10/29/13 Morning

Whew! What a night of ups and downs. Nicole started to wake up after about 9, and fought the ventilator tube. She understood when we told her it was helping her breathe, and needed to stay in, but each time she roused, she wanted to pull it out.  We worked to help her relax, listened to nature sounds (one of the Pandora stations on her phone), and read all the way through one of her books aloud....

The nurses were great, so patient, talking to Nicole through the struggle.  They worked with her meds; it was quite a dance.  Most meds designed to help her relax either suppress her blood pressure or her breathing; neither of which is OK.  They reassured us that the struggle would pass once the tube was out, but that some kids have this struggle. By 6 this morning she would look around occasionally, recognize us, and return to rest. When resting her breathing became more spontaneous, and we could see from the screen on the ventilator that it was helping her less and less, until finally the ventilator was not needing to help her at all.  The first concern (spontaneous breathing) was taken care of.  And then the second issue: her lung's ability to move oxygen into her blood.  Her left lung continued to be compromised, but she was doing well according to the monitors.  However, she has a bit of secretion in her lungs, and the more alert she became, the more she coughed against the vent.  A couple times her saturation levels dropped, but finally and her saturation levels stabilized in the high 90s.  Yahoo! Second issue covered.

And then her heart.  It appeared that the newer dose of antirrhythmia meds she was placed on earlier in the evening were doing the trick.  No acting out from her heart during the entire time!

Then by 9 she was alert enough to work with the team and was extubated.  That was quite a coordination between a half-dozen staff, some standing by if there was a cardiac event.  But Nicole followed directions, and it went well.  In fact, she was breathing well, with good, deep coughing, and able to use suction herself for the goop she is getting out when she coughs.When asked how she felt, she said "tired"

SHE SPEAKS!.

Mid-Day

Nicole has been settling in this morning.  She remembers her costume for Sat night, but little else so far.  The nurses are so gentle orienting her to the fact she has lost a few days, and Nicole seems to be taking it very well.  She asked about her sister to make sure she was ok.  Several friends came by briefly, as well as Michaela (whose birthday party Nicole was attending Saturday) and brought stuffed animals, bunches, and bunches of signed cards and posters from friends.  Nicole's face lit up to see them, and the cards and notes.  So, so many wonderful, caring people sending good thoughts and prayers toward Nicole.  It is heartwarming!

The plan today is to ensure she continues to breathe on her own, and that her heart behaves on the meds she currently has.  So far, so good in that arena.  She is working  on improving lung function, and coughing up the congestion.  They will do a swallowing test later this morning, and then she can begin having some of the water she is so persistently asking for.