Neutropenic

February 25- 27, 2014

Charly started running a fever late Sunday night (she was over the 101 mark).  She was pretty upset that she was about to get dragged into the ER with the fever.  When I called the oncologist on call, and based on Charlotte’s ANC numbers from 2 weeks before (1900), the doctor told me I could watch her and if her fever hit 102, to bring her in.  Charly hovered at 101.5 all night.  She woke the next morning and told me she was so happy she didn’t have to go to the ER the night before.

I called the clinic first thing in the morning, figuring they’d want to see her.  They told me to bring her in.  When her regular oncologist saw here, he was not too happy that I had been told that Charlotte could stay home.  I pretty much got the idea that somebody was going to be chewed out royally after he left the room.  They hooked Charly up to an IV and ran antibiotics.  This is the 4th time since she was diagnosed that we have had to do this, 3 of which were in the last couple months.  They took blood to check for infection, and a nasal swab to see if they could identify the virus. 

Every other time we have had to do this, we have been sent back home once they have finished the antibiotic IV.  Unfortunately, this time Charlotte’s ANC (Absolute Neutrophil Count) was 200.  Her ANC is how they measure her ability to fight off infection.  Anything below a 500, and they admit the child.  Dr. Barnett came into the room and said, “Well, I hope you brought your pajamas!”  I did not.  I figured we’d go home again, and decided NOT to bring our overnight bags.  We were warned to always bring an overnight bag when we bring her for a fever, but she’s never had to stay, so I totally forgot to bring them for the FIRST TIME EVER.  Apparently that’s another version of Murphy’s Law – go to the hospital unprepared to spend the night, and you will be spending the night.

We had to wait in the clinic room for 3 hours while they tried to get Charlotte a room in the Immuno-compromised unit.  Primary’s is undergoing major renovations, so our time in the clinic was accompanied by the sound of jack hammers from the floor below us.  Charlotte was miserable.  Uncomfortable chairs, coughing, fever, jackhammers, lunchtime and no food… 

Waiting for a room

When we finally got a hospital room, I called my mom and she came to stay with Charlotte while I ran home for our overnight bags and to get Naomi situated. 

Charly and I ate popcorn, watched Ponyo, and ordered room service.  It would have been the perfect night, except for she had to sleep with her port accessed.  She hates that.  Around midnight she suddenly called out, “MOM!” and I jerked out of sleep.  She had rolled over in her sleep and popped the IV out of her port.  There is a ¾” needle that accesses her port, directly in the center of her chest.  It pokes out about an inch from her chest, and being a fellow stomach sleeper, I can imagine how awful it is to try and sleep with that protruding from her chest.  She’s only had to do it a handful of times, but she HATES it.  She also has never accidently popped the port out.  

The nurse had to re-access her right away, since the port hadn’t been “locked” by heparin before it was de-accessed.  My nursing friends would know what that means, but basically it’s a chemical they put in before they de-access the port to prevent the blood clotting in the line.  Otherwise, if they hadn’t been concerned about clotting, they would have let her sleep without re-accessing her port.  Charlotte started to cry, because the nurse said she didn’t want to wait the 30 minutes for the Emla numbing cream to work.  She told Charlotte they’d use the freezing spray instead.  Charly doesn’t like the freezing spray.  Eventually, we got everything back together and we all went to sleep. 

Room service for breakfast!

The next day was a waiting game.  Finally, about 2pm, they let us bring Charly home.  She had to keep her port accessed however, because we were to administer IV antibiotics twice daily for the next 4 days.  We were also to stop giving Charlotte her nightly chemo until they told us to begin again.

The IV antibiotics were very interesting.  There are some innovative, smart people in the world.  The “medicine ball” they delivered the antibiotics in is proof of that.  We would take the IV, clean off the tip with alcohol, push a syringe of saline in, then attach the ball to her IV.  When we would release the clamp on the ball, through pressure of an interior balloon, the medicine slowly pushed into her IV for the next 30 minutes.  When it was done, I would detach the deflated ball, push another syringe of saline in, and then a syringe of heparin.  I gave Charly the morning dose before I got into the shower, and the home health nurse came to help Sean his first time in the afternoon.  On Thursday, the home health nurse came to draw blood samples.  By that afternoon, we were approved to discontinue the antibiotics and de-access Charlotte.  Charly was re-started on chemo pills in the evening, but they thankfully decreased the dosage. 

We were also cleared to take Charly on the planned girls’ trip to Orlando.  I had booked tickets and hotel back in December.  When she was admitted less 10 days before the trip, I started wondering what I’d do with the tickets.  The oncology nurse I spoke with commiserated with me.  “This was supposed to be an okay time to plan travel - now that we are done with the hard chemo and in maintenance!  What do I do?  Should I cancel the trip?”  I complained

“Yes, I know.  It’s hard to plan these things.  We don’t want to tell anyone to stop living.” The nurse replied, “We’ve had some kids that spend their entire vacation in a hospital, because they caught something on their trip and started running a fever.”

We decided to go ahead as planned, but I will admit…when Charly started to cough and sniffle the night before we were to go home from Orlando…I laid awake with visions of missing our flight home, stuck in a strange hospital and trying to figure out how to get home.

Charly after my sleepless night.