Day 54 - Pharmacy 101

     Today's update should be very short since there's very little to report on.  The ID team is pleased with his c-diff progress and has decided to pull his daily oral vancomycin doses.  This means we're completely off of any antibacterial drugs, only the anti-fungals remain.  It also means the medical staff doesn't have to wear gowns and follow stricter cleanliness guidelines while attending to Evan.  His skin continues to look better each day and the nursing team is doctoring his surgical wounds to help shorten his recovery time.

Reading and writing to keep up to speed with his kindergarten classmates.

     As we've lowered the morphine drip volume Evan is starting to complain of stomach pains again while eating.  We mentioned it to GI and they're going to monitor over the next 48 hours as we start to eat more solid food.  Evan's TPN (food via IV) is also being removed in hopes that his appetite will return.  He's slowly consuming more solid food, but it's a bit of a chore for Cristy and I because he doesn't have much of a desire to eat.  His stomach size looks almost back to normal as the c-diff slowly fades away.

Chewing straws now to prevent him from biting his lips.

     The Oncology team has received approval from the surgeons to move forward with Evan's spinal tap procedure on Thursday.  The agreement was to perform this work while he was completely sedated under the supervision of an anesthesiologist.  Evan is due for these injections for three consecutive weeks.  A CT scan will be performed next week to see if his lungs are healthy enough to do these under a twilight type sedation.  We were given his blood counts this morning and his hemoglobin was low, so Evan received a blood transfusion this afternoon. The WBC and platelets were high which caused us to pause.  They assured us this wasn't anything alarming and that his blood will continue to see highs and lows while battling infections, receiving chemo and having daily blood work done.

Music therapy time using the maracas.

     Evan has kept Cristy and I on our toes as we try to learn about the various drugs going into his body, along with any side effects and how his body responds.  My wife being the meticulous creature she is has been keeping track, although we're pretty sure that some drugs are missing from this list.  It's amazing that a four year old can handle so much.

• vfend (voriconazole)
• micafungan
• lovenox
• prevacid
• morphine
• phos-nak
• TPN
• zosyn
• amakacin
• ambisome
• rocephin
• meropenem
• vancomycin (IV and oral)
• mercaptopurine
• vincristine
• methotrexate
• cytarabine
• dexamethasone
• toradol
• ibuprofen
• acetaminophen
• benadryl
• mag-citrate
• ex-lax
• flagyl
• zofran
• ativan

     I close out today's entry with a line from the movie Rocky Balboa that I find apt and inspiring.  I'd love to attribute this quote to the proper person, but since it came from a movie I don't know if the original source was Sylvester Stallone or another writer, but I digress.

"It ain't about how hard you hit; it's about how hard you can get hit, and keep moving forward.  It's how much you can take, and keep moving forward.  That's how winning is done."