So it has been a while since we have given you a medical update on Ian. He is doing ok. We did just recently have a scare where we thought he had a trach infection. The culture came back growing lots of stuff, all of which were things they were expecting to come back with. Many thoughts and emotions were going through our minds, knowing he may have one and what that could or could not mean.
He is becoming increasing harder to understand, especially at night when he is more fatigued. His eyes have been one of his greatest tools lately in communicating.
Increased pain has been something else we have been struggling with. He has been getting his break through pain medicine more often, sometimes more then once a day. So when his Gilchrist team meets next they will discuss his and most likely increase his methadone.
Eating has been something he has not been doing so much of. We have started a food journal to see what his intake really is knowing that he does not need what you and I would need. Laying in bed and not exerting yourself does not require much but does it require more then he is getting. Once we get the results from the food journal, if he is not getting enough, Brian and I will then have to decide if we are going to just let him continue to eat the way he is or going to start some tube feedings. Both have their pros and cons and this will be yet another difficult decision we will need to face.
Last night, Ian needed to get out some frustrations so he yelled, I HATE THIS DISEASE....we could not agree with him more.