I'm now in 14th year of MS, not MS, ? Last March I met a team of Dr's who said they would get me as near to a diagnosis as possible. I haven't heard anything since and January was planning to chase things up as usual when I deal with the NHS.
My Mum was discharged from hospital on 30th Dec. New Year's Eve morning I had to ring an ambulance, we spent the day in resuss. I had to phone family and tell them to come as we were told she couldn't survive.The state of her when she was discharged was disgusting and she had a very high temp.
Mum was admitted to ITU and Dr's still can't believe she's survived. We spent 8-12 hours a day in ITU with her. After nine days she was moved to a surgical ward. I feel I'm having to watch her and chase everything up.
Her temp kept going high and yet they had arranged for her to be sent for rehab at a small community hospital. Luckily they were too late that day to have her admitted. They decided they needed to find out where the infection is.
She had sepsis, pancreatitis, multi organ failure and aspiration pneumonia in both lungs. She has been on various IV antibiotics. Last wednesday they decided to do a sputum test and urine test and left the bottles on her table.
Her temp started spiking two days ago again. Yesterday they did a urine sample, a week late and the sputum pot is still sat there. This should not take a week.
One night I went in and noticed her lips looked swollen. I told the staff nurse that for the first time last year she had gone into anaphylactic shock. It turned out they think she has become allergic to ribena and blackcurrants. A couple of days ago she started vomiting badly and I said it could be the erythromycin she'd been put on.
Many people in ITU swell up badly. My Mum's legs are still so swollen she can't lift them. She has another neuro condition and is a wheelchair user. I had to suggest it could be lymphoedema. We've also been informed she now has intensive care myopathy which is a neuromuscular weakness.
I'm going in every day as I'm feeling I have to keep an eye on everything. I can't blame the staff, they are so busy and in the NHS now just can't cope. We were told my Mum just shouldn't be alive so I'm going to do everything to keep it this way. I can't drive due to vision loss and being a wheelchair user complicates things. My husband takes us in every night but sometimes I get a lift on an afternoon aswell. I'm now staying in bed most of the day to be able to do this.
Over the years I've had bowel problems . I always put it down to IBS. Last year they became more troublesome and my family have been pleading with me to go to my GP. Last week these bowel problems flared up big time. They cause extra fatigue to my normal, problems with eyes, joint pain, extreme diarrheoa. I have episodes of what they think are autonomic dysreflexia and these are happening frequently. This is leaving me to be scared to be alone and is causing severe anxiety and I think panic attacks which is making everything worse. especially spasticity. It just seems to be a vicous circle.
My GP has referred me back to gastro who I see for swallowing problems as he's concerned about some of the things I mentioned about my bowel problems. They say keep stress to a minimum but when you have a family member who has been so seriously ill you do everything you can.