Update Finally

After a few busy days, things seem to have settled down and once again we are working towards extubation (removal of ventilating tube). Prior to the biopsy he was getting close, but since he needed the biopsy they were not going to attempt to take him off anyways. Now that everything is done our goal is to get him back to his baseline and off the ventilator.

After the biopsy James once again had a rough couple days. We were not surprised by this as he seems to have trouble anytime they monkey with his lungs. This does not mean that it was easy to once again watch him suffer so. Our biggest challenge was once again fevers, hitting 41C (105.8F) at one point, as well as dealing with high blood pressure. The fevers were further complicated by the fact that he could not have tylenol or ibprophen. James' liver function had decreased to such a point that he could no longer have tylenol and since he just came out of surgery he could not have ibprophen, which thins the blood, They had already sedated him relatively well because the drain tube that was left in after the biopsy is very painful. In the end they gave him ibprophen 12 hours after his surgery and had to put him on a cooling blanket to bring the temperature down. This did work, but in order to use it he had to be even further sedated and to keep his body from shivering (and thus rising the blood pressure more) they had to give muscle relaxants so he could not move. On top of that they had to insert two temperature probes down his nose. One would go to the monitor and the other to regulate the cooling blanket. Although this blanket did work I must say it's a pretty eerie feeling to hold a hand that is dead cold and has no muscle function. He could still hear us but had no muscles to even shake or nod his head at questions.

Saturday night they had to put in a new ventilating tube since the swelling in his throat had decrease enough that air was leaking around the tube, and his blood gas levels were not doing very good anymore. This requires lots of sedation too. So all in all he spent the weekend pumped full of sedatations.

At this time he continues to be on a high doze of morphine to diminish the discomfort of the chest tube, which they were not able to pull out as quickly as they hoped because of an air pocket that developed. Today they were finally able to turn the vacuum off the tube, and hopefully tomorrow take the tube out, and then back off the morphine significantly. It is invigorating to watch that even through this dopiness, James still makes the effort to wave goodbye to the nurses, and to point behind him and shake his head to tell us he doesn't want his breathing tube suctioned out. Every new nurse's reaction when they see James is to want to tie his hands down to prevent him from pulling out his breathing tube out, but stand amazed that even while being suctioned he does not grab at it. They say that even adults have the natural reaction to rip that tube out when suctioned, for this process induces the suffocation panic reaction.

Yesterday they finally got around to doing the calorimetry test. This was easy to do since they could just hook the machine up to his ventilating machine. From there they could get an idea of how many calories he's burning in his current state of "rest". This told them that he has already reached the maximum for his feeds and they do not need to try pump more into him. His current rate is significantly lower then when he was well. He now requires 30ml/hr around the clock, previously he would have taken 50ml/hr if fed around the clock. Since he has reached full feeds that means that he is now off of TPN.

James liver function is slowly getting better, which could very likely be because he stopped the TPN, but it that is also hard to say as stress can also cause the liver function to decrease. Even though it’s above normal we’re just thankful that each day it’s slowing going down