Port Infection: Doing Everything Right (Part 3)

Note: There won’t be a ton of “me in the hospital” pictures in these posts. I only kept one of myself with Happy and R.J when they came to visit one day.  I asked my mom not to take any and only took pictures of my chest and surgical sites for medical documentation. I felt awful in the hospital and didn’t want to smile for the camera or have any visual memories of the experience.

From day one I kept telling myself: this isn’t going to be anything. This isn’t a “situation”. I didn’t need to make it feel any more dire than it was. This would be a few days in the hospital, or a week, and a surgery, or two surgeries, and recovery—and then I’d be home, and I’d be back to working, and I’d be walking Happy.

I was determined to make this situation as positive as possible. Here’s how I tried:

I Tried Not to Overeat from Anxiety or Boredom

I asked my friends not to send cookies. Why? Because last time I was in the hospital someone sent me THREE POUNDS of rainbow cookies. I was depressed, drugged, unhappy.

So damn straight, I ate THREE POUNDS of cookies on my own.

Actual footage of my last hospitalization

If I was going to be sitting in a hospital bed for a week, I wasn’t going to be over-eating and gaining weight doing it. Guess what though? When you’re not starving from being NPO or on a ton of meds—hospital food is vile. So I asked my mom and R.J to bring meals from the outside.

And here’s what happened instead of following a healthy diet: my friends took my warning as a challenge and sent tons of cookies which had me hysterically laughing when they arrived at my door.

R.J told me he’d bring me whatever I wanted so I requested my favorite thing: poke bowls from a place called The Poke Company not far from the hospital. I was inhaling these things. Which were technically healthy, but if I was going for a low-calorie kind of stay I was failing miserably. (Honestly, there were worse vices I could have drowned my sorrows in then extra-large bowls of fish eggs and seaweed salad.)

When I wasn’t eating my feelings, I was trying to forget I was sick at all.

I Kept My Room Clean and Got Permission to Shower

I’m not sure what this image is but it accurately describes how it feels to take a shower while in the hospital.

I don’t trust hospital janitors. Sorry, but I know you used that same damp cloth to wipe down someones toilet before you went at my bedtray. So I always come to the hospital armed with enough cleaning supplies to disinfect a daycare bathroom. I used lysol wipes to wipe down the sides of my bed, remote, phone, bedtray, call button, the part of the IV pole I’d need to grip to get in and out of the bathroom…

I sprayed down the bathroom and kept a handy bottle of sanitizer on my bedtray for myself, visitors and doctors.

I also sprayed down my sheets with watered-down essential oil (I ran out of my travel-size fabreeze). I brought in my own clean blanket and neck pillow.

And I obtained the most important thing when it comes to feeling like a human in the hospital: permission to shower from my doctor.

In the days leading up to my surgery I spent an hour in my hospital room’s shower. I knew there were surgeries in my future and I didn’t know if I’d be able to shower after them, so every day I shaved, scrubbed, and washed my hair whenever possible.

This was a huge mood booster for me and it was one of the daily rituals that helped me feel in control and calm.

 

I Over-Communicated With my Medical Team

I was SURE that everything that went wrong during my last infection was because it was an emergency situation. This time would be different because we would be so careful in planning the surgery and choosing the surgeon.

I spoke with the hospital’s surgical team and they suggested a vascular surgeon. His partner came in, I discussed the surgery with him. Then I discussed the surgery three more times with the actual surgeon who was going to perform it. I felt sure that all my questions were answered, that he was aware of my allergies and adhesion issues. We talked about how he would insert a wick into the wound instead of packing it. 

I spoke with the infectious disease doctor about how long I would be on IV antibiotics for, and how long after the surgery we would wait before I could get the new port inserted and what my blood cultures had to show to proceed to each step.

I had a GI consult who offered me plenty of new meds which I turned down for short term nausea solutions (carafate and dissolvable oral zofran) to deal with the upset from the antibiotics.

And I had a great GP managing the whole thing, making sure I was in a private room with no chance of an infected roommate, who was communicating my history to the new specialists on board, who was making sure my medications were ordered, that all of my questions were answered.

To be honest, there was a point where my mother, my husband and I all looked at each other and thought: this is a terrible situation and this is the best possible way it could have been managed.

It looked like everything would go according to plan, I would have the old port out, the wound healed, the new port placed, and I’d be home and back to work all in the span of two weeks.

We did everything right.

We just didn’t have control over the fact that I’d break out in hives from chlorhexidene the night before the surgery.

We didn’t have control over the fact that the minute the surgeon tied that last stitch, he’d go on vacation—never to be heard of seen from again.

We didn’t have control over the fact that just because my blood culture said I didn’t have an infection, didn’t mean there wasn’t still bacteria in my scar tissue, that would almost immediately infect the groshong catheter that would be implanted three days after the old port was taken out.

We didn’t have control over the fact that the surgeon didn’t communicate to me before the surgery that a Groshong port is stitched to the chest externally with a piece of plastic. (WTF?!)

We didn’t have control over the fact that I would be allergic to the stitches and they would rip through my skin.

We didn’t have control over the fact that days after that the tube would start draining puss (EW) right after I was finally home from the hospital.

…and that was only the middle.

Truly a Hamilton moment.

Stay tuned. 

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