Monday, October 20, 2014

No More Port

Today was Charlotte's surgery to have her port removed.  Primary's had us scheduled to have surgery at 11:30am, and wanted us to check in at 10 am.  That meant we started our drive up at 9am.  By the time we finished and got home, it was almost 5pm.  Long day, most of it waiting.  Waiting to move from the check-in room to the weigh-in room.  From the weigh-in room, to a prep operatory (where I had to wipe Charlotte's entire body off with Chlorhexidine wipes, an interesting tidbit for those in my audience who have interest in infection control).  From there, Charlotte and I waited to be taken to another pre-op room by the nurse practitioner, who looked concerned about Charlotte's reappearing rash.  I assured her we have been battling it since January, and had hopes that it might clear eventually, now that she's done with chemo.

The final pre-op room only had a few patients in it.  We waited there, watching cartoons, until her anesthesiologist came in to chat.  He promised to give her lemon-raspberry scented laughing gas, and when she was totally out, she would receive her IV.  He said he'd take Charlotte momentarily, but warned me not to let him take her until we had spoken with the general surgeon.  The general surgeon finally came in about noon.  He told me the surgery would take 30 minutes and what follow-up care would be needed.  He said he would make an incision where her scar was, and since the scar was pretty large, he would try to remove some of the scar tissue and use glue to seal the wound after.

A few moments later, the anesthesiologist came and gathered Charlotte and I.  He led us down a hallway and to a set of doors.  "Mom," he said, "this is where we say goodbye to you."  He gave me directions to the parents waiting area, and walked off with Charlotte.  The last time Charlotte had surgery in the same-day surgery department was 2 years ago - to put in her port, get a bone marrow sample, and her first spinal tap.  Every other spinal tap she has had since has been in the Primary Children's RTU (Rapid Treatment Unit) or conscious sedation in the surgery suite adjacent to the oncology clinic.  We only used the RTU for the first couple spinal taps.  They would let a parent stay with her until she was put under general anesthesia, then they would escort the parent out to the waiting room.  When she was placed under conscious sedation in the clinic, I never left the room at all.  Watching her leave me with the doctor made me want to cry.  She's so brave.  She just gave me a hug and waved at me as she walked away.  I wanted to hold her hand a little longer.

About 20 minutes later, the doctor came into the waiting area.  He asked me to step outside, and just leave my belongings there.  He sat me down in the hall and told me they were having problems.  Her port had calcified and was resisting being removed.  The doctor said he was pulling as hard as he dared, and he didn't want to pull harder and potentially cause damage.  Her line was wound up under a vein under her clavicle.  He said he could do 2 options.  1.  Pull out as much line as he could and cut off the line at the point it was resisting removal.  They'd seal the line, and leave it in her body.  He'd take an xray and have us come in tomorrow to take another one to see if the line had moved.  2.  He could make an incision in her clavicle and try to fish it out that way.   The surgeon wasn't wild about option 2, and neither was I.  There's a lot of muscle and nerves, and not to mention another scar.  I asked the surgeon if leaving in the line would mean we would still have to bring her in whenever she had a fever.  He said he wasn't sure, he'd call our oncologist to see what they had to say about it.  He also said that if he closed Charlotte up with some of the line still in, and it appeared to be moving after, we would need to bring her back in to have cardiology go in and take it out.  However, he suspected that with how hard he was trying to pull it out, it was going to be staying put.

I told him that I definitely thought that was the better choice, and he went back into surgery, and I went to go bite my nails and text Sean in the waiting area.

Another half hour, and the surgeon came in, smiling.  "After I went back in, I tried pulling on it some more, and I think I was able to get it all out.  We'll have them take an xray, and I'll talk to you in recovery once I get a chance to see the xray.  She's doing great."

I was so relieved.  Thankfully, the xray didn't show anything left behind.  I peeked at it after the tech took the image, and although I'm not a radiologist, I remember seeing Charlotte's port line when they took an xray of her chest in January when she had that hideous cough.  I remember how her port appeared in the xray, and how the line snaked up and around her clavicle area.  I remember being amazed at how long that line appeared, and being in awe about how somebody slowly fished that line through her tiny body.

After recovery, we headed up to the oncology clinic.  Dr. Barnett checked out Charlotte's scar, and expressed delight at how nice it looked.  Most of the kids apparently get the old-school suturing, not the crazy glue seal that Charlotte received.  Her blood levels are also looking great!  Her white blood cells and red blood cells are normal.  Her bilirubin dropped from a 4 to a 2, and her ANC is nice and robust, which is everything we want to hear.

Charlotte's doing well.  She's a little sore, so I told her she could take tomorrow off school.  We'll see how she does tomorrow.  Her oncologists originally told me she should be fine to go to school the day after, but her surgeon said she might be pretty sore.  I imagine so, with all that tugging he had to do.  She's been told no baths or swimming for the next couple weeks (showers are okay), and to not do any monkey bars or strenuous activity for a few days.


One final piece of good news - Now that the port is out, we have to go to the Primary's lab to get blood drawn a half-hour before every clinic appointment.  The oncology nurses don't draw blood in the clinic if you don't have a port.  Charly's been very unhappy about losing her port, because she did not like having a vial of blood drawn from her elbow.  Dr. Barnett told me today that they can do all the necessary blood tests with just a finger poke!  No vials of blood necessary!  I was so thrilled.  Charlotte is still leery, but I told her it would be a real quick poke and wouldn't hurt as long, and it would be a lot easier.  We go back in another month, so we'll see how she takes the finger poke then.

It was a long day, but a good day.

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