Update on my Wife

[KeeKee]

Thinking of you both.

[swgrl09]

Holidays can be so painful ... can't imagine what must be going through your mind. I agree about focusing on one step at a time. First finding the cause, then getting to rehab. It's a long haul ahead of you both and I wish there was more we could do here to make life even a tiny bit easier.

[dale12345]

Praying for you and her.

[Traceypo]

I've thought long and hard about how to respond, I really wanted to offer words of comfort and to offer the same support as you did for me. I realise though in this situation there is no right words. We've spoken about choice in the past and I can't imagine how cruel and unjust you and your wife's situation is.
Please save all of your energy and thoughts for you and your wife and accept our kind words and offers of an ear no matter what distance.
I only hope if I'm in a time of need that my partner can step up and be the person you are, you are truly showing your commitment to her.
I'm praying for good news for you all, stay string and patient.
Xxx

[Fishmanpa]

Thank you Tracy... you and everyone for your kind thoughts. There really are no words... I'm just trying to weather the storm and it happens to be a Cat5 Hurricane and I'm waist deep in water at the moment!

Trying to maintain...

Positive thoughts

[Fishmanpa]

UPDATE:


The last several days have shown improvement. She's been out of restraints for over 48 hours and has been stable with no "episodes". She's been able to eat by herself, use the commode (with assistance) and has generally been calm. She's still very much confused and is experiencing severe cognitive and memory deficits.

I went in today to speak with the team and they feel she is ready (from a medical standpoint) to be released to in house rehabilitation. They believe she will continue to improve. As I said, this is a day to day, week to week, month to month situation. Recovery from NMDA Receptor Autoimmune Encephalitis can take up to 2 years. We won't know the full extent of any permanent deficits for a long while. But.... From a medical standpoint, they feel she's ready. She has had all the standard medical treatments for this illness and there's nothing else at this point that they will be doing. The tests have not shown any cancer and they will continue to monitor her with scans and tests as we move forward. She'll have follow-up appointments and assessments on a regular basis at UVA as well as follow up treatments if deemed necessary.

A lot of questions remain and only time will tell. In the mean time, they're making arrangements to have her transferred to a Skilled Nursing Facility closer to home. It's basically a retirement home with physical, occupational and speech therapy services which she would get 7 days a week. She needs to build her strength back and re-learn to do basic things we take for granted before she can come home. The proximity will make it easier for me as well. (30 minutes vs. 1hr 40 minute commute). The truth of the matter is that it's also bureaucracy at work here (insurance limitations etc.) and I don't really have a choice in the matter.

As I said, she's still very confused and somewhat emotional and frustrated right now. She doesn't understand what's going on, what happened nor remember anything from the end of August.

Based on what I've read and experienced thus far, I've adopted a "day at a time" attitude as to not be disappointed with the one step forward, two steps back aspect of recovery from this. It's much like my recovery from cancer. You measure progress in weeks and months. A positive attitude is a must but one must also be a realist that there may and most likely will be permanent side effects/deficits.

So that's the deal. This should be happening within the next 48 hours or so from what I understand. If you want to gain a better understanding of what's going on, I recommend you read "Brain on Fire" by Susannah Cahalan. It accurately describes the illness and I related to many things as I saw and see them happening for myself.

Trying to maintain...

Positive thoughts

[brucealmighty]

you inspire a lot of people on here and it's heartening to hear of improvements. I know it'll be a long road back but at least there's been some good news for you for once.
truly hope you are through the worst, always in our thoughts and prayers

[Carnation]

This move and improvement seems to have come around quite suddenly.
You must be very relieved that she will be moving on to the next step, let alone the reduced travelling time. I know full well how the travelling can be so exhausting after visiting hospital.
I know you will to take it one step at a time, but you also know there may be some light at the end of the tunnel.
The fact that your wife has no knowledge of her condition or what happened maybe the body's response of protecting her from trauma.
As time passes you will start to feel the effects from the exhaustion, so you must remember to eat as regular and healthy as you can.
But, this is good news for you and you can only have positive thoughts for the future. x

[dale12345]

Glad she is improving, praying that it continues.

[Fishmanpa]

This move and improvement seems to have come around quite suddenly.

That's my reservation here. This seems to be more of a bureaucratic money move due to insurance coverage than an actual confirmed improvement. As of last Saturday she was still having catatonic "episodes". I'm not confident that two days without an episode constitutes a discharge. I've seen too many one step forward, two steps back in the last six weeks and don't share the teams opinion. Yes, she really does seem better BUT.... Just two weeks ago she was in very serious condition with her heart rate and BP fluctuating wildly, having to cath her to empty her bladder etc. and one step below her being in the ICU! My gut tells me its about the $$$. There are too many "what ifs" at this point to me to risk a discharge.

The bottom line is I have no choice. I could refuse and it would all fall on me financially which frankly I can't afford BUT... I have nothing anyway so what would I have to lose? They can't squeeze blood from a stone and I'm the one that has to sign the papers.

I should feel happy about this but instead I feel fearful that it's putting her at risk.

Trying to maintain...

Positive thoughts