Wednesday, February 2, 2011

transition from sprint to marathon

The past couple of days have been rough for me and Sully. He has had some difficulties with the ventilator - bit complicated for me to try and explain but one issue was he was trying to breathe on his own and got upset and hyperventilated which caused a bunch of problems. At the same time, the ventilator was not calibrating properly and well, it was just a couple of days of up and downs. When Sullivan gets stressed his pulmonary hypertension (too much pressure in his lungs) gets worse and his blood desaturates (gets less oxygen) which is bad. And when Sully's is stressed, I am stressed. Today has been a much better day so far, he tolerated getting turned on his belly and the doctors are weaning him off some drugs including sedation so he will wake up a bit more. He needs to be more awake to cough, cry (without sound because of ventilator), and wiggle to move fluid out of his lungs (amongst other benefits). It is hard for me to see him cry and not be able cuddle him. During the last two days I have started to come to terms with what it really means to have a really sick bub and that as a parent there is not way ever of taking away a child's magic wands! Anyway, Sully's is a little soldier that's for sure. I bought him some new hats and decorated his room to lift my spirits.


  1. Dang... Good to see him on his belly though, a more comforting position to lay.

  2. Our thoughts are with you guys... one step forward, 3 steps back was Liam's journey.
    Sully will let the docs know when he is ready.
    Looks like Sully likes being on his belly (Liam's fav sleeping position and still is)
    Thinking of you Tara and sending you big ((((HUGS))))