Battered but not broken

It is DEFINITELY good to be home. I don’t think I slept more than 2 or 3 consecutive hours the whole time I was in the hospital. It is so nice not to constantly wake up to beeping machines or a parade of medical professionals coming in to poke and prod and talk to me. Of course, I don’t think I’ve gotten more than 5 consecutive hours of sleep since I’ve been home thanks to my antibiotic schedule, but somehow it feels better than what I got in the hospital.
 
I still have the JP drain, which might stay in until my follow up appointment in 2 weeks. It’s not super comfortable, but it’s definitely not as bad as the chest tubes. Katherine and I recently took stock of all my new battle wounds. I have one nearly 5” long incision, 3 smaller incisions where they put in cameras during surgery, and 2 small incisions where the chest tubes were. We also counted my staples: 24 in the big incision, 7 in small incision #1, 5 in small incision #2, and 3 in small incision #3. That’s a total of 39 staples, and they are NOT comfortable. Some of them are on my back, so there’s really no way to avoid laying on them unless I’m standing or sitting upright, so they’re constantly being irritated. Unfortunately they probably won’t come out before my follow up appointment.
 
I’m still very sore, and sometimes a whole lot more than just sore. I have some pain medications that I take regularly every 8 hours, and also some as-needed oxycodone, but right now I need to take that pretty regularly too or the pain gets out of control. Stupidly, I had to fight a bit to get them to send me home with a halfway decent amount of oxycodone. In the hospital I was taking 10-15mg every 4 hours, and even with that sometimes I needed Dilaudid for breakthrough pain. I asked to have my home meds be in 5mg tabs so I could modify the dose as needed and gradually bring it down, but somehow they decided that 20 tabs would be enough. The doctor said I shouldn’t still need that much this far out from surgery and that they don’t typically send people home with higher doses. I pointed out that they knew I was working towards discharge, so why hadn’t they started bringing the dose down days earlier? He did agree that was a mistake on their part. In the end they gave me 45 tabs, and I’ve been working on taking lower doses less frequently. Which resulted in some painful hours Sunday morning when I tried to be tough and only take 5mg after not taking anything for over 8 hours. I told Katherine I felt oxy-shamed by the doctor, and thankfully she helped me see sense and take what I need to be semi-functional. The whole thing is dumb and confusing. In the hospital they really pushed pain management and emphasized how important it is for me to be able to take deep breaths and cough to prevent pneumonia and other complications, but then suddenly when I’m going home all that goes out the window and I “shouldn’t need that much.” Hopefully what I have will be enough, but I did recently connect with a Palliative Care doctor, and before surgery she reassured me that she will help with pain management if needed.
 
Katherine and I are also back on the IV antibiotic train, which means running 3 hour infusions 3 times a day. That will definitely last at least 2 more weeks until my follow up appointments, and possibly significantly longer than that. We’re both basically shuffling around like zombies just trying to get through each day. The tricky part is that even though the mesh they put in is much lower risk for harboring infection than the suture was, there is still some risk, so ideally they would like to continue the antibiotics until the mesh has fully dissolved. Unfortunately the mesh doesn’t show up on imaging, so I guess we’re just kinda deciding when to stop based on vibes or something? Which means they’re more likely to err on the side of caution and go for a longer course than a shorter one. We’ll see what my Infectious Disease doctor has to say at my follow up appointment.
 
On a more fun note, I did finally manage to make a couple Pole People a few days before being discharged. I was on a different unit this time, so I had a new audience who really loved them. These Pole People even got to have an exciting adventure! My antibiotic was running when it was time for my bronch, so the IV pole came with me down to the OR, Pole People and all! I also have a BUNCH of great new stuffed animals thanks to Katherine! The cat and the otter are new additions to the Bronchoscopy Collection, since I had 2 bronchs while I was inpatient, and the big fluffy Squishmallow is for the surgery! Someday we might end up needing a room just for all my medical plushies!
 
So that’s where things stand so far on the current medical journey. It’s still too early to see a light at the end of the tunnel, but I think surgery might have been the peak of this mountain, and hopefully now we’re finally on our way down. I’m battered and bruised, and Katherine and I are both utterly exhausted, but we’re slowly making our way to the finish line. We’ll get there eventually!