This week started off great, got bad then got rapidly worse.
One step forward, five steps backwards… it reminds me of the chacha slide! “One hop this time, reverse (x5)”
Monday I had reiki and could feel and flicker my right foot – the aftermath and the healing energy lasted around 18 hours.
Tuesday the central line training nurse signed my mum off so she’s able to connect, disconnect and change dressings without supervision, so I’ll never see her again but that’s a good thing in a way because the less medical professional visits, the more it feels like home! The district nursing team came along with a lovely social-care worker and the continuing care team. They’ve been amazing as the company who supplies my enteral feeding equipment refused to give us any more syringes since I left hospital ( almost 4 weeks ago). We’re using ONE USE ONLY syringes and sterilising them so mum can measure my meds and gravity feed me through my Jejeunostomy. We were advised to bin them but we only had enough syringes to last 24 hours-We use 25+ a day. There’s 30 in a box! so after ALL 7 health professionals making complaints we finally got some, but “it’s too costly” so we still have to use single use syringes for 3 days..washing them with soapy water (which is a massive infection risk) because “if we use a baby steriliser the measurements will come off” but if we don’t, the tiniest bit soap in the small bowel is not a good outcome. Sounds like something small but it’s such a stressful situation. All this cuffufle was happening in between me have weird reactions to paracetamol, yes, you heard that right. I told mum the syrup through the jej makes me go loopy but I was feverish so I gave it a go. I was high as a kite- it felt as if I was on Fentanyl, apparently my eyes were rolling, I went grey and i was slurring my speech. The same happened with the crushed tablets 4 hours later but not as bad! I’m never allowed paracetamol again. I just hope I can tolerate IV in worst case scenario.
Wednesday we met the community dietitian and nutritional and stoma nurse specialist. They were angry (as we were about the syringes) and about the poor post op care I’ve received after gastrostomy and jejeunostomy. I was told to not move my tubes for 3 weeks; after that I only twist the gastric one. When the nurse examined them and taught me how to do it properly she found a complication; which will only get worse (I’ve been screaming everyday with it since I left hospital as it is!) it won’t go up or down or fully twist. they’re almost certain that cells have acclimated and the stomach lining has grown over the disc which holds the tubes securely inside. The only way is to check it out via endoscopy (and cut it out)…which is not a safe option because the last time I had the procedure I vomited into my lungs, ended up in ICU and died and came back to life! My doctors said if I ever need another one I’d have to have GA and intubate which effects my body in an awful way. Surprise, surprise the doctor and specialist gastric nurse in Bristol haven’t phoned back yet despite the urgency. I’m stuck in pain hell.
Thursday I had a meds restock, the weirdest thing happened. The diazepam syrup, oral SOLUTION I’ve had for 10 months was changed to oral SUSPENSION. As soon as I saw the diazepam split when water was added I knew something was wrong. When the diazepam finally got down the tube I started having seizures, which is meant to prevent/ stop them. My body continued to be tight and fit for hours, this time it was different to my normal as I couldn’t hear my mum speaking to me and I struggled to breathe during it, and despite feeling strange normally, the strange feeling I felt was on a whole new level! I had 8 back to back seizures, occasionally I had 30 second intervals were I was gasping for breath and going in and out of consciousness due to the amount of pain, movement, and total utter exhaustion. My memory from the past week and past couple of years wiped from my brain. I knew who I was but didn’t know where I was, what happened to me, or the conversations I’ve just had and so on. I was completely delusional and freaked out and upset by it. Apparently I was trying to grab the walls, and although I finished school three years ago, I was shouting “I’m too sick to goto school mum” then ” I want to goto school and be a normal person, can you take me” while crying. Then my left side of my face went funny, my speech slurred, I felt trapped in my body and I was still having seizures. All I remembered was mum asking if I wanted her to ring an ambulance, shook my head I begged her not to. (Our local hospital is crap, and they couldn’t do much any way.) it also wasn’t a total utter emergency. Meanwhile mum said I was saying I didn’t know what the hospital was, my eyes were fixed and I was hallucinating. After 8 hours it all stopped. We presumed it was just an extreme seizure episode because I haven’t had a severe one for a while, but that was insane- the memory loss lasted 4 hours but slowly came back. Then I had another dose of diazepam and had one big and two little attacks… I then read the ingredients and realised it’s not the exact ingredients as my original one. That’s the problem. This proves my body is extremely hypersensitive inside and out. The doctors have never heard of that happening in their entire career, but it is me they’re talking about!!
Friday, had antibiotics for bladder infection. Allergic reactions to life, and I had more uncontrollable seizures after refusing the diazepam. This time I wasn’t delusional, the fits were just violent; jerking and tearing my G and J tubes😰 it feels like I’ve had the surgery all over again!! I also found out a care company sent out a basin with no draining hose and they won’t send me one out or refund it, which upset me more cause I can’t wash my hair and haven’t been well enough to focus on self love or self care.
EDIT: To top Friday off…my scar has split open! 😳😖
Hopefully tomorrow is better.