After being seizure free for the past 24 hours, it was decided it is time to get her off the vent. First the EEG was removed to give her head a break and prevent any break down of the skin and then all of her sedation meds had to be removed. Finally we had to wait for her to be wakeful enough to be sure she would breath on her own. It took about 4 hours of waiting to get to that point. Finally the ventilator was removed and she is now back on her little oxygen mask. At this point she has not really woken up although she is breathing on her own, she has yet to open her eyes and interact with us. This is something we are so longing for her to do to assure us she is ok, but until that happens we are thankful to have her back in our arms and free of so many extra wires and needles. The doctor tells us it may take a few days for her to start to interact with us because she is still on seizure and pain meds, all of which make you sleepy. So it will take her awhile to adjust to the new drug load. As well the doctor said it is not uncommon for someone who seized as long as she did to take a few days to get back to there base line. We also got the results of Molly’s latest chimerism on monday which came back at 100% donor 2 ( Rebekah cells ) and as of today all test to find the source of the seizures have been negative. More test and samples were sent out from her lumbar puncture and bone marrow that were done yesterday but it will most likely be next week before we get any of those results. This morning before the EEG was removed the neurologist saw a few spikes that weren’t there yesterday so he uped her meds and ordered another EEG for tomorrow morning for an hour or so. We are praying with everything we have, that all is still well and she continues on this road to recovery. We will trust that in her own time, Molly will wake up and ask for us and her kids. It has been a very stressful time we are trying to take each day as it comes and pray that each day will bring a little more progress.
