July 27, 2010
1000 Hours
Having been awhile since my last posting, I do not want you to think that things are going poorly, in fact it is just the opposite.
Since Dar’s seizures and the spontaneous bleed there have been some definite changes in her demeanor, attitude and overall personality.
Dar has been absolutely great, happy, talkative in her way, and most of the time a “little scamp”.
It seems since the most recent CT Scan that evidence of the recent “brain bleed” are all gone, disappeared, bye bye. The blood that was showing up on the previous scans is all gone and appears to have been absorbed by the brain, in fact the one area of concern way back in January has also disappeared.
Now then, do we have a clue as to what prompted the “bleed" the 3 seizures, no, we have no clue what so ever. Maybe just one of those things that goes unexplained.
Is it possible because of the seizures that areas of the brain that might have been somewhat docile were energized because of them, that too we may never know. What I can tell you is that Dar is acting and doing things now that we have been missing for a while now. Mouthing words in an attempt to say them if she had her speaking valve on. Her smile looks like a smile again as opposed to something that might have looked like a grimace.
Her willingness to participate in her own recovery is great, and again I find myself in awe of her.
We continue to turn down the Baclofen pump slowly with the hope that as we do it will help and assist her with the one area we are still having difficulty with, Dar’s respiration and ability to get off the vent.
Still on the vent, weaning continues. A week ago today Dar was totally off the vent and it stayed beside her in case of emergency, but was turned off. Dar went some 8.25 hours all on her own without too much difficulty. She rested overnight back on the vent but did not want anything to do with weaning the next day. We were convinced that we worked her too hard the day before. Since then we wean her a couple of hours at a time and give her a little break in between. This seems to be helping her when she is in the “spontaneous” setting of the vent. Spontaneous venting simply means that she is imitating all breathes on her own but gets a little support from the machine as she does it. In the event that she goes longer than 20 seconds the machine kicks in for her and takes over till she catches up.
“Assisted” breathing is when Dar is in full support by the machine but takes more breathes per minute than what the machine is set at. In Dar’s case when she is in the “control” mode of the vent, it is set at 14 breathes per minute and anything over that it switches to “assist”” mode which will show how many breaths over the 14 she might be taking.
The last day or so Dar has been in the “spontaneous mode much of the day, again all on her own but with a push from the machine and the safety net of the 20 second rule.
It is our plan and desire to have Dar off the vent as soon as possible and head back down to CareMeridian where doctors Doherty and Dawson await her arrival.
About a week ago I received an email from the California Brain Injury Association inviting me to attend their conference in November in Napa California. The CBIA is a non-profit organization that supplies information and support to families in situations similar to ours and of our close friends like the Murphy’s and the Spitzer’s. I felt honored to be asked and really don’t know quite what to expect but if I am able to attend it could be a new wealth of information and help for Dar and others that we might be able to share with. Thank you Cavi for your thought that I might benefit from this and be able to pass on that information but also that I might be able to contribute is some fashion.
Well that is pretty much what is going on here to this date, as we approach total weaning form the vent and get ready to journey to the bay area I will keep all of you posted.
Love to all,
Dar/Danny/Jamiesue/Margie and Maverick
