The Woods

      On this holiday weekend where many people are enjoying one last camping trip at the end of the summer,  we instead hung out in woods of a different kind.  Things are improving and we are no longer deep in scary forest with fear and uncertainty lurking.    Instead we have traversed the deepest and darkest of the woods and have reached a clearing.   Still surrounded by tree's but with light filtering through the trees.    Not quite out of the woods yet, but away enough from danger that we feel safer.   His blood pressure was finally able to stabilize and he no longer needs the norepinephrine to keep his blood pressure up.  It's still low, but not dangerously low.   With that stabilized  we were able to move from ICU to a normal room on the BMT floor.   He no longer has a blood pressure cuff monitoring every fifteen minutes and they were able to remove the "tele" (telemetry) to monitor his heart.  

     However, the cultures they took on Saturday came back and still show infection.  The infectious diseases doctors are concerned.   They were hoping that the antibiotics would have wiped it out by now.   Since staph is "sticky" and likes to stick to plastic and also other places in the body, we met with the doctors from Interventional Radiology to remove his port.  He has had it for almost five years and it's been a huge blessing so we are sad it has to be removed.    We thought they were going to remove it today, but with it being a holiday it got pushed back to tomorrow.   He will have a "line holiday" for a couple days and then they will probably put in a PICC line.   They mentioned today that he will likely continue IV antibiotics once he returns home, likely via home health nurse.  Then eventually he can probably have a new port placed.  

    As well, while in ICU they did an echo (an ultrasound of the heart) last week to check and see if the infection that has stuck to his heart valves.   They weren't able to get a good picture so they want to try a different approach.   They want to sedated and intubate him so they can do the ultrasound internally through his throat.   We are so protective of his airway after all we've been through that this option is a bit terrifying.  They did more cultures this morning, but they take a couple days to come back so there is a frustrating delay to know the current state of his infection.  

    Yesterday overall was a relatively quiet and simple day which allowed us to rest.   In the morning there was a nice surprise when someone came into our room saying she had a gift.   A cute basket filled with fresh fruits and snacks.   As well there was a bag of freshly baked chocolate chip cookies.   I offered one to Chris and a huge smile crossed his face.   For a moment I could tell he was able to escape the current situation.  He closed his eyes, enjoying completely the moment.      As well, there was a sweet card with this beautiful painting.   While I am blessed to know that there are many people that I could call on at any time day or night, sometimes moments of need come quickly and suddenly that there simply isn't time for earthly help.  

     While cancer doesn't observe holiday's, the hospital does and it was very quiet today.   We were just relaxing, minding our own business when Chris was suddenly woke up emptying his stomach.   The two different nausea meds haven't helped.   In between bouts, Dr Sborov stopped by.   He checked on the progress from this weekend and we caught him up with what we knew.   Knowing that we have discontinued chemo treatment to do anti-biotics in the past, I wondered if the 4-6 weeks of antibiotics they want to do for this infection would require the same.   He confirmed what I suspected.   We are between a rock and a hard place.   The myeloma is also cluttering up his blood which weakens his immune system.   I'm going to leave that ball in his court to figure out.   For now I'll just do my best to try and help Chris through the night.    I think it's going to be a long night.