Really, part deux

4rkidz

plotting, planning and travelling
Messages
14,681
Thinking of you @Gerry and @Really, we just had to deal with my dad’s brain injury and hospital time for three months although recovery much longer but he did come back to us for a while. I can’t imagine a year, you are so resilient. You guys are always in my thoughts, sending lots of positive energy your way, always!
 

skatefan

Home in England
Messages
7,549
I cannot even begin to imagine how difficult all these ups and downs are for you all to deal with. I admire your strength as a family and your fighting spirit. I think of you and send you good wishes each day.
 

NeilJLeonard

Well-Known Member
Messages
4,347
Well, here we are. Today is Day 365.

A whole year has gone by while my beautiful wife has fought to return to us... we've had ups, downs, periods of consolidation, and times of crisis. We've maintained hope, grappled with uncertainty, and held the dike against fear. We've been supported by friends nearby, sustained by friends from afar, and occasionally been oh, so isolated and apart.

But never alone. Thank you for that.

Today, Lee continues to fight back; she has been unresponsive since the last surgery to remove her shunt; Her infection is clearing, the swelling and pressure are abating, and she continues to try to return to us. An MRI yesterday showed no stroke or obvious physical damage, and she is currently in for a CT scan to check the progress of normalizing her brain.; they're considering adjusting her EVD (External Ventricular Drain) to help her better maintain intra-cranial pressures. She seemed more awake and alert this morning, showing involuntary movements, so that's promising... but I might be imagining those things, too. Her Neuro team tells me that - for a normal person- getting the shunt removed takes time to recover from. So does a shunt infection of the type she has. So do antibiotic effects, so does sustained and repeated cranial pressures, so does ... and Lee has had all of those things.

WOW! Incredible. Very well done so far, Gerry, but keep believing. We can only hope for a positive ending after all that has gone on for so long.

NJL...:eek::)
 

Gerry

Well-Known Member
Messages
164
Good morning... it's Day 377, and Lee remains in ICU, still unresponsive as of last night; I haven't yet left to drive to the city to see her today. Her vitals are stable, the infection seems to be abating, and she is awake a lot more, but still not fully conscious. We know that antibiotics have done this to her in the past, as have infections and pressure, so we aren't super worried yet, but it's hard to not be concerned - I need to hear her voice, to see her smile, to feel her squeeze my hand again... this has happened more than a few times through the last year, and every time, the waiting is hard.

What we're seeing has the Doctors intrigued, though; Lee appears to be experiencing a rare form of Hydrocephalus in which the intracranial pressures aren't elevated... in fact, they are negative. (?WTF?) This necessitates a considerably different treatment regimen, which challenges the mindset of the doctors and nurses, and changes the potential timelines of treatment. To their credit, the Surgeons here are collaborating and reaching out to specialists in other centers who might know more about this relatively new condition; Lee is a wonderful teacher - she is happiest pushing other people to learn. Even now, she is providing a reason for that.

It's possible we won't know more until the infection (and the antibiotics) are eliminated, and she has time to get the metabolites out of her system. In the meantime, the new treatment regimen will give her poor brain time to recover and for the fluid balance to normalize. She *seems* more focused, and *appears* to be more animated, but it's hard to tell, empirically... those observations might just be my version of wishful thinking. Still, we are hopeful, as she continues to recover, that she will return to us.

Sigh. All through this, she has felt a need to be atypical... the girl always has been unique.

Thanks for keeping her in your thoughts.

Gerry
 

barbarafan

Well-Known Member
Messages
5,306
Good morning... it's Day 377, and Lee remains in ICU, still unresponsive as of last night; I haven't yet left to drive to the city to see her today. Her vitals are stable, the infection seems to be abating, and she is awake a lot more, but still not fully conscious. We know that antibiotics have done this to her in the past, as have infections and pressure, so we aren't super worried yet, but it's hard to not be concerned - I need to hear her voice, to see her smile, to feel her squeeze my hand again... this has happened more than a few times through the last year, and every time, the waiting is hard.

What we're seeing has the Doctors intrigued, though; Lee appears to be experiencing a rare form of Hydrocephalus in which the intracranial pressures aren't elevated... in fact, they are negative. (?WTF?) This necessitates a considerably different treatment regimen, which challenges the mindset of the doctors and nurses, and changes the potential timelines of treatment. To their credit, the Surgeons here are collaborating and reaching out to specialists in other centers who might know more about this relatively new condition; Lee is a wonderful teacher - she is happiest pushing other people to learn. Even now, she is providing a reason for that.

It's possible we won't know more until the infection (and the antibiotics) are eliminated, and she has time to get the metabolites out of her system. In the meantime, the new treatment regimen will give her poor brain time to recover and for the fluid balance to normalize. She *seems* more focused, and *appears* to be more animated, but it's hard to tell, empirically... those observations might just be my version of wishful thinking. Still, we are hopeful, as she continues to recover, that she will return to us.

Sigh. All through this, she has felt a need to be atypical... the girl always has been unique.

Thanks for keeping her in your thoughts.

Gerry

Well Lee certainly has the Doctors hopping. Not just them....for they might have reached out to others to come up with new tests to identify these anomalies, so it can become part of the protocol. It seems Lee is communicating with you in her own way so be sure to talk to her aloud and silently all the time. Always thinking of the 2 of you and thanking you for the update.
 

skatfan

Well-Known Member
Messages
8,409
Gerry, it's so hard when things are uncertain. I am glad to know that at least Lee is not experiencing high pressure in her brain. But it is hard when it seems a mystery, and recovery is difficult to predict. May all have patience. I guess that's appropriate right now - the Christian calendar says we entered the season of Advent - the time of waiting. Sending good thoughts and prayers!
 

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