Line Removal

Emmett did indeed have an infection.  They isolated a bacteria in his blood which grew a culture within six hours (normally it takes 24).  As soon as we started the antibiotics on Tuesday his fever went away, and he hasn't had any more stomach pain since Tuesday night.  But his blood grew the bacteria again on Wednesday and Thursday which led them to believe that it may have rooted itself in the plastic of his central line.  Because his fever went away they believe it's all out of his body, but it's possible for the bacteria to continue to grow on his line under a biofilm which protects it from the antibiotics.  And though his blood may eventually show no traces of the bacteria, when his immune system is suppressed on a future chemotherapy cycle, the infection can come back with a vengeance.

So they decided to remove his central line and place two IVs until the infection has cleared his blood.  After the infection has been cleared for a few days they will place a PICC line (peripherally inserted central catheter) in his arm which will remain until he's completed the 1-2 weeks of antibiotics to treat the infection (the PICC line is needed because they typically can't draw blood and administer chemotherapy through IVs).  Then after the antibiotics treatment has finished and his blood counts (immune system) has fully recovered, they'll consider replacing the PICC line with a new central line.  The specifics of the new line (what type and when) also depend on what type of continuing therapy our doctors prescribe after his MRI evaluation next week. 

The good news is that Emmett has been himself and in great spirits since the fever went away Tuesday night.  The bad news is that removing his central line (and placing IVs) meant another trip to the OR (2 OR trips plus one other sedation by the time all is said and done!)

Typically Emmett has dealt well with anesthesia and surgeries.  Yesterday was a different story, however.  It didn't help our nerves that the surgery was delayed from 2 pm until sometime after 5.  Luckily he fell asleep around 3 and stayed asleep until they administered anesthesia in the OR.  At radiation when they would give him propofol he would always moan a few times when it first entered his veins.  Though he was asleep when it was administered yesterday, he screamed "nooo, noooOOO, NNNOOOO!" before he lost consciousness to the propofol instead of natural sleep.  That always breaks your heart.

When we were called into the recovery room about an hour later Emmett was screaming and screaming.  Normally he wakes up from general anesthesia rather slowly, but by the time we got in there he was in a hysteric rage.  In addition to removing his line they had also placed IVs in his right hand and on his left foot.  To keep his limbs stable they had attached two boards, one to his right arm between the elbow and his hand and the other to his left foot.  They hadn't expected the procedure to be painful and had used local anesthetic and a local to pull the line.  The nurse said she had a prescription for morphine so we had her give him some to see if he was screaming in pain.  It made no difference.  It was about that time that we realized what he was screaming: "oughff, oughff" while holding up his arm and leg with the IVs and stabilization boards.  He was furious that he'd lost function of two of his three remaining full-functional limbs.  That's what he was so mad about -- we were glad to learn it was nothing more serious.

You have to commiserate with him; he never knows how his body will be different when he wakes up from anesthesia.  Imagine if you woke up one day to find out that your right arm had been amputated at the elbow and your left leg at the knee.  I guarantee you'd be in a rage too...and that's essentially what Emmett experienced yesterday.  We're very glad he's able to verbalize so much these days...but there's still so much he doesn't understand.  In many ways that's a blessings, but sometimes it's hard at the same time.

He never stopped screaming in the recovery room.  Finally the nurse decided we should take him to his room to see if it would calm him down, so we came up to 9 north.  He still didn't stop.  Then she suggested we take him down to the garden.  We ditched her on the way in case she was a contributing factor to his continuing hysteria.  He did calm down some, but was still very upset.  When we got down to the lobby he said " 'NGE!" and pointed out the main entrance to the parking garage across the street (the only vending machine with non-caffeinated orange soda that takes credit cards is in the garage).  So in violation of about a hundred hospital policies, I carried him off hospital property across the street to buy him a soda (he was even still wearing his gown from the OR).  I was expecting to get tackled by hospital security the whole time.  He perked up a little bit when we saw a motorcycle police officer pull over a semi-truck in front of the hospital which is a triple bonus for Emmett (motorcycles, lights and sirens, and trucks).  He stopped crying completely and started laughing when the Orange Crush fell out of the vending machine and has been in better spirits ever since.  Throughout the rest of our night we split our time between the garden and the playground as he slowly learned how to use his hand and foot again.  He was especially excited to see a life flight helicopter land on the hospital in the dark with all the same flashing lights as the helicopters Grandpa flies with him.  He was also elated when another vending machine dispensed TWO packages of his favorite Sun Chips instead of one -- "two? TWO?! YAY!! AH-HAHAHAAH!"   We're so glad the day ended on a good note.

We have a lot coming up over the next week so please keep us in your prayers.  Sedation in the Procedure Unit on Tuesday to place his PICC line (and back to the real OR the following week to put the permanent line back in), then Wednesday is his MRI under yet another sedation to evaluate how the cancer has responded to  treatment.  If there's no evidence of disease we'll move on to maintenance chemotherapy.  If there's still tumor remaining our doctors will consider more intense therapy including high dose chemotherapy with stem cell rescue.  We're praying the cancer is gone and Emmett can start maintenance therapy.