Yesterday, I had a day off and just did a lot of nothing (although I did do some cleaning and tidying). Of course, it was another day when Colin’s body decided to rebel again, and he just began to feel very ill again. His blood pressure went way down, he felt hot on his head and freezing on his legs and feet, and had a pounding headache. He had an autonomic dysreflexia (AD) episode. The doc identified that he has another bladder infection, and has sent his urine off to the lab to identify so they can treat it properly. I suspect that the last time he had to go to ICU was also AD, which I saw signs but didn’t understand what they were, or how serious they could be, and so it went left unidentified for 4 days, at which stage he went into respiratory distress, the bladder and kidneys were infected, he had sepsis (which in itself can also become life-threatening) in his right testicle, and it all went downhill until he was treated with antibiotics.
Autonomic dysreflexia is a serious secondary condition that can affect quadriplegics, and if not identified and treated promptly, can be life-threatening. Here is a great page of info about it from the Christopher Reeve Foundation resources page: Autonomic dysreflexia info.
Luckily, yesterday, they were very quick to see what was happening, and he was helped immediately, and as a result, was so much better today that he was able to do his physio and gym sessions, etc. I arrived today at the end of the last group session – they were playing that balloon game we all used to play as children – sort of passing it between each other, and trying not to let it drop onto the floor. Colin has little use of his left arm, and no use of his wrist, hand, or fingers, but was batting the balloon sort of mid-flight to the next guy. He is not yet able to lift his right arm or his right wrist much, but they are exercising it, and I know he is determined to work as hard as it takes if he is able to get some movement, so we still hold out hope. As he says: “hope for the best, but expect the worst”.
When we got back to the ward, and he was in bed i turned his phone on. He managed with some effort, and his hand in the brace / splint to sort of use his thumb (which he still can’t move) as a stylus to enter his samsung pattern code, and then open his message app, and then scroll up a bit. It took huge effort on his part, and there were MANY false starts and wrong clicks, but he is determined to get there. I am so proud of how diligent he is at working despite how tired it makes him, and how much it hurts. I am reminded daily why I love this man so much.
I also got some other news today from the Social Worker. The team is coming to the house next week Thursday for a home visit. This means they will come and see how the house is set up, and how to best optimise the space to be suitable for him. It may include things like grab rails and ramps, but I have no clue. They need me to do a bit of homework – taking photos of the doors, bathroom, and bedroom, as well as measuring the space to see if a chair will fit. There are a few doors that may be too narrow – I have not measured yet, but I have no idea what to do if they are too narrow. I mean, what do you do? Knock the wall down? She also gave me a list of carers and carer agencies, and some info about how to go about deciding if we will get someone full time, through an agency or privately, and more, with the pros and cons of some options etc, which was very helpful. We need to start thinking about this for the future – if we will get someone to help, will I be able to do it all myself, how many helpers we will need, what type – will they need nursing training as well, and so much more. I am feeling a little, not quite overwhelmed, but perhaps medium-whelmed at this, but I am also so excited to already be on this next step. It will be beyond lovely when he can come for his first home visit, and I know he can’t wait.
It was a really good visit – we laughed and laughed, and chatted, and just spent real time together. Holding hands, and giggling, it was a bit like early days of dating, and it reminded me of all the good times, and promised me all the good times that are still to come.
Every day I am grateful that Colin was not killed in the accident, and although he has a devastating injury and will have to get used to a new way of doing things, I am just so grateful that he is still with us.
I am also grateful for friends, family, support structures, technology, nursing staff who *really* care, and so much more. I think I was in a grump lately and just could not see much light at the end of the tunnel.
I am grateful for sunshine, kitties who are so loving and silly, doggies who run to the door when you come home, hot and fresh veg soup, and the best medical care we are privileged to have.