My daughter, the BORG...
For those of you who know nothing about Star Trek, pardon the reference, but for those of you who do... this will make total sense.
Ellie seems to be adapting somehow to the drugs - at least that's the only real explanation that is making sense right now because that little tiny girl will NOT BE SEDATED! Ellie is regularly, around the clock being hit with three heavy duty sedation drugs and she will still push up through the fog periodically to kick and fight, wiggle her nose (because of the tape under her nose holding down the tube that comes out of each nostril) and try to rip the tube out of her throat. It will take three adults to hold her down while the nurse administers MORE drugs just to stop her struggling. (This process, on average, takes an hour.) We were worried that one of the drugs was having an opposite, stimulating reaction, so Ellie is being weaned from that one slowly (apparently stopping cold turkey would be horrible). She is being given a new drug to see if it will throw her off for a while before she adapts to that. She is also being given something to help her deal with the withdrawals that will occur when she is extubated and taken off all of the sedation drugs.
And now tonight she has started back on two of the three antiobiotics that she spent 12 days on because she spiked a fever. All tubes as well as Ellie's blood are being checked for infection. If she spikes a fever tonight again they will remove her new central line (the one that was placed when her Broviac was removed - the one that caused all of the internal bleeding over a week ago). Basically, this is the exact same place where we were two weeks ago... hoping that the fever stays down and that she won't become septic... again.
John relieved Belinda and me tonight, with plans that after a short break Belinda would join him back at the hospital. We had only been in home for about half an hour when B got the call to hurry back - Ellie was in a full blown episode. I know that John is starting to feel as I did - that it is all just too terrible for words. There is something so sickening about having to hold your child down, all the while trying not to hurt her while she is so scared and confused - and nothing you do or say can really help at all. You tell yourself that it is what you have to do to keep her from hurting herself in a big way, but nothing makes it feel ok. And then once she is finally "asleep" you are afraid to touch her or even breathe on her for fear of her eyes opening up again. I have never been afraid to touch my own child... EVER... until now.
I'm sorry to give such a depressing sounding update. It has been difficult and frustrating at times. We have about 24 hours of this before they take her off of sedation and begin an anesthesia drug that can only be used short term, until they are ready to extubate on Monday. As always, it is so overwhelming to look at this as a whole and try to predict the coming days, but in the moment when we need it, the grace of God has been there... and will continue to be there. As I was finishing this entry, I received word from Loretta that it has taken 7 people holding her down plus an anesthesia drug to finally stop Ellie's fighting tonight... well I guess it's not tonight anymore - it's almost 1:30 a.m. Thank you all for your constant love and prayers - and please pray that tomorrow Ellie will have more peaceful rest. Thank you so much!