Well it is Saturday morning 1145.

Dar continues to be supported by the ventilator. She is showing what the pros call “central” apnea. This is a gap in breaths taken. The vent is kicking in if Dar does not take a breath in 15 seconds.

Dar’s EEG and CT scan both showed nothing of significance. The EEG showed that she was not having any seizure activity during the test.

Her CT scan showed nothing of remarkable or distinctive nature. These are both very good signs.

Dr. O’Brien wrote an order for an MRI that I thought would be today but upon arrival I learned that Dar needs to be able to sustain herself while in the “tube”. Her Baclofen pump is not an issue but the central apnea is.

I spoke to Dr. Filbrandt and Dr Dawson in the bay area and we have collectively come up with a plan. Dr Filbrandt has turned Dar’s pump down as low as it will and should go. Dar is now at 96 mics per 24 hours. Keep in mind she was “detuned” Monday to 415 and still showing signs of total limberness. This is strange in that during all titration’s of the pump previously we saw gradual decreases in the “”tone”. Now, we see the lower we go the less tone she has. A total bewilderment to all of us.

By turning the pump down to 96 we hope to see rewards in her breathing and her cognitive abilities, in other words we are trying to see if she is overdosing on Baclofen. We may also have to go a step or two more. If we do not see the results we are looking for in the next 24 hours we may have to have a Lumbar puncture. This too will give us answers as to possible infections. A CBC and other tests may be warranted.

I also learned from Dr Filbrandt that Baclofen is heavier than spinal fluid. It is also possible that if Dar has been lying flat for too long the Baclofen can collect at the bottom of the spinal cord and accumulate. What this exactly means I am not sure, other than it may lend to too much Baclofen in her system.

Although Dar’s current situation is rare it does happen occasionally and we are told that if indeed we are “overdosing” it is treatable and the affects are not permanent.

The next 24 hours or so are big, so please pray that we will see positive changes in her breathing and her cognitive abilities. It is really nice to see her with no “tone” but not at this price.

Dar’s infections are well under control and she rests very well. The vent is a pain in the tush, but right now is a ‘friend”.

Thank you for your prayers and please continue them. I got the bills paid on time and hope to be able to get some rest soon. We truly appreciate your prayers. Another angel arrived today and I would like to again thank the “stitchers” of Angels Among us. Bless you all.

Till next post, we truly thank all of you.

Love,

Dar/Danny/Jamiesue