ICU

As I know you are waiting to hear how things went today I am hear to convey only what we know at this time, which doesn't seem to be a whole lot. 

 

We went into this Lavage with a different perspective then the last one.  Last time we were hoping for a cure, this time we were hoping for some answers.  So with that in mind it's hard to say whether there was any sucess.  Only time will tell us whether there are any answers, right now we just pray for stability in James' condition.

 

As we were told, this Lavage involved more risk then the last ones.  In the end they had to abort the procedure because James was deSATing and no longer stable.  They put 1100 ml in and were only able to get 60% of it out, leaving 440ml in his lungs.  From what we were told they got the same milky substance out of his lungs as previously, but it was thicker then the last lavages.  It's hard to say if this is for medical reasons or because of the technique they were using this time.  What they did remove from his lungs has been sent off for further testing, this time also looking at the lipids (fats) to try help determine the source of these.  Once again we are told that the substance removed from his lungs does not have the "classic" appearance of PAP.  This is not to say they do not believe he has PAP, we are confident he does, we are just unsure what else is going on in his lungs and how it all works together, if it does.

 

The endoscopy was also done and we were disappointed to hear that they did not find anything abnormal.  I suppose that's not the right thing to say.  It's good to hear that things appear normal, but unfortunately there was not an excess amount of mucas as we have been seeing, so we may not be getting any answers.  They did do biopsies and there is always the hope that this will provide some answers..  We were told that he only appeared to have very mild esophagitis (inflammation in the esophagus) which we would expect to be worse if he indeed had aspiration or even given his daily vomitting episodes.  The one thing they did note was that his stomach was oddly shaped and so they would like an ultrasound done to look at the surrounding body parts to see if that explains the different shape.  This could possibly just be because of his enlarged liver and spleen and they don't really see it as a concern.

 

They were unable to extubate James and so he was moved to ICU to be closer monitored and extubated (remove the ventilation tubes) when ready.  Upon first seeing him he appeared very relaxed, calm and comfortable ... much better then the time I seen him at Mac that way.  This did not last ...we were just going to head out to get some lunch when all that changed.  He began to cough and in turned deSATed badly and he would wake and fight the tubes.  It seemed something was blocking his tube and they worked hard to suction and stabalize him for some time, but his CO2 levels remained unstable.  It's amazing to see the quick response when needed.  At one point the nurse simply called out one name "Anne-Marie" and within seconds five people came flooding in the room, and then one says "Anne-Marie's on her way"  Two more people arrived before Anne-Marie (the doctor) did.  You get this feeling like you're watching a TV show as they all surround the bed and you're off to the side watching and unable to do anything.  But with time they were able to clear his airway and stabalize him again and  so far he's remained that way.  Once again they were shocked at how much profofol (aneasthetic) was needed to keep James asleep, he kept waking and they kept giving him shots of it and slowly increasing the consistant dosage.  The doctor said we (as in normal adults) would be sleeping sounding on this amount.  That's our James.

 

So at this time he is once again "stable" and we have to play the waiting game again.  In situations like this there is no way to estimate how long it will take before they can extubate him.  Patience is required!