Hey Sammybear, it's your mama writing. I'm pretty sure you haven't learned how to read or use a computer in my absence (although if you have, MAJOR props go to grandma for her puppy-training skills), but I still just couldn't resist the chance to send you a message.
Now before you even say it, I know I'm in the doghouse (yes, pun intended) for my recent extended absence. I know that being gone for 5 days and then coming home for one ridiculous night before leaving AGAIN for another week is hardly good puppy-mom etiquette. And while I know you're enjoying having both your grandma and grandad in town for a while plus extended visits with Aunt Erin, I also realize that it just plain sucks when your best friend and playmate goes totally AWOL. You're such a sweet puppy, Sam (random rocket-science experiments aside), and I'm so sorry that I keep having to leave you.
The problem this time, just so you know, was the port. You know that thing in my arm that means the nurses have to come once a month and you get to root around in their bags for fun things to chew on? Yeah, well while you're off snacking on rubber gloves and stethoscopes, the nurse is busy taking care of my port-a-cath, a permanent IV line running from my arm to my chest which has now become infected. So on Tuesday when they sent me home because my lung infection seemed under control, they had no idea that I was going to crash very suddenly overnight because of a full-on systemic infection from the line. Neither did I, and of course, neither did you. You were just happy, like any good dog would be, to have your rightful human home and back where she belongs.
And speaking of back, Sammy, I really am. As in, back in the EXACT SAME ROOM. I wasn't even gone 24 hours, so they managed to put me right back where I came from, which is nice because it kind of feels a little more homey. Only not really homey because, of course, you're not here. (Note to self: speak to hospital about establishing designated "shorkie visiting hours.") But yeah, anyway, back to why I won't be home sooner . . .
See, once they decided my port was infected yesterday, they sent me to have it taken out. So I went down to the procedure room and got all numbed up with lidocaine and they opened up my arm and started to remove the port. Sounds pretty simple right? Pop out port, pull out catheter, sew up patient. Granted, it's not quite as easy as it sounds, I'm sure, but still, none of us were anticipating any problems.
But then again, it is your mama we're talking about, Sammy, so maybe we should have been better prepared for total ridiculousness.
Step 1 went fine - the port popped out no problem. Step 2, on the other hand, not so much. The surgeon tried to pull out the catheter and I told him I felt a pain in my back, so he stopped. When he stopped, the catheter literally sprang back into my vein, sort of like a vacuum cord when you hit the "automatic retract" button. Weird. Okay then, so he tried again. Same thing. Seriously, the thing was stuck. Solution? Tuck the port back into the arm and proceed directly to step 3 (sew up patient), and then schedule port removal in the actual OR for the following day. And I wasn't too upset about it. After all, if I'd been happily nesting in some place for 9 years, I probably wouldn't want to leave either.
So today I had surgery in the OR to get my port removed, sort of like when you had surgery to get your . . . well, you remember your surgery, Sampson. Anyway, unlike you, I was able to remain awake for my surgery, but I was given some fun sedative drugs that made me nice and talkative to the surgeons. This time the plan was a bit more complex: open up arm even farther, remove port, try again to remove catheter, if that fails, slide larger catheter up around current catheter in attempt to gently dislodge catheter from vein, sew up patient.
Well, they tried Sammybear, but it still didn't happen. Turns out this baby is stuck to my vein with some serious scar tissue way up in my shoulder, and the only way to remove it would be through full on surgery (sorta like what you had) only no one wants to do that to me because of the risks associated with putting a CFer on the vent. So I'm kinda stuck for now with an infected catheter in my system (they did, interestingly, remove the actual port -- just snipped it off and put something on the catheter to keep it from sliding into the vein). The good news is that the infection is strep, not staph or pseudo, so it's very treatable and I'm already responding to the additional antibiotic they've started me on to attack the bug. So the infection as it stands now isn't so much dangerous. The bad news is that they can only use this antibiotic for 4-6 weeks, and after that they'll take more blood cultures. Since the catheter is still in there, though, it's likely that the infection will reoccur, in which case we're either going to have to decide how to treat it (we could alternate antibiotics, maybe) or go ahead with the removal. If I can somehow deal with this until transplant then they should be able to just remove the catheter once they're already inside there. Fun, fun, huh Sam?
Anyway, in the meantime I'm getting meds through a lame-old peripheral IV line in my hand. I've already blown one, and my left arm is out of commission until it heals from surgery in a couple of days, so let's hope they can find enough veins in my right arm! You'd have fun with me, Sammy, I have tubes everywhere! On Tuesday, once they're sure the infection is under control for now, they're going to give me an old-fashioned PICC line so that I can keep doing these IVs without continuing to blow veins left and right. And the good news is, once the PICC is placed then I can FINALLY get home to you! I know you can barely contain your little puppy self with all the excitement!
As for the future of the port (and the fun nurses with their magic bags of chew toys), well, I may or may not get a new one. They don't want to put a new one in if the old one is going to be a continued source of infection because it would just infect the new port (sort of like why they do double-lung transplants in CFers). So if in 6 weeks or so after I'm done with all the IVs the blood cultures come back clear and they think the old catheter is clear of infection, I can get a new line placed pre-tx. Otherwise, no dice. And they also seem to think I'll be transplanted sooner rather than later at this point, so it may not even be a major issue, since all ports would have to come out during transplant anyway.
So that's the story, Sammybear. I miss you madly, but hopefully now that we finally have this a little more figured out I'll be able to come home to you a much happier, healthier, and spunkier Piper.
And I'm sure you're already plotting some creative ways to keep me busy.
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
About This Blog:
This blog is about me, my life, my sometimes craziness, my disease, and my current journey as a double-lung transplant recipient. It's also a celebration of everyone out there with CF (and other chronic illnesses). It's for you, inspired by you, and dedicated to you -- the community that keeps me writing, living, and breathing.
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