@outlander @Faith-and-Hope @Former-Member @Zoe7 @Sophia1 @Bunniekins @Shaz51 @Ali11 @Peri @Starta @Former-Member
Okay ... my promised update. Apologies in advance ... its a long one.
Well ... most of you probably know by now that we finally got that call up for hubbys hospitalisation last Wednesday. I didnt wait until 11.30am as instructed, I called at 10am and asked to be put through to admissions. They said that a bed was available and to present for Admission between 2pm and 3pm. So we left in a rush in the end. Good thing we were packed and pretty much ready to go.
My apologies to you all for my scattered posts around the place while I was away in the City from Wednesday until yesterday. I had limited internet access and was posting on different threads as members asked how things were going. And I'm so slow on my little mobile phone, so try to keep it as brief as possible when I do get on.
Soooo ... the neurologist organised lots of tests, including an MRI of the brain. Which was done under a general anaesthetic because of hubbys severe claustrophia. Also did a lumbar puncture and EEG, and what seemed like a 101 blood and antibody tests. It was a relief that the MRI showed no cancer had spread to the brain. Many of these tests were done in order to rule out things, as opposed to actually diagnosing or proving the presence of anything.
The lumbar puncture (to test cerebral fluid) indicated inflamation, leading them to suspect encephalitis. Taking everything into account, including hubbys history of having autoimmune encephalitis last year, his current similar symptoms and the apparent absence of any other new disease ... it was confirmed yesterday that hubby has a recurrence of Autoimmune Encephalitis (AE). Its a relief to finally know for sure, or as sure as possible anyway.
Unfortunately there are very few options for treatment other than to go back onto high doses of steroids to arrest the inflamation. As the neurologist said, they get best results by 'hitting it hard'. If hubby responds well to this treatment which started yesterday, it will be further confirmation of encephalitis. AE is a really difficult disease to diagnose because it does not present the same as other forms of Encephalitis, and each persons symptoms are different to the next. I guess its little wonder they know so little about it. The only real alternative to steriods was to give infusions of immunoglobulin which basically causes the immune system to shut down or slow up. He did not give serious consideration to this for hubby because of his cancer, and thus ruled it out. It could have led to the cancer cells in his body reactivating. In other words there was really no choice.
Anyway .. hubby is already responding well to the steriod treatment. It usually works pretty rapidly, as I recall from last year. Before I left the hospital yesterday, he was walking a little better, sounding a bit more sane and rational, less paranoid, reduced neck and shoulder pain and was getting fewer painful zaps in his head. I was therefore confident enough to leave him for a night or two and head home. He was also agreeable to me going home, while I was unable to get my accommodation in the city extended. I'd only booked 3 nights which was the expected length of stay as per the hospital.
I'd intended going back down to the hospital today, but when I spoke to hubby and his nurse this morning they both said he had improved further overnight. The neurologist said yesterday that, provided he continued to respond well to the treatment, he could be released on Monday. Much better than the 8 days they were talking about on Friday, but not as good as the original 3 day estimate. This afternoon he has been moved from the acute care ward to a general ward, so clearly he is continuing to improve. So I am expecting he will be released tomorrow, and I know he is pushing hard to be allowed to do so.
So its back to the city for me in the morning and, if discharged, it will be a long driving day for me. Not ideal, as I scared myself a little yesterday afternoon driving home. I dozed off a couple of times. Thank goodness for those jarring ruts along the edge of the highway ... they woke me up before I ran off the road. Oops. So I stopped and walked around a couple of times after that, to try to keep myself alert enough to get home safely. Another reason I was relieved I didnt need to go back today.
I have to admit though, that I am concerned about how hubby will react to the high doses of steriods again. He will go from what he's been these past 2 months ... that of being very sick, needy, almost childlike and pathetic ... back to a much more familiar, angry and controlling man ... but supercharged due to 'roid rage. I'm not sure which version of him I prefer ... I guess I just wish he was somewhere in between the two extremes.
My poor dear Mum ... she now has a kidney infection and a bowell infection. Has been very sick and saw her GP a couple of times last week, on Wed and Fri. Is on antibiotics and sees her GP again tomorrow. My brother is taking her. The GP is threatening her with hospital if she is not much improved by tomorrow. I have spoken to her every day, and she has barely left her bed except for GP appointments which either my sister or my brother have taken her to.
The meals on wheels I tried to organise for her and my Dad ... she cancelled them. Same as the Home Help cleaner. In all honesty I suspect the reason they dont want anyone in their home is because they will see that they are simply not coping. I think they fear they will be reported and then find themselves in a nursing home. Sigh. They wont listen to reason ... that if they have these services it means they are able to continue living at home, but if they keep refusing them, then its going to become impossible for them to cope on their own.
I am hoping hubby responds well and quickly to this treatment, and that it will allow me to escape for a short visit with family soon. I need to try to get something in place for them which they are agreeable to, and which works for them. If I'm there with them, they may allow it to happen.
One thing I am happy about is that if hubby comes home tomorrow, I will be able to keep my psych appointment on Wednesday. Right up until Saturday they had been saying that he would not be discharged until next Thursday. That would have meant I'd again need to cancel my psych appointment.
Sherry 💕
