No change

Porter had an echo this morning and the hope was that by being off some of the diuretic meds even though he hasn’t tolerated being off of them all together that his LVOTO (left ventricular outflow tract obstruction) gradient would have been less but is was not.  It was the same, 4.9 and his heart rate was lower (120’s) this time than the last echo so I’m guessing if his heart rate was the same (140’s) as previous echo his gradient would be higher.  This is not the result we were hoping for so now we wait for the Cath he’s supposed to have Thursday to see where we go from here.

I came back from lunch downstairs to a bunch of people in Porter’s room with a portable vent ready to wheel him out of the room. The fellow said they were waiting for me to get back and I said they could have called me as I was just a few floors down.   They have noticed that Porter’s head circumference has gone from the 3rd percentile to the 50th percentile since we have been here and since we know he has fluid in his skull they wanted to send him for a CT scan to make sure the fluid level hasn’t increased.   Thankfully it has not but they will continue to monitor his head growth.  It’s been a busy day and I was able to address everything that occurred yesterday with respiratory and the lights being left on in Porter’s room at night.  He was much more alert and active today!!  We played on the mat and he made a great effort at tummy time today with OT.


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