Tracheostomy on Wednesday

Theo will be having a tracheostomy this Wednesday. Please click on this link to find out about it.

http://www.ich.ucl.ac.uk/factsheets/families/F000305/trac1.html#whatistrach

It has become necessary for this to happen as he has been on the ventilator for so long there is some damage to his trachea from the tube. The 'Trach' is intended to be an interim measure, to allow him to be weaned safely from the ventilator over the coming months.


Our little boy is still very orangey coloured and his eyeballs appear to have been coloured in with a yellow highlighter pen. I learned today that the pigment 'bilirubin' actually is deposited in his skin cells and so he will become less jaundiced as his skin exfoliates. I was pleased to learn that the liver failure markers are reducing so that is good news!


Please send the creme de la mer products via willow ...


He had an NJ tube inserted last week - this stands for 'naso-jejunum' which means literally 'tube through the nose into the jejunum' which is a part of the small intestine. This was necessary because the monogen milk feeds were making him vomit which is most unhelpful to his cause. His feeds can be infused directly to the gut, bypassing the stomach and vomiting. However, somehow the tube has doubled back into his stomach which means his food has been going into his tum! a serendipitous happening.

Something that is magic to see is that he is using his mouth again. For the past 6 weeks he has opened his mouth only for us to wash; suddenly his digestive system is activated and he is making little baby gestures of poking out his tongue to taste the air and his lips and his appreciation of the dummy is wonderful and reassuring. With a tracheotomy his face will be clear and his head more mobile so we may be able at long last to see some smiles.
That will bring more happy tears to my eyes!!
willow