Tia Info Update for Friday September 4

Visit Tia's Health Center for complete blogs, medical information, schedules and more:  http://www.chaosangel.com/tia

The latest update to Tia's Health Center is the Dedication Pictures page of all the signature pictures I've made for her.
You can visit that page by CLICKING HERE (http://www.chaosangel.com/tia/signaturepics.html  (updated to current)

- The Choices Left

Thank you to everyone who has been so supportive through all of this and who continues to be there for me.  My deepest thanks and love to Briony and Tom who have been there for me day
in and day out, who have been my tireless pillars of courage, and who have kept me going
when I didn't think I could.  My thanks and love also to Lars, who has been and still is one of my oldest and dearest friends, and who has always come to be there for me when I needed him. 
And thank you to Randi with my love who's been there to listen and to talk and to understand.
And, much love and very special thanks go to Lori, who has been the patient and endlessly
empatheic soul who hears all of my late nite rants, hysteria, crying and just rambling whenever
I'm home alone.

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The Choices Left

This is a hard post to write, and it might be hard to read.

Today I sat down for a meeting with Dr. Sheth.  Briony came with me, and the others there were her nurse Mayan and a woman from the social workers department named Mary.

I will tell you what they told me, but first I will say that I refuse to give up on her and that I refuse to believe all of what they think and say right now.  But let me tell you what they said.

The telling of this requires some degree of reviewing all of what I've told you before.
As you know, first came the major stroke in the cerebellum, the one that started this chain reaction.  The second series were the strokes that damaged her brainstem and, we now believe, caused bilateral damage to the thalamus, which is why she was unable to wake up much even when the sedatives were lifted.  The thalamus, as I've said, controls many things, but one of them is your level of consciousness - your ability to be alert and wake up.  The doctors now believe that what was being attributed to fever, infection and renal failure was in part also caused by the bilateral thalamic damage.  The rest of the damage to the brainstem caused impairment to autonomic functions such as eye movement, motor strength, swallowing, eating and digestion, and the brain's transmitters that relays all brain instructions to the rest of the body.

After these strokes came the severe infection, leading to sepsis and renal failure and all the other various complications that she's been through.  Then came the swift and destructive desaturation of oxygen, which may have been caused by a pulminary embolism or a mucus plug that broke loose and lodged in the trach pipe, that led to the pulminary cardiac arrest.  While the arrest did not apparently cause any further asphixia of the brain, somewhere either before or after the arrest she suffered another series of strokes.  These, revealed by last night's MRI, affected the occipital lobe, which controls vision and eye function, and the corpus callosum which effects the ability of the right and left hemispheres of the brain to communicate to each other.

The corpus callosum is a structure of the mammalian brain in the longitudinal fissure that connects the left and right cerebral hemispheres. It is the largest white matter structure in the brain, consisting of 200-250 million contralateralaxonal projections. It is a wide, flat bundle of axons beneath the cortex. Much of the inter-hemispheric communication in the brain is conducted across the corpus callosum.

So, what does all of this mean now?

Right now, the only thing she can do is to occasionally open her eyes when her name is called.  She can seem to look at you, though they are no longer certain what she might and might not actually be able to see.  She seems to try to squeeze hands sometimes when asked, but they tell me this might only be reflexal actions based on the stimulation of having her hand touched.  So, basically, they don't know and can't prove if she is or is not responding to anyone anymore.

Dr. Sheth told me this.  He says they can't know everything for certain, but what he can say with nearly 100% certainty is that she will almost certainly need 24/7 nursing care for the remainder of her life, because she will need to have a feeding tube and colostomy bag, at the least.  Regulation of blood pressure and blood sugar will have to be handled by nurses.  She will never be able to eat or drink anything on her own again.  She will need to be on a vent/respirator for weeks, probably months, perhaps years or maybe for good.  She won't be able to come back home unless we have live in nursing care.
He says the EEG shows that there is some brain activity, but it is very slowed - it is the kind of brainwave activity seen in people who no longer have higher level brain functions and who can no longer communicate in any meaninful manner.  Nobody can estimate her actual level of awareness, but they can say that the EEG shows them that she is not in pain, fear or panic.

In time, there is some small possibility that she may improve a little, but that is defined as possibly getting back to the level of awareness she had a week or two ago, which means being able to open her eyes, squeeze hands, give a thumbs up, stick out her tongue, etc.  He doubts that she'll ever regain any more conscious interaction then that, but he cannot say that with 100% certainly.  She isn't brain dead - and I have to wonder if that isn't worse - if she is aware and can hear us and is trapped in there, my god, how horrifying would that be.

They have presented me with two choices.

They can continue constant ICU care, and provided there isn't another catostrophic event and she continues to improve, they can arrange to put her in a long-term nursing facility while we wait and see if she ever comes back any more.  Even with this choice, she is at high susceptibility for infections, skin breakdown, mucus plugs, renal failure and other complications.  If she doesn't have any more setbacks over the next 5 to 7 days, then we will be able to consider a possibility like this.

The other choice is hospice, where they will stop all the maintenance care and give her medications to make her comfortable for as long as she hangs on.

I have no time limit on this decision, they tell me.  They will continue full ICU care until I tell them otherwise, since that is what I have asked them to do.  I will not give up on her unless there is some definitive event that eliminates all hope and all chance at any quality of life - for then I would know that she would not want to be kept alive like that.

But I cannot make any other choice right now.  I am lost and numb and have not even really begun to cope with all the things in my life that are gone, over and never coming back, all the things we share and the life we have.

I really don't know what to do, and I don't know how to be without her anymore.  I never wanted to learn.  We have been together, been best friends, for a long time - nearly all of my son's life.  We have lives that are so fully intertwined, we do nearly everything together, and they were never built to be unraveled.  Sure, we had our problems and our arguments, like everyone else, but we never ever considered anything like this.  We never considered not having each other there to turn to.  We've considered all the things that could happen, losses we might have, but we always knew that we'd be there for each other to help each other through.  This was so sudden, there was no time to plan, no time to decide, and now there is no way to tell her all of this.  We've only had a year and a half of being married - we were robbed and it just isn't fair and I don't want to face this yet.  I am so numb and it hurts so much, I can't even find words to put to how I feel.

I love her very much, most of you know that, and I really need her in my life.  She's been there for me, and I for her, through so very much, good and bad.  She's my best friend, and I know her so very well - how many times have we finished each other's sentences or thoughts?  So I know she wouldn't want to live half a life with no communication, no awareness, no interaction.  But I just can't let go yet.  Could you?  I have to believe and hang on to that shred of hope that she might come back, even a little, even if its only long enough for me to say goodbye.

This, then, is my hell.  And I don't want to talk about it anymore.