March 8, 2019

The news of the day is that my port is infected with a gram negative rod bacteria. We should know tomorrow more specifically which bacteria. Sadly, this could mean the surgical removal of my power port if the infection can’t be wiped out with just the antibiotics. My neutropenic fever however is gone, so the antibiotics are working to some degree!

Where did these gram negative rods come from?? Well… most likely my intestines. I had a CT scan of my abdomen this evening, but won’t know more till tomorrow.

Today I was allowed the privilege of wearing scrubs instead of the oh-so-drafty.

Doing my best to look like a moody scrubs model

What is a Power Port?

It is an implantable pin cushion with a catheter. The catheter runs all the way next to the heart. It’s surgically placed right under the collar bone under the skin, with a second incision in the neck to guide that catheter into the vein. Ports are perfect for infusing chemo drugs since the infusions are delivered directly into a big, powerful stream of blood. Before I had mine placed I got chemo through an IV… my little arm veins were NOT impressed. Getting the port placed wasn’t unpleasant. I had local anesthetic as well as some anti anxiety drugs and some Andrew Bird playing in the background upon request. The incisions were glued.

The three days after getting it placed I learned just how important ALL my neck muscles are to me… no matter how small… and how I never want any of them put under the knife again. The most painful activities were riding in a car, and going from sitting to lying down. I also had an unfortunate incident where my dearest Marian (age 2) bonked her sweet little pigtailed head against my new device. I cried.

3 Days after placement

Since then, the port has been my friend. It’s accessed with one prick and I can put lidocaine cream on it an hour beforehand so I don’t feel it. Once accessed it can be used for blood draws, getting infusions of blood products, chemo, CT contrast fluid…

What does one do all day at the hospital?

Between doctor visits, taking meds and logging vital signs there is lots of time left over to catch up on all the things I don’t have enough time for in my normal life.

  • Prayer
  • Talking with my dear sisters… both the biological ones and the ones I’ve come to know and love from all the places we’ve lived
  • Getting to know nurses
  • Reading
  • Ballet training

Please pray…

  • Healing form the infection
  • That I can keep the port I have.
  • Intestinal… soundness…

9 thoughts

  1. We’ll pray for these things and everything you and you family needs. Push it out as strong as you can! Muchos besos desde Madrid y mejorate pronto.

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  2. As I read about the Israelites grumbling in Numbers, I thank God for your joy in the midst of pain and each new thing that comes up! May your Joy be contagious and a witness to all those who come in contact with you!
    “But let all who take refuge in you be glad, let them ever sing for joy. Spread your protection over them, that those who love your name rejoice in you. For surely, O Lord, you bless the righteous, you surround them with your favor as with a shield.” Psalm 5: 11-12

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  3. Heidi, I had a PowerPort in place until just over a month ago. I relate with everything you said about the initial placement, including the child head bonks, and my youngest was already three at the time, and I often thought what a mercy it was that she was at least that old to avoid more frequent threats. I will pray that the infection clears that you can keep this port while you need it! (I sometimes told my husband that the real reason it was called a “PowerPort” was because I would often joke that if I wanted to get my way/get away with something, I would just flash my port at the necessary party, because really, how can you refuse someone who has a port? I never actually attempted that strategy, though! I also told my husband right after surgery that his wife was now “hot (as ever 😉 ) …with an accessory!” May the Lord grant you healing and continue to allow you to maximize your hospital “vacation” from normal responsibilities while keeping connected to your precious babies through this season.

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  4. Oh, my, how lovely you look even in scrubs!! Elegance and line are your ballet strong points no matter what you wear. I am so thankful for the multiple updates complete with pictures… it keeps it real and less “scary” when I am not there with you.

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