We’re hiding out…

We are trying to make the best of our situation,  in all honesty I wish that I could crawl up under the covers and hide with Lucy.  Sleep has been an issue this entire admit,  not enough of it that is.  A few months ago we switched Lucy’s reflux med, we don’t think this med is holding her anymore.  Lucy suffers with  gastroesophageal reflux disease (GERD), severe reflux which is causing her to cough and choke especially when she is sleeping, thus causing her to wake and me too.  We are going to be adding an new IV med for reflux with great hopes that this will do the trick.  Our only other option if it does not is surgery, and we all feel that the surgery would be too challenging for our girl.

 

Lucy has been fever free today, hooray!  We have several theories as to why Lucy had a fever yesterday and they all boil down to this…her little body has been messed with way too much!  Most likely when they pulled the line, bacteria spread into her bloodstream. Since she has been and continues to be on a multitude of antibiotics we feel we have things covered.  Lucy’s culture did grow out a different bug, a strep bacteria.  Dr. R is going to put her back on IV vancomycin, to cover the gram positive bacteria so that we can be sure that we are covered.  Good and covered is definitely what we are at the moment, she is on five different antibiotics, two antifungals, and dozen or so other meds…it’s a lot!  

Yesterday we took a trip down to interventional radiology (IR), the place where Lucy gets all of her GJ-tubes inserted.  Dr. R wanted the tube replaced regardless of whether it was still in position.  They took a scan of her belly to check for placement and it was still in position, but barely.  The more surprising finding was that Lucy’s bowels have completely shifted 180 degrees.  Because we had a scan of her abdomen last Friday we could conclude that this happened to her sometime this week.  According to the radiologist it is something they see, but it is not very common, especially for it to happen so quickly.  Like we have said, our girl likes to take the road less traveled, and boy is she ever.  Due to the increase in belly pain it was decided that we would try a shorter J-tube this time in hopes of alleviating some of Lucy’s pain.  We all feel that this tube will migrate out of her intestines and into her stomach fairly quickly, but it is worth trying since she is so uncomfortable.  Yesterday’s tube placement went fairly quickly, it was because her belly was empty.  When all was said and done Lucy said “I cried teeny bit”, I think that even she was amazed at how quickly they were able to place her new tubie. 

Dr. R is negotiating with surgeons today to see if anyone would be willing to place a line in Lucy tomorrow.  He knows and understands that we want to go home, and he believes that since pulling the line, we have eliminated the source of Lucy’s infections.  He just needs to convince surgery of this.  I will wait patiently for him to come back this afternoon and give me the verdict…really, I will.

Drew and the kids are coming for dinner and our monthly support group meeting, Chronically Cool Families.  Helen is coming to stay and play with Lucy since she is still on isolation and can’t leave our room.  I am looking forward to seeing everybody and Lucy is too.