Day 41 - The measure of a person

     It's easy to provide updates when everything is going well, but much harder when the news is largely negative.  Since the surgery Evan's health hasn't improved much.  The only positive is that his fevers have decreased in frequency, however Tylenol has no effect on them and can only be broken with Motrin.  This is less than ideal because it impacts his platelet counts and paints a misleading picture when determining his bone marrow health and slows healing.
     The biopsy results have returned for the growth in his lung.  It appears that what the surgeon removed, in addition to a portion of his lung, is mold.  Yes, you heard correctly, mold.  They switched Evan to another anti-fungal medication yesterday morning to begin attacking that.  For those keeping track at home that's now two different types of fungi found in his system and that doesn't even include the bacteria.  The lesions and sores on his body are larger and in greater numbers now as well.  The dermatologist came by late yesterday afternoon and took samples to run biopsies on them.
     I spoke with someone on the surgery team this morning and the plan is to switch to a water seal for Evan's tube helping support his lung.  If that goes well over 24 hours they'll look to remove it altogether.  He's off oxygen now and his breathing was a little sketchy last night, but it picked back up to normal levels after a couple of hours.
     Yesterday we did a CT scan of his abdomen again to see if it might show any other pockets of infection.  The results weren't much different than what we've seen previously.  Enlarged organs and some smaller pockets of fluid, possibly fungus, on his spleen and liver.  The doctors want to continue with our plan of attacking the mold, while also staying on the antibacterial and other antifungal medications.  While we were out we also did an ultrasound of his PICC line to check for clots or other areas of infection.  The thought was to rule it out as a possible source.

Checking out his veins around the PICC line.

     In order to better manage Evan's pain the doctors put him on an IV morphine drip which he can control.  Anytime he feels discomfort in his stomach he can hit the button, but it's timed to prevent him from getting too out of hand.  Also his eating has almost stopped completely so I'd fully expect them to put him on IV nutrition for a while.  This might not be the worst idea as it would give his stomach more time to heal.
     Today we have an x-ray scheduled for his chest to verify his lung is healing as expected, followed by an MRI of his head and chest.  They'd like to check again for signs of infection in his head and sinus cavities.  If you get the feeling they're not sure of the source of infection you're not alone.  They spoke of sending us back to the ICU and while it's less comfortable overall I'm not that opposed to it.  I feel like up there they might be better equipped to handle the various ailments he has.

Closest thing I got to a smile yesterday.

     When you're acting as an advocate for a loved one, whether it's a child, sibling or parent, don't be afraid to speak up on their behalf.  Challenge the medical teams to work together for the betterment of someone you care about.  This might not be popular in the short term, but your loved one's health is more important than some temporarily hurt feelings.  I'm still holding out hope that the teams can gather the information they need and get Evan on the road to recovery instead of sitting in neutral.