After some time I was able to sit in a less supported wheelchair, the rotastand which I used to help me transfer seemed to be doing my core some good. It’s funny thinking about those days now. I would be sat upright and in order to show someone how much thought and effort I had to put into sitting, I would tell them to watch what happened when I would relax and I would automatically flop to my left but over time, the amount I flopped over was becoming less. I remember in my early days of rehab this was still happening because my physiotherapist examined me in my induction to the unit. When sitting I wold flop to the left and when standing if my feet were together, I would fall to my right. It was really bizarre so I always stood with my legs quite far apart because the wider my base, the more stable I was and felt. My head was, and it still making me feel like I’m floating sometimes. I really can’t explain it but it also feels like the opposite at times.
When I was in Royal London my daughter was more used to seeing me which was lovely and I thoroughly enjoyed watching her twirl about and mingle with nurses. Her chatting was relatively less because she was in an unfamiliar setting but eventually she caught on that mama was in “huptal” and if anyone was leaving our house she’d ask them “where going?” and wanted to put her shoes on assuming they were off to see me. She still didn’t want to come near me, if she was tired and needed a nap she wouldn’t even want to be put on my hospital bed. She also managed to make my bed malfunction a couple of times by pressing every button possible in multiple combinations and/or all at once. The main problem with this was the bed would’t go low enough for me to safely transfer. We even tried turning it off and on again. Nada. Then some Healthcare Assistant (HCA) came along and she fixed it.. multiple times. They had to call her from the adjacent ward and I acted like I didn’t know what happened each time. No hablo Ingles. In fact, no hablo at all!
In the last two weeks there was all this drama over my secretions (I wasn’t swallowing saliva as one normally would) which was gathering on top of my lungs. This would cause excessive coughing which hurt my head. I knew I had secretions which needed to be removed and my signal was using my right hand, four fingers together almost touching my thumb like tongs repetitively. That was my suction signal and because I couldn’t speak I was the patient who always banged frantically on the side railing of her bed. That was my call. No buzzer needed. The doctors and physiotherapists said the tube in my neck should be smaller so I remember on maybe August 23rd a doctor who was very butch came along to change the tubing size. Again, I couldn’t speak so I gave him the thumbs up (that was my thing and if you were really nice you got two thumbs up) and mimed something just before he began. I mimed it but my sister lip read and said it aloud, ” ‘Do a good job’, she said” – I used a movie quote on him. At that moment I thought that was equally funny and stupid. He proceeded to change my tube and an oxygen mask was placed over my nose and mouth whilst they took me off my main oxygen supply. He was being supervised by a lovely older Australian Doctor. She was brilliant. There was a moment when I couldn’t breathe and although it felt like ages, Aussie doc was telling me how great I was doing and how relaxed I was so I assumed it was all good and normal. Then I threw up a little in the mask which was surrounding my mouth but that’s when I was able to breathe again so I breathed and saw the vomit bubble. Classy. The change in tubing went really well and was painless so I was pleased. Every time a nurse suctioned me they had to suction around the tubing coming out of my neck(same as before). That’s where I was coughing from, not my mouth so I’d have to cover my neck when coughing which was amusing. They would aspirate me, which meant removing mucus from my subglottis using a syringe. They would then measure and record the amount of mucus extracted. Apparently this was all I was waiting for to become zero and then I could finally be decannulated and have my trachy removed and I should be able to speak. In theory. Over the next week or two this was closely monitored and it was suggested that my oxygen flow was changed to warm oxygen to help my secretions loosen up easier so I wasn’t having such severe coughing moments. It did help. I should also mention that when I was on ITU I was ‘restrained’ to put it, bluntly.
On ITU I was naughty. I was scaring everyone and my Dad was ready to tape my hands down. So it turns outs it’s normal for people who’ve had brain surgery to be agitated and fight and tug at stuff… I was trying to pull out every tube in me. I actually remember fighting with various members of my family, trying to push them away, punching one of my sisters in the face (bonus points for it being the nose, that counts as a bullseye, surely), I remember constantly being told to behave and the number of times I was firmly told “No!” was beyond ridiculous. And I understand why now because one night I pulled out five tubes; my catheter, a cannula, trachy tube, NG tube and my head drain which was draining blood from the cerebrospinal fluid in my brain. That one was very bad and I needed an emergency CT scan to make sure I didn’t screw my brain up. The thought of it scares my family to this day and grosses them out. Alhamdulillaah I didn’t cause more harm.
So anyway, I had these large wool stuffed, lilac mittens that looked like boxing gloves put on me. In my dream I was feeling unwell but the mitts were irritating me. That’s when I punched my sister in the nose. Nobody knew but my right hand was tingling and I wasn’t really with it and obviously unable to speak so I did everything I could to get them off. In my dream I saw relatives sat on my bed and my parents too, it seemed like they were ignoring me so I was hitting them to get their attention to say take these things off me. I remember faking a fever and putting a hand over my forehead to say I’m ill remove them, it didn’t work. I mimed how can I sleep like this I need to put my hands under my cheek, it didn’t work. Instead my sister said I could sleep in any position because she saw me sleep every day in random positions and told me to stop lying, the mitts weren’t coming off. Apparently one nurse loosened them towards the end because she made a deal with me and I said I wouldn’t take them off. I put my hand between my knees and successfully removed a mitten, my expression was apparently comical and I looked so chuffed with myself. The stories of me highly sedated were hilarious. I actually wish I met myself back then. Eventually the mitts were removed and I did promise to behave myself otherwise the mitts were going back on. Those things traumatised me. I can’t believe nobody believed that I needed them off. My right hand was tingling. I noticed that when I left ITU and was with it, the tingling got worse, with the cold oxygen tube on my shoulder for my trachy, it felt like my hand and arm were numb, I told my family who relayed it to the nurses to pass on to the doctors and consultants during the ward rounds each morning. Massaging it helped for a while but it was spreading to my right leg. This tingling and numbness was slowly overtaking half my body and I didn’t know it. I was eventually given medication for this about two weeks later (being a mute, essentially, meant noone knew the true extent of my problems and what I was feeling. The pain was from this numbness wasn’t so bad then but it’s nuts now. I have a high pain threshold so I tend to not make a fuss of pain. I think it reached the point when it was keeping me awake at night that I was finally given medication). After my trachy tubing was made smaller and I was given hot flow oxygen, my numbness felt better. It was the peak of summer and there I was with a fluffy, fat blanket I requested from home. I was never cold but now I was freezing. I assumed the cold was making me numb so I just sucked it up.
Things were a lot better with the warm oxygen, however, during a physiotherapy session, I was sat up and threw up a whole load of mucus, not out my mouth but it was gushing from my neck, to the point that one of my physiotherapists swore, I guess it took him by surprise and there was only so much he could catch but he was really cool about it and noticed pretty early on that I had a really irritated cough that would always get bad when I moved or sat upright. I’m so grateful he spotted this and was on the ball because I just remember being concerned about my arm being numb. He immediately paged a specific consulting team and raised his concerns with them, they came down and I was nil by mouth (or as I like to say, nil by nose seeing as nothing was entering my mouth that evenining until after my procedure the following morning)the new tube was too long so was irritating me and my cough was getting worse and when I thought about it he was right. I had my two physiotherapists, occupational therapist and speech and language therapist around me when I threw up from my neck. Very classy. I wrote a note to them saying i had a phobia of vomit, I really do. This led to a discussion about morning sickness. I didn’t have any so that was an incredible blessing for me. I also wasn’t intolerant to any foods which was even better but being pregnant for the rest of one’s life isn’t an ideal or possible cure for food intolerances.
so going back to my trachy tube being changed, a dr from another hospital (turns out it was my local) was there and he and my dude PT did that trachy change. I would just like to say that despite it being a smaller tube, when the dr inserted it into my neck again it was so incredibly painful and quite traumatising. Thankfully my PT was there, talking me through and comforting me the entire time, telling me how well I was doing and how brave I was. He knew how to do the change but wanted to be shown once more before doing it on a patient. Later down the line when there was discussion about weaning me off the oxygen and making me breathe completely on my own again, I was worried they’d change my tubing again but it turns out it was just a straightforward removal of the tubing and I should be good to fly solo from then, hopefully.
Throughout these weeks, seeing my daughter gave me so much joy and pleasure to just observe her. I didn’t realise then but she was a cruicial part to my recovery. I didn’t know the extent of my problems back then or that I needed rehabiitation care. Somewhere in my mind I assumed I would stay at The Royal London with all those same patients and soon I’d be walking and talking like my old self, dressed in my own clothes and then I’d go home and that was it. I was so wrong and so naive I’m willing to blame the meds and not my lack of intelligence.
During this time I was so happy, I also had a permanent goofy smile on my face after surgery (my facial expressions are normal now, thank God), my recovery and outlook seemed good to all and I was happy being surrounded by my family and daughter, especially on Eid day. Every day back then was a good day. I did wonder if I was indenial because surely it wasn’t normal to hear you were so ill you almost died a few times and be that happy. I even wrote , “I don’t know why I’m smiling so much consideing I almost died” to which my sister replied, “It’s because you’re grateful.”
And I was, I still am. Emotional times. Pass the tissue box. Until next time, people… Peace!