need a stoma and she wouldn't suffer any after effects. He said that he had tried his best to make the scar as small as possible but once they'd found the dying tissue, they had to make that the priority. He said it wouldn't be long now, and we would see her. He sent us away again.
It was at this point we decided to call our parents and tell them. I facetimed my Mum and I think saying it out loud made me realise how upset I was. How hard that day had been. I could hardly get the words out because I was crying so much. Partly because I was relieved but partly because we were talking hours between life and death.
We decided to go for a walk but stay near to the hospital. We found a little route out of inpatients, round the wards, through the car park and back into outpatients. We did this route hundreds of times. We talked about how we felt so relieved. We cried at how close we'd come to losing her. We talked about all she'd been through. We talked about all the toys we were going to buy her when we got home. We cried some more. We walked and walked and until it was dark. One more lap we said. OK, maybe one more. What if something bad had happened after all? One more lap. We walked 11km of the hospital that day.
Finally, the beep we had been waiting 9 hours for. We could go to see our girl. They collected us from the parents room and took us to recovery. In addition to all the tubes she'd had put in the day before, she now had an oxygen mask and a epidural. She looked so so tinyl and pale in the bed. She was drifting in and out of consciousness; they said she was comfortable. At least she wasn't in anymore pain. The epidural would stay in for another 4 days. I was crying so much. It felt like it was over. It really felt like we had finally helped her. The porter and a doctor wheeled her back to the HDU and I suddenly realised how tired I was. How drained I felt. Mentally and physically.
The lockdown had literally come into action and so only one of us could be there. Andy told me I should go and he had booked a premier inn locally for me as I didn't have to drive the 90 miles home this late and this tired. Thankfully, they were still open that night despite the lockdown and I arrived feeling incredibly grateful just after 11pm.
Looking back at this experience now, I can see how traumatic the whole experience was for us all. Over the recent weeks, I cannot stop thinking about it. Yesterday afternoon, I had to go to bed with a migraine for seemingly no reason. Last night, I had a really vivid dream about being back in the hospital. I was asking for all the doctors and nurses by name but I kept being told they didn't work there anymore. They had no record of her stay last time and I had to go through it all in detail with them incase they did something wrong.
I discussed this with Andy this morning, I think that now the world is starting the process of unlocking, my brain is too. Going from the hospital into a pandemic lockdown caring for a poorly child, I didn't have time to think about how it had effected me in great detail. Andy and I did have lengthy chats about what had happened but we didn't really address our feelings. I think that I felt such relief to be home that I didn't consider how it had affected me. When I have talked about how we nearly lost her to some people, it has been met with cries of "Ohh don't think about that!". I think they are trying to be helpful, but unless you've been told your child could have died then I don't think you realise how much you do think about that.