Update for 2022 – Hospital and stuff

I thought I’d give a brief update on my year so far, 2022, as I’m sure some people think I’ve vanished into another dimension.

I feel I am now at a stage where I can finally update this post. I’ve added more information about what happened back in 2022. (It’s now 2025).

The following is directly from my medical notes

20 Feb 2022 00:00
Immunisation course to maintain protection against SARS-CoV-2 (severe acute respiratory syndrome coronavirus 2)

02 Mar 2022 13:19
Infected tooth socket

07 Mar 2022
Dental swelling
Seen by ambulance crew

21 Mar 2022
Abscess NOS
Seen by ambulance crew

22 Mar 2022 00:00
Seen by ambulance crew
Emergency hospital admission
Seen in accident and emergency department
Sepsis
Seen in maxillofacial unit
Incision and drainage of abscess
Left submandibular abscess
Examination under anaesthesia

25 Mar 2022
Discharged from hospital

26 Mar 2022
OOH report
Postoperative complication NOS

29 Mar 2022
Seen by ambulance crew
Tongue swelling

30 Mar 2022
Arrival by emergency road ambulance
Seen in accident and emergency department
Allergic reaction
Systemic anaphylaxis

At the end of February I started to get tooth ache. I assumed it would just pass, as it usually did. I had received a letter from the NHS dental service saying they weren’t seeing anyone due to the pandemic. So I had nobody to call.

This time the pain just got worse and worse.  I started taking extra paracetamol and Ibuprofen, this didn’t touch the pain. At this point I reluctantly got Mum to call my GP. He told us it was likely an abscess and prescribed antibiotics.

The pain continued to get worse despite the antibiotics. By this point I couldn’t sleep as the pain was too bad and I could barely drink either. We decided it may be time to call an ambulance, as my temperature was also high, along with my heart rate.

I can’t remember exactly what the ambulance crew did now, it’s all a bit vague. I think they gave me pain relief and did a general check over. Hospital may have been suggested too. This was at the time COVID rules were just starting to be lifted though and the virus was still overstretching hospitals.

There were many calls to and from the GP surgery over the following days. I was prescribed a different antibiotic, put on oramorph, Benzydamine and eventually meloxicam and Naproxen. I also tried having ice packs on my face and doing anything I could to try to just ease the pain for a few minutes.

Nothing helped, I was still getting no sleep and was in constant agony. The side of my face was also swollen and I was getting earache on top of everything else.

After three weeks I couldn’t take the pain any longer and was becoming dehydrated, so we called another ambulance. The crew did what they could, well aware that hospital would still be risky. Luckily one of the crew knew the rapid response team and was able to get them on the phone.

The rapid response team were able to get out that night. They put me on a drip and gave IV pain relief. Then they regularly visited to check on my condition, do tests and swap drips. Anything to try to keep me out of hospital.

Unfortunately, despite their best efforts, things didn’t improve. A member of the team took a blood test and rushed it through. We weren’t expecting the results until the next day, but at 2am he knocked on our door. After a hushed conversation with Mum, he came into my room to talk to me.

The news wasn’t great. He went through the results and said if certain levels had been half of what he was seeing now he would be strongly advising hospital. With my levels he wasn’t asking anything, he was telling me, I had to go to hospital now!

I didn’t realise at the time, but he had realised that my tooth infection had become sepsis.

Ambulance crews were stretched thin, so it took a while to get to the hospital. The queue of ambulances at the hospital was long, but somehow my ambulance crew managed to jump it. After having the mandatory COVID test I was allowed into A&E.

There wasn’t actually any room in A&E itself, so I was left in the corridor outside. I wasn’t overly bothered by this, lack of sleep and pain had me at the stage that all I wanted was for someone to help. I was assessed by nurses, and then someone from the maxillofacial team, whilst still in that corridor.

The lady from maxillofacial seemed pleasant at first, saying they would drain my abscess and take out any infected teeth. Everything changed when I said this operation had to be done under local anaesthetic. I explained why, but she still wanted to put me under. After raised voices, surprisingly I still had some fight left in me, she retreated off to find another member of her team.

I was finally given a bay in A&E and connected to various monitoring equipment, while I waited for news.

The next person to visit was the anesthetist. Initially he was repeating what the maxillofacial team had said, not really getting the risks of general anaesthesia for someone with Duchenne. Then I mentioned that I also had cardiomyopathy. Everything suddenly changed, there would be no general anaesthetic. He would be there monitoring me though, and should things get too much I could have Ketamine. I told him I really didn’t want that.

Next another lady from the maxillofacial team visited and explained what they would be doing. 

They would cut an incision in my cheek, then use suction to remove any infected fluid they could, this could cause some nerve damage. After this, if I was up to it, they would extract some of my teeth.

That afternoon I was wheeled into surgery. Mum had to wait outside, so we said goodbye through tears. Both of us were not quite sure if I’d be coming out alive.

The surgical room was as you would expect, sterile, green curtains, monitoring equipment, bright round lights on wheels and people wearing scrubs.

The local anaesthetic was administered and we waited for it to take effect. The anesthetist carefully monitoring his machines. 

Then it began, the cut through my cheek, I don’t remember it hurting too much. After this they inserted the suction tube, that didn’t feel great!

For a while I was able to bear it, with everyone saying how well I was doing. It wasn’t long though before they could see I was struggling, this was painful! 

Then the anesthetist asked the question he had been wanting to ask. While I was under local anaesthetic, exhausted, in agony and susceptible, “Do you want some pain relief?”. I replied yes, but not much please.

The Ketamine flowed through my body and my world changed! 

I could only see vague shapes of the people around me, everyone sounded tinny and distant. I couldn’t remember who I was, or why I was here. It was just here and now, no past, no future. 

At this point I really wanted to pass out, but I instinctively fought it. Despite hearing voices from the surgical team saying that it was okay if I did.

Time had no meaning, had I been here for hours or minutes? I could still feel the pain in my face and what they were doing though, there wasn’t any relief from that. How long would it go on?

Was I breathing, was my heart beating? I couldn’t feel the in and out of my breaths, or the gentle rhythm of my heart. It felt like I wasn’t in my body, was I dead? I felt far away, except for that pain.

Have you ever watched a film about alien abduction? Think of the room on the spaceship where people are taken, strapped down to a table and experimented on. This was exactly how it felt and looked to me. Although I did know I wasn’t on some alien craft.

Then a distant voice asked, are you okay for us to carry on? My answer was no. I couldn’t take any more of this, not just the pain, but this bad trip too. They knew it was too much as well and stopped without any argument.

I was taken to recovery, which was all a blur. They had lovely lights on the ceiling in there I remember, with pictures of clouds on blue skies shining through. After doing some tests, they let Mum in.

On seeing me she asked how I was, through streaming tears I told her “they gave me Ketamine”. I didn’t say more, I couldn’t. I’ve only really explained what happened to one person since then. Being given Ketamine was one of the worst experiences in my life.

I spent a few days in hospital. A drainage tube was attached through my cheek and I was put on drips filled with painkillers and antibiotics. It wasn’t a great time. I won’t bore you with details, but the hospital and staff were struggling at that time, and as with everywhere patients were getting neglected.

Again without Mum staying by my side the whole time, except during that surgery. I am not sure I would have made it through alive.

I got home and for a day I was doing okay. My Aunt was staying with us again so we had extra support and love.

The next day things went suddenly downhill. My tongue and throat started swelling up, another ambulance ride to A&E. I was sorted and released the same day. Post-operative complications are written in my notes.  An allergic reaction to the antibiotics I’d been given were the reason.

I lasted a couple of days at home this time. Then in the night I sat up to take my medication and have a drink, but something happened. I could feel something was wrong, my throat, my tongue, I shouted “call an ambulance now”. Everyone panicked as it was not like me to say I needed an ambulance. We rang 999, two ambulances arrived with their defibrillators and emergency equipment. They rushed into my room. I was still just barely responsive, so luckily they didn’t need to use that emergency equipment.

I was then rushed to A&E again, with blue lights flashing.

The doctors and nurses in A&E could see something was wrong. I was having to force my throat open to take shallow breaths, I could barely breathe or talk. For hours I lay there struggling with each breath. If I lost concentration just for a second no air would come into my lungs. I was positioning my tongue and forcing my throat to open just enough to get some air inside me. Remember I’m on a ventilator 24/7 already, so if I’m struggling to breathe, then anyone not on ventilation would likely be dead.

I wasn’t treated until they switched over to day staff. When the day doctor arrived I was immediately given adrenaline. It worked almost instantly. I wasn’t perfect but was breathing without fighting for every breath. Shortly afterwards I was given another injection and felt almost normal again.

They kept me in for the day, did some blood tests and let me go home, with yet another antibiotic. This time my notes actually recorded anaphylaxis as the reason for admission.

Throughout this Mum was amazing, as was my Palliative consultant. He would ring every day at first to see how I was and liaise with my GP. He visited after I was back at home and said he didn’t know how I could be so strong. That he didn’t know anyone else who would have survived this.

I am now waiting to get to Guy’s hospital, as they have a specialist dental team who can hopefully help me.

It’s not been a great year, I’m still exhausted but I am recovering. I haven’t been out of bed in two months and am not sure when, or if, I will be physically able to. But then again last week I wouldn’t even have had the energy to write this post.

Please also see the following post for more updates Update 2023

(Back to 2025 me)

I did eventually get back to some kind of normal. With a lot of help from amazing carers (thank you Kate) and family. I also had a former carer visit after she heard I’d been in hospital, Abi. She gave me hope and another reason to fight, saying she would visit when I was up to it and we could go on a trip together (this sadly never happened, but still it helped me fight). 

Things weren’t perfect for a while and still aren’t. If I was driving down the street when an ambulance passed with sirens on, I would feel a sudden fear. I would see that surgical room in my mind, like I was back there. Panic would rise and tears would fill my eyes.

I also visited the science museum in London a year or two later. They had a hospital exhibition on one floor, with a replica surgery room. I saw that room, with the surgical table, lights and curtains, then fled. Straight to the elevator and down, then rushing outside. 

I don’t quite understand why these things happen, or why I still tear up when talking, or sometimes even just thinking, about that time. I’m still not quite over it I guess.

Related posts:

Day One – Two Weeks in Hospital R.I.P. Aunty Cyndy 1943 – 2015 The Next Few Days – Don’t Fear the Reaper