What a drain!

September 6, 2012 at 8:29 am (Living With Chronic Illness, Medical)

As you recall, I had an abdominal CT scan and they saw two fluid filled sacs. I had been instructed that if I developed a fever, had sharp abdominal pain, felt fluish or nausea, those were conditions to seek out emergency treatment.

Although I had an appointment to meet with a new surgeon this past Tuesday to discuss these sacs, it was not meant to be. Monday I awoke feeling fluish, but I commonly feel that way from time to time, so I just stayed in bed and rested. Then in the afternoon I started moving around and doing stuff. By 8pm, I was definitely nauseous and had abdominal pain. I was feeling warm, and lo and behold my temp was 101.

It was decided to head to Johns Hopkins, as that’s the hospital I hoped to have any procedures that might be necessary. It was written clearly on a white board as we entered that there was a four hour wait to see a provider, but somehow I didn’t let that sink in. In total, we waited about five hours to see an ER doc, and the first thing he did was order yet another abdominal CT (to see if there were any changes). There weren’t any, but my pain was increasing and something had to be done about these sacs, so I was admitted.

Lesson learned: JH is a great hospital and overall I’ve had a good experience. However, I would only choose to go to JH’s ER in an ambulance, as five hours is a bit ridiculous.

What’s been amazing is the night/day difference with my experience at Shady Grove re: pain meds. Whereas at SG, I was practically begging for what had been prescribed and frequently had to wait hours for a nurse, all of my nurses have been pro-active about meds, stopping by to remind me it’s almost time, and being here a little early or on the nose. It’s also worth mentioning that I feel my pain complaints are taken way more seriously here, as I am actually getting good pain relief.

Anyway, the sacs. It took a little while for the surgeons to decide what to do, as they didn’t have the notes from Dr. WLS. In the end, since his office *still* hasn’t sent them, they decided to move forward. Part of the issue is they need to know what kind of mesh was used, because it may be the cause or an irritant to the fluid collection/infection.

Yesterday afternoon, they used a cool x-ray camera to insert a large drain into the bigger of the two sacs. The surgeon told me this (likely) abscess is almost the size of a basketball! Jeepers! They also sent fluid and tissue samples to Pathology to see what needs to happen next: I may need more surgery, or a long course of IV antibiotics, or something else. The smaller sac is small enough that they’re hoping that the antibiotics will just kill it, but they’re still keeping an eye.

The sucky part of the procedure was that since my blood pressure was very, very low, they couldn’t use twilight sedation as promised. In fact, I was awake and felt the whole thing. They said they used numbing agents, but I was in a great deal of pain. My abdomen is still very achey and throbby since it happened.

The future from here is a little uncertain. I may need more surgery. I may need to be monitored until the drain reaches a predictable amount of flow. I may need a PICC line again. It’s a long shot, but they’re even concerned that I might need more hernia repair. So I don’t know if I’m coming home tonight, or three weeks from now. No clue.

Home. I can’t honestly blog about this experience and leave out the part where I feel so out of control of my element. I know Shady Grove, and even though JH is far superior, it’s still unfamiliar. I also know way more people I can ask random favors of in the Rockville area than I do Baltimore. And when this is all over, I don’t have the luxury of going to a place where I feel 100% comfortable and in my own space. Spark and Fuego have graciously been putting me up, but I have to leave the bed every morning so she can use her office undisturbed; in the living room, there is all manner of cats and dogs, which is nice for cuddles but bad for giant open wounds. If I’m in JH long enough, I could be going to Hagerstown, where things aren’t really set up yet.

I have talked with my spouse about using the townhouse, but he is unwilling/unable to find another place to sleep for longer than a night or two, and if we cohabitate then the clock to divorce re-starts, as we can’t share a roof for a year before we can file for uncontested. And that’s a whole can of worms I’m not opening in this post.

Again and forever, I have to praise Rave for being a superhero. She has been with me through as much of this as she can, sleeping on the little couch and eating little scraps of food. We had a few people (to whom we are very grateful) who have come by to relieve her so she can take breaks and run errands and such. (If
you’re reading this within a few days of publication and are willing to take a shift, you can email her at ravesblood@gmail. Please be someone I know fairly well; I’m kinda shy about letting acquaintences into my room at the moment.)

That’s where things are at. I should be seeing the surgeon today to get the results from Pathology and find out what the next steps are.

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9 Comments

  1. facingthefireswithin said,

    I am glad to hear you are at least getting good pain management. I remember visiting you at SH and how that went.

  2. Divine Twin Diversions said,

    Tough on the divorce stuff. You can live in the same house and not “co-habitate” in Virginia, which makes a huge difference. At least they drained that one sac and I bet that that will help. Hopefully more good news comes soon.

  3. Fala said,

    Always with you in spirit, should you want it… wish I could be there in person. All my hopes that this comes through smoothly.

  4. Wintersong said,

    This is basically what I imagine happened to Violet Beauregarde, except everything that came out of her would be blue đŸ™‚

    Seriously though, we’re all thinking and praying for you!

  5. Elizabeth said,

    Oh crap, Del. I wish I was closer. I’d come sit there and try not to be funny so you wouldn’t rupture anything else. Am keeping you in my prayers.

  6. EVCelt said,

    Basically echoing “facingthefireswithin” here… you are, have been, and will remain in my prayers…

  7. steelbluelily said,

    I’m glad you are getting good care, and I hope they can fix all of this for you soon.

  8. JJ said,

    I am reading this post late and praying that you are improving significantly and that everything in the housing situation has been resolved. I wish I was closer and could help. You are continually in my thoughts.

  9. virtual office said,

    This site was… how do you say it? Relevant!! Finally I have found something which helped me.
    Thanks!

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