The Waiting Game

I’ve decided that anytime a patient is admitted to the hospital for a bacterial infection, their room should be equipped with a speaker that plays the Jeopardy theme song on a loop. Why is that? Because your treatment and ability to go home is dependent on what is growing (or not growing) in the lab. Even when the bacteria presents itself in the sample, it can take a few days for it to develop into something identifiable.

As of right now we don’t know if the bacteria is the same as last time (which is probably the case) or a different type. Type dictates the kind of antibiotic and that dictates the plan for sending you home.

So for now I’m on antibiotics that have the greatest likelihood of knocking out what they suspect it is. My good friend vancomycin…ugh.

Yesterday was a rough one physically as I was a pukey miserable mess. My poor parents and I were downstairs in the lobby at Au Bon Pain (field trip!) when I knew my stomach was about to hit the reverse switch. Even with an injured rotator cuff my mom was quick to her feet and wheeled me toward the bathroom to this little alcove where I could vomit without a million eyes on me. If I actually had hair to hold back, I’m sure she would have done that too. Thanks Mom 🙂 There was a lot of that yesterday and it took a great deal of energy out of me.

Later that day…

In an effort to be proactive I was rolled over to Rhode Island Hospital and my port was removed in the operating room. Typically ports can be taken out in a doctor’s office or hospital bedside but mine has been in there so long with so much tissue grown around it, Dr. Robison didn’t want to torture me.

While I was in the OR they also ultimately decided to put in the PICC line that we had discussed. Initially I was freaked out by the idea of a central line in my arm. Now that I have it, it really doesn’t bother me. I can’t feel it and I still have full use of my arm.

What makes it different from the port that I had is that we won’t have to keep “accessing it” or putting in a needle to use it. It’s a “double lumen” meaning there are two little catheters that hang down. They can be used to draw blood, administer medication, chemo, TPN, etc.

The procedure itself wasn’t terrible. I was awake for it but they gave me drugs so I wouldn’t feel it. They also utilized a cloth near my head to shield me from seeing the procedures. The worst of it was when they injected the site in my chest to numb it. After a huge involuntary yelp they gave me stronger pain medication and the rest was smooth sailing.

So here’s the PICC-

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It’s also covered by this stretchy sock thing so:

1.) I can tuck in the little catheters when they aren’t hooked up so they don’t catch on anything

2.) No one has to see it. I bet there are some cute PICC line covers out there. Hmmm…making a mental note to look on Etsy later.

Overall the PICC line is a good alternative to the port for now. The only downside is that a PICC line’s lifespan is not as long as a port so this is a short term solution. Eventually we plan to place a new port in my chest.

In other news, I’m in slightly better spirits today. My anger has started to subside into acceptance.

jack_donaghy__s_five_stages_of_grief_by_cocohorse-d5q43v7

I want nothing more than to feel good and be home but I know I just need to keep my mind busy, buckle down, and move with the process.

Before I sign off here to do another rousing round of sudoku, I want to thank everyone from the bottom of my heart for continuing to make this journey with me. I have been on the receiving end of immense kindness from people that I have met in all stages of my life (and even some people I haven’t met!). Your love and encouragement helps me to lift myself up and dust myself off during each of these set backs. Thanks again ❤

 

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18 thoughts on “The Waiting Game

  1. Thank you dear Jessie ~ we want to have a helping purpose supporting you through all of the stages of this lengthy journey we are on together. Do you know the Hawaiian Ho’oponoono meditation ?? I love to use to rest myself, for the heart chakra. Love and light, Namaste Franne xoox

  2. Jess, obviously I don’t know you but I went to school with your cousin Phyllis. As I read your blog I am so saddened by what you are going through. I admire your courage and I certainly don’t blame you for being angry. You are very brave and I believe God will pull you through this. Remember it’s ok to cry. Blessings…

  3. Hi Jess, I have been following your story through Sara on Facebook. . All I can say is you are a woman of strength and such perseverance . I am always sending prayers and love…🙏🙏🙏❤️❤️❤️

  4. Jess, thank you for taking the time to post this! We are all going through this with you, and your feelings are incredibly tmportant to me and to all your friends. Give ’em hell Jess, and stay strong!❤️❤️❤️

  5. Each step is action toward feeling better. Thank you for keeping up with your blog through all the ups and downs. You are a wonderful writer which I know from your posts you take seriously.
    I like the idea of not getting stuck for port access. I hope the PICC line serves you well for a while. I pray for you every day Jess.

  6. Thanks Meg, the writing certainly helps me to process how I’m feeling and fill in my loved ones simultaneously. Hopefully the PICC will serve me well for a stretch.

  7. Hi Jessica,
    Kurt had told me you were out and after I tried emailing you, I am so glad I stopped by academic advising to hear that you had this blog. I have been following it ever since! (And I’m sure Kurt is too 😉 That commencement picture was so nice). I miss you and I pray for you every day. You are such a great person and it really bothers me that you have to go through all of this! Your sharing of your story so honestly is truly health communication like I studied in class and I’m sure it makes a difference in everyone who reads it. Inspiring and educating – I appreciate everyday more, so I don’t sweat the small stuff as much. I’ve learned a lot already about medical devices. Knowing the process of what could be coming makes me not as scared that my uncle, who has leukemia, starts chemo and a drug trial this week up in Boston (Mom absolutely LOVES how advanced Boston is – a totally different world than medicine in RI. Not sure if you have considered taking a trip to their hospitals if you haven’t already). I also donated blood this week and I thought of you! Stay strong and keep in touch. It sounds like you have a great support team of friends and family surrounding you. (And I like the funny memes so keep those up 😉 )

    • Warrior Jessica, good functioning with your new, “ports” and much, much, much, much comfort for you!!!! Hope you hear the music you love!!!!

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