Saturday, October 18, 2014
My dear man had a great day today-
his 31st day in hospital-
now in an acute rehab unit-
bright eyed and clear thinking (relatively speaking)-
tired but eager to work on his recovery.
His mood was very stable and his walk was fairly steady (with a walker).
His speech was soft but fairly clear.
I know I should not let his state of recovery rule my mood and life but
This was an amazing day.
Plus, we met a new doctor (a hospitalist) who predicted that David would recover most of his cognitive and physical abilities in due time.
We just need to be patient.
Wednesday, October 15, 2014
I was warned that my dear man's recovery from the spinal bacterial infection, plus two other infections and encephalitis would be slow and long with peaks and valleys but after about a month now he seemed to be slowly improving, enough so that he could move to another hospital for 2-4 weeks of acute rehab.
David is still very flat emotionally but expressed happiness about the move.
He has not been sleeping well at all (like barely) and that is hindering his progress.
When they medicate him to get him to sleep, he is lethargic and sluggish and confused the next day.
And despite the meds, sometimes he still doesn't sleep much.
He tolerated about a half day of rehab on his first day yesterday (evals, really, they did not push him too hard) and then in mid-afternoon he just crashed....confused, exhausted, mumbling, would not/could not eat, tense and agitated.
Like he was two weeks ago!
The social worker called me and explained what seems to be happening and how they are dealing with him.
She said he has months, not weeks, of rehab ahead of him.
They will work intensively with him and then set him up with therapy at home.
And she said he may never recover fully.
It is well and truly sinking in to me and I am overwhelmed.
I am sad and lonely and feel incompetent.
My family and friends have been a great support system but I feel so alone and unable to deal with all of it.
And, as if I needed more, Hurricane Gonzalo passed almost directly over my second home on Anguilla and there is some wind and water damage to our beloved Jasmine Villa and I have no idea how I am going to pay for those repairs.
Thank goodness I have my grandbabies to hold and cuddle with...
they are my reason to get out of bed in the morning.
Tuesday, October 07, 2014
My dear man is slowly recovering from a major medical crisis.
On Saturday he could only say single garbled words.
On Sunday he could speak short sentences, not always making sense.
On Monday he could string more words together with more meaning (he slowly asked me if I was paying the bills on time-usually his job) and was getting his needs met.
Today he was speaking much more and more clearly but as he comes out of the fog he is much more agitated, impatient, irritable, etc., which the nurse said is completely normal.
He is sort of hyper-sensitive, besides being upset about realizing something terrible has happened to him and not being able to do anything about it.
They got him up into a chair for a while yesterday and a little longer today.
He is balking at the puréed food offered to him (he was unable to swallow for quite some days) and they are letting me bring soft foods from home.
He can stand, with two nurses helping, long enough to move a few steps from bed to chair.
He is still on three different medicines by IV but they are trying him on crushed pills in applesauce for one of them (yuk, he says).
Tomorrow they will do an occupational and a physical therapy evaluation, which will determine the next step in his recovery.
A case plan manager called me today (I took a much needed day off from the hospital to babysit...I have been with him 10-12-14 hours a day every day in the two hospitals he has been in for 19 of the last 21 days) and suggested a skilled nursing facility - a nursing home!
I said absolutely NOT (no offense to any SNF nurses out there) as he needs way more therapy than they provide. We are exploring acute inpatient rehab places for him and my fervent wish is that he will go back to Newport Hospital to their Vanderbilt Rehab Center.
Soon, I hope!
He is getting miiiiiiighty restless where he is.
Thnx again for all your support. As word is spreading in our circle of friends and family people have so generously dropped off soup and small meals for me...much appreciated as sometimes I don't get back home until 8-9-10 at night and am starving and too tired to think about a meal.
Sunday, October 05, 2014
We were told yesterday that my dear man David will probably be in the hospital for another two weeks (!) and then go to acute inpatient rehab for a month or TWO!
I don't know if they are trying to prepare me for the worst or just letting me know his journey back will be a long difficult one.
He still has significant damage to his brain from two bouts of bacterial meningitis and a viral infection that caused encephalitis.
He's unable to walk, talk much or eat.
Yesterday they did a swallowing test and he barely passed...they are starting him out with a few bites of purred foods, which he struggled with.
He has lost about 40 lbs since he hurt his back on July 1st.
He is in no pain and not aware enough to be upset with his condition (that will come).
He says a few words but struggles to get them out and often gives up.
My younger son spent most of the day in the hospital with me and that was nice.
My out of state sister home for a family wedding stopped by and he certainly recognized her and smiled. She said she was so happy to have seen him because it is hard to believe such a healthy active vibrant man can be struck down so quickly like that (she saw him at the end of July when we met in Anguilla for vacation).
So, one day at a time.
I came home last night at nine, looked around my house and realized how drastically my life is changed now. I will be learning to do a lot for myself, as well as taking care of him, and, of course, my adored grandkids (resuming that this week, come hell or high water!).
David and I had created a lovely partnership in our 46 years together with a mutually satisfactory division of labor but I'm confident I can assume both of those roles for a while.
I am assured over and over that David WiLL fully recover from all of this but it may take up to a year to fully resolve.
Awful, yes, but it could be worse!
Hold your loved ones close every single day because you never know what may happen.
So, I am walking by the sea with my sister in a few minutes,
Then going to visit my man for a few hours,
Then going to the wedding at four.
Have a joyful, peaceful Sunday!
Friday, October 03, 2014
He has suffered so and been through so much since hurting his back working on our new boat on July 1st.
I will not give you all the details (see last few blogs) but here is the latest version:
The bacterial spinal meningitis has come back as his antibiotic apparently failed
(we hear so much about antibiotic resistant bacteria...well, here it is...the bacteria changes as it gets used to the antibio being administered).
He has had fevers and he is unable to walk, talk, or eat since Monday as the infection is also in his brain.
We moved him to a bigger hospital on Tuesday with a larger infectious disease department.
He is in serious but stable condition.
They changed the antibiotic, added another and are keeping him safe and cormfortable while his body fights the infection.
He is not in intensive care, like last week when it started, as his vital signs are all stable and the fevers have improved.
He is a bit better today, less fever, eyes open more but does not know where he is or why.
When I kissed him hello he mumbled 'who are you?'
He keeps smiling at me, though.
His body is hard at work fighting the infection off and it will take some time.
He should be here at least another week and then will be in acute rehab, which is also in a hospital setting. I will try to get him moved closer to home so his family can visit him (right now we are about an hour away).
I have been with him 12 hours or so every single day and cry when I think about how much I miss my beloved grandbabies.
But he needs me more than they do right now.
Thanks so much for your spark love, goodies and kind prayers and messages through this difficult time.
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