Tuesday, November 24

Billy had the tracheostomy and feeding tube relocation (not sure of the correct medical term for this one) this afternoon.  He "tolerated" both well which is a good thing.  If he is not tolerating procedures well his heart rate and blood pressure drop and his breathing gets erratic.  As far as I know he made it through the whole day without needing a shot of dopamine to help regulate heart function.  Yay!

I was reminded today that he may never be weaned off the ventilator and that I should not get so caught up with that idea.  Just passing this nugget along to everyone else.  I, for one, will continue to hope that he does not need it for the rest of his life but I will do my best to not see it is a hindrance if that is not the case.

He is mouthing words but because of the way the trach ventilator works (air is expelled through the tube in his throat instead of past his vocal cords) he can't currently speak.  His trach can be fitted with a valve that would allow him to speak at some point down the road, but I don't think that is anything that will happen soon.  There is also the possibility that because of the location of his spinal cord injury he may not be able to speak again.  The reason, as told to us yesterday, was that he might not have the muscle control to operate his lower jaw.  He bit a doctor yesterday and was able to enunciate words (while mouthing them, it that makes any sense) today, but maybe the concern is whether or not he has the ability to expel air from his lungs to make sounds.  We won't know for sure for some time.  Unfortunately we aren't very good at reading lips yet.  I thought he might have been asking for morphine and when I asked him to confirm that, he nodded his head yes in agreement.  I then asked him if pink elephants were his favorite animal and he agreed to that as well.  His nurse said he also agrees to being a girl.  All of this is clear indication that his cocktail today contained some fun drugs.

In all seriousness, we are excited about the tracheostomy.  This should hopefully reduce the occurrence of future pneumonia infections and will hopefully ease the weaning process.  If nothing else, he's much more comfortable without all the tubes in his mouth and we will learn to read his lips and better communicate with him.  I miss my brother.