Darkness

It seems we are once again being left in the dark ... for some reason doctors seem to like to do this when they're dealing with unknowns and uncertainties

 

We had a really good nurse yesterday who made sure Rob was able to listen and ask questions during rounds (they do it outside the room and since the door is closed you may miss that they are there).

 

During rounds it came up that they may not extubate (remove the ventilation tubes) todoay as there is talk of doing an Open Lung Biopsy today.  This is news to us and had Rob not been there it would appear as though they weren't planning to tell us anytime soon ... maybe like two minutes before the procedure so we could sign the consent forms!?!?

 

Unfortunately I do not have internet service right now (this will just be left in the window until a connection picks up and posts this).  This means I am unable to provide a link to further explain what this is.  This also means that I am unable to do my own research at this time, and since it has been months since this was last brought up it would be really nice to read on it. Hopefully we'll get a chance before they make up their mind.  If you are interested you can read more in it by typing Open Lung Biopsy in the search line of the blog as I know this has previous been discussed on the blog.

 

Off the top of my head:  This is not a small procedure when it comes to talking about biopsies, otherwise this would have been done long ago.  The procedure involved cutting through the side of his chest to access the lung from the outside.  I do not remember why it is that they need outside access, I just remember the procedure was not nice and carried risks, the biggest including lung collapse. 

 

We are not against having this done and recently I've been thinking we should start asking why this is not being considered, given the complexity of his sutation.  At the same time we are thankful to see this has not been quickly push for.  A biopsy can give much better information and answers.  But I'm guessing it's like most tests - if you don't know what you're looking for and you don't order the exact tests to find what you are looking for the answer could still be missed.

 

Our issue now is the fact that we aren't being told what's going on and the fact that we don't feel he is strong enough for this at this point.  The ICU doctor seemed somewhat in agreement with us on this one and said they (the Respiratory Doctors) would have to have some pretty strong reason before they would allow it to go ahead.  Our biggest questions are why now?  why suddenly two days after his procedure?  why was this not done two days ago instead of another lavage?  have they found something to warrant this?  or did they not find anything and the procedure left them so confused they feel it nessecary?  being Lung Specialist they should realize the state of his lungs right now, so why do they think this is necessary at this point instead of letting him recuperate better?

 

We have a feeling this won't happen today seeing as ICU wasn't totally in favour of the idea, but it has kept our senses up and made us wonder what the talk is behind the scenes.  Why do they keep trying to give us such positive information and not tell us what they're really thinking?

 

Well I'm just on my way down after my shift of snoozing, so we'll see what the morning brings.  James is doing as well as can be expected.  Thankfully we are able to get his fever under control last night.  Tylenol and Ibprophen were not working and so they had him packed in ice most of yesterday.  I was freezing just sitting in the room because of the vent above the bed, and here I had to look at this little guy surrounded by ice ... poor thing.

 

I will leave of at that and will update whenever possible.  If the Open Lung Biopsy is not done the hope still is that he will be extubated today.