A Bit of Light

James will be remaining in ICU overnight, possibly for the weekend.  His x-ray is looking better and his oxygen requirements are back to where they were before the procedure but he is still working hard at these levels and needs frequent suctioning.  They could take him off the ventilator, but then they would not be able to suction out the secretions and there is fear that he may not cough it out well enough on his own.  They also would not be surprised if he had to go on BiPAP  (see here) if they took him off  now.  So it only makes sense to keep him on as long as possible to help clear out his lungs as best as we can or we may end up dealing with pneumonia as well.

 

The ICU Team strongly discouraged the idea of doing a Lung Biopsy at this time and the Respiratory Team has listened and decided to wait until James is back to "normal" - as in, how he was before this procedure.  We were glad to hear this, but still wondered why the sudden rush and change in plans.  The doctor came to speak to us this morning and helped to clarify some of this.  They thought that since he was already intubated it might as well be done right away as it is going to be needed.  I'm guessing they also thought that he would have recuperated more by now.   Their plan had been to do a CT Scan and the Biopsy so they could take advantage of his intubation.  They did not realize that he does his CT Scans unsedated.  They CT Scan has also been put on hold until he is back to "normal".  If done today it would have given false indications as he still has far too much fluid in his lungs that is still related to the procedure and the fact that he is retaining his fluids and not peeing it out on his own.  So it seems the biggest rush was for convenienced but they realized their mistake in this area.

 

We were still wondering why the sudden change in plans as there had been no talk of a Biopsy before.  It seems that Wednesdays procedures did at least help us to end their ideas of aspiration pneumonia.  Given the amount of substance in his lungs, if this was aspiration there should have been more then just mild esophagitis, what they saw did not support a case of aspiration.  This combined with our argument that we seen no improvement in James' condition when he was last on a J-tube (feeding tube inserted into the intestines and so avoids the use of the stomach, therefore preventing food from coming back up from the stomach) seems to have made the realize that a simple explanation of aspiration is not the answer.  We are thankful that we do not have to go through the same battles again of convincing that it is something else.  It would be so nice if it were just a simple answer like aspiration and all that was needed was a j-tube, but we have no desire to waste time on what we are confident is a dead-end road.

 

So unfortunately the question remains: what are we dealing with?  And even more unfortunate is the fact that there is no answer and no idea as to what the answer is.  We are even back to questioning if this is indeed PAP.  Previous lavages indicated that this is PAP but the last lavage test came back as a weak indication of PAP.  So does that mean his PAP has improved with treatment and there is something else ALSO effecting his lungs?  or are we dealing with some completely new rare disease that has similarities to PAP but is not actually PAP?  So it seems we are back at square one and are starting all over again and they feel that the only way we're going to get some clearer answers is to attempt a Biopsy.  This will not necessarily give THE answer, but it will help to better indicate if we are dealing with PAP or not and gives a better indication of the cell fuctions.

 

When it comes to our current battles of James' feeds we have also won that battle, although it did take some time and several vomits before we got through to them that they could not feed him at this time.  He is currently in procedure of having  PICC Line (a central IV line that goes in the arm and up to the heart which can stay in for about a month sometimes longer) put in.  Once that has been put in they will be putting him on TPN (IV nutrition).  We are glad that he is finally getting the PICC and we don't have ot keep fighting for it.  He was scheduled to go in at 3:30 and we kissed him good-bye as they took him in and then head outside for a walk and to get a few groceries etc.  We came back an hour later when they were suppose to be done to be told by the nurses on his old floor that they have been looking for us as they forgot to get us to sign the consent form beforehand and could not do the procedure without it.  We rushed downstairs just in time to find them coming out of the unit and heading back to the room with him.  Boy were they glad to see us and boy were we glad when we heard that they were still able to proceed ... pretty good considering they had to beg to get him in today in the first place.  They had even called us on the overhead speakers, but that didn't do a whole lot of good since we were not in the building.  Just a reminder of why I never leave when they are doing a procedure, no matter how small it may be considered.

 

That being said I must get back as they should be done by now.