Friday, September 20, 2013


I've been wanting to give you more details on Harlie's PICC line.  It is a central line that allows the patient to go home while receiving IV antibiotics.  This was Harlie's second PICC line, and it was necessary for the exact same reason...  infection in her jaw following jaw surgery.  Last time the culprit was a bone graft taken from her skull and implanted into her jaw (the bone graft died and an infection appeared 10 weeks post-op).  This time it is most likely because of some kind of bug living on the hardware that is still in her jaw following her jaw distraction back in July.  We are trying to leave that hardware in until October 30.

Anyway, here is one med that she was on - Zosyn.  The meds come in these cool balls that you hook up to her PICC line.  Once connected and unclamped, it just flows in.  This one particular med took an hour to infuse.

After it's done, it looks like this...

I think it's pretty cool.

Last Thursday, on September 12, we went for Harlie's follow-up appointments to see her pulmonologist and infectious disease doc.  She had been on IV meds for three weeks by then.  So, they pulled the PICC line out and put her on Clindamycin (another antibiotic).  She will stay on Clinda until the hardware comes out - currently scheduled for October 30, in Boston.

Here is what the PICC line looked like on her arm.

Here is a bruise that we must have given her while holding her arm during dressing changes.  When you have a PICC line, the dressing on top of it must be changed once a week.  And she's a fighter.

I told the docs who pulled it that Harlie is deceptively strong - so they should prepare themselves.  No one ever really believes me.  At first.  Then she fights, and they tell me they are shocked.  Her doc was so funny.  He told Harlie that he was going to have to go back and read more about Goldenhar because he didn't remember it saying that it came with super-human strength.  Cute.

She was happy it was gone, that's for sure.

This appointment was actually pretty fun, all things considered.  I think I might be full blown crazy to think a doctor's appointment can be fun.  But, I do love her docs.  And they are funny.  I told both her pulmonologist and ID doc about something that happened a few nights prior.  I had a really bad night one night and got virtually no sleep.  So, the next day, I was especially tired.  Her last IV med was given at 9pm and had to be disconnected and flushed with saline and heparin an hour later.  Tom said he would take care of it so I could get some sleep.

The next morning Tom asked me if I had ever had blood come back from the line.  No.  I thought maybe he had just pulled back on the syringe by accident when he flushed it.  So, I went in and saw what had happened.  Instead of disconnecting the med from the cap - he unscrewed the whole cap off!  Well, blood just flows right out when you do that.  And that's something we are not supposed to do!  He didn't realize it, of course, it was late and dark.  So, when he turned to get the saline syringe, she was bleeding.  Then he saw it, screwed the syringe on, flushed it and when he unscrewed it to get the heparin, the same thing happened (because nothing was stopping the blood from flowing out - since it was now an open line).  If you look at the picture above, you'll see the clear caps attached to the colored ports.  The med connector is clear, too, so I can see how it happened late at night in the dark, by a man.  ;-)  You'll also see the clamps.  He said he had to clamp it shut to keep the blood from coming out.  Whew!  We were one click away from a whole different story.  And since it was now an open line, the risk of infection was WAY higher.  Especially since she slept all night like that!  The next morning, I washed the cap and alcohol swabbed all parts, and put it back on.

I went to tell her doc that story and I started it with, "So, I let my husband do the last IV treatment the other night..." and he stopped me and said, "That's like starting a sentence with, here, hold my beer and watch this."

When you have conversations like this - it's hard not to have fun!

So, just to recap her antibiotic treatment - from July 3rd (date of surgery) to October 30th (date of hardware removal), which is 17 weeks, she will have been on antibiotics all but two weeks in that time frame.  Crazy.

When we got home from the appointment, I went straight to the refrigerator in the garage (those medicine balls are stored cold) and said to Brandy, "Which med does she get at 1pm again?"  And Brandy said, "None, they pulled the PICC line."


Wow, it's amazing how fast that routine set in and how crazy I was about trying SO hard to remember it all.

Of course, the past few days, she has been pointing to the same area where the infection was and signing "hurt."  And she flinches really bad when I brush her teeth on the bottom right (which is directly above where the infection was).  I cannot see anything amiss.  And she has not had any fevers (which she never does).  Clearly, I'm worried that we won't make it to October 30th before this infection overpowers the antibiotics.

I spoke with her infectious disease doc about this yesterday.  I would love to be able to take her in and get a white blood count (which is usually elevated when the body is fighting an infection).  However, that doesn't work for her.  Of course.  He said that when she was in the hospital in January (with a respiratory bug) her WBC was 11.5 (which is not that high).  When she came into the ER with the abscess, her WBC was 7.  That makes no sense.  That, combined with the fact that she doesn't get fevers (another indicator that your body is fighting something) means that her body doesn't fight infection on a systemic level (whole body affected).  It fights it on a local level - at the point of infection.

I don't know why she has to be so different in so many ways.  It makes keeping her safe and sound much more challenging.

So, the plan, should she get an infection before October 30, is for me to take her to our local ER, have them start IV antibiotics, and then have them transport her to Boston Children's.  Clearly, I am hoping it doesn't come to that.

The last time she was transported from an ER, was on a helicopter and I had nothing with me.  I had to call 911 from the house, and was in no way prepared for a hospital stay, especially out of town.  My phone died within a few hours and I had no charger, hadn't eaten, didn't have a toothbrush and had to sleep in the waiting room.  At that time the hospital's PICU was one big open room separated by curtains, and you couldn't sleep bedside.

Harlie was about 11 months old at the time and she was sporting a helmet.  This is a picture of her a few days after the helicopter ride.

11 months old
She was the sweetest baby ever.  Anyway, she was still really small, I think she was about 15 pounds at the time.  They put her in the pod thing to transport her and they couldn't shut the top of it because of her helmet.

Ahhhh, memories.

Anyway, where was I?  Oh, yes, she has been communicating to us that her jaw is hurting.  So, I emailed her surgeon in Boston, just to give her a heads-up and make sure she was on board with the plan.  She replied and said yes, plan is good, but that she's out of the country until the 27th.  So, we just have to get through another week with no abscess.  Then, every day after that is bonus.  If I were a betting kinda gal, I would bet that we aren't going to make it to October 30.  We'll see.

Oh, and if we do make it, we are going to have a Halloween party at our house for the kids before we go to Boston.  Thank you to all of you who gave me suggestions on how to give Harlie a Halloween experience!

Also, one more thing before I wrap this one up... last week we received an anonymous donation to The Harlie Fund.  It was very generous.  I have no way of thanking who donated it, other than here, so thank you.  We are so thankful for all the wonderful people who give so generously to us.  We just couldn't do it without all the support and love from you all!

Much love,
Christy xo

1 comment:

Susan said...

A Halloween party is a great idea. I hope you get some help with that.

I'm so glad that PICC line story didn't have a different ending.