Since the parents don’t like me posting pictures of my incision on here…. close your eyes and imagine 2 big craters along an otherwise healed over Mercedes Benz shape – a “chevron” they call it. That would be my poor, still-swollen abdomen.
Rewind to that video I posted below. Literally 1 minute later, I went to change the dressing on my incision, and it seemed to be extra yucky and oozy and had well, to put it nicely, an odd “odor.” Being an almost-nurse, I knew this was cause for alarm. Two days prior, my doctor swabbed the two dehisced (torn open) spots, sent them to the lab, and one came back infected. They said it wasn’t a big concern unless the wound itself looked worse or I developed a fever. So afebrile (fever-free), I went on with my week, no problems. Then came 1am on Friday night, or umm, Saturday morning. Late Friday.
With this new situation on my hands, I had no choice but to call the liver coordinator on call and see what I needed to do. After going to the ER last week when the drain stitch was removed and I developed a major leak, that was the last place I wanted to go to again. But, the coordinator assured me I needed to get to the ER – not my regular, local ER, but of course the Cleveland Clinic ER so they could access my entire chart and the swab culture results. Right.
So we drive an hour up, me and my mom half asleep.
To make a long story short, lots of dilaudid and morphine and nubain and bendadryl later…. the ER resident cleared me, the ER head doctor wasn’t sure, and we ended up waiting till around 7am when the staff transplant doctor would come in to round and could stop by the ED to check out my incision, sort of like a 3rd or 4th opinion, just to be safe. After all, a staff transplant doc would know the situation much better.
Without any warning, the doctor – whom I’d never seen before – came in with a familiar resident at his side, and he immediately got out forcep-tweezer-things and started pulling out everything even close to my dehisced spots. He was debriding any infection, relentlessly and forcefully, that I figured out. My mom was mad, and I was even madder. “What are you DOING?!” I, tired and drugged, admittedly demanded. “Well if I told you, you wouldn’t let me be doing it.” (Excuse me?!) I begged him to stop, but by the time we were done arguing, he was done. I again used my demanding voice, this time in a helpless plea for drugs. He rudely told the resident to pack my incision (packing debrides wounds), and out he went.
Bad experience in a dirty ER at the place that’s supposed to give you “World Class Care” and is ranked #1 in so many specialties, #4 hospital in the country, #1 transplant center in the area, maybe the region. Right.
The resident was one I’d known since being in the hospital, I forget her name but she is from Spain, and she’s very sweet. I looked down and couldn’t believe what my stomach now looked like – instead of a yucky looking line with a little spreading, I now had two craters – one round, one long, and the keywords here were deep and open. Pink, shiny tissue, deep and wide. All I knew was this was several steps away from being previously stapled together, neatly healing in a straight line.
No antibiotics because the doctor picked out all the infection, and no antibiotic ointment as suggested by the doctors earlier in the week, because they like to keep the incisions dry. While with the packing, they want to keep them wet. Confused? Yes, please.
So fast forward to now. We’ve been doing wet to dry dressings at home, twice a day, with our stash from the ER – packing strips, sterile saline, abdominal paddings, applicator sticks (super long Q-tips) and lots and lots of tape. It’s been a nightmare. Since my stomach is so swollen, I had to teach my mom how to do the packing and dressing changes because I can’t see the holes when I lay down. Haha
They finally decided to get CCF Home Healthcare in today, and now someone is coming twice a week to measure the holes and make sure they’re actually getting smaller. Today I measured in at like 1.4cm deep by 4cm, the other I’m not sure on (over 10cm?) but she said it looked like a shark bite!! Thanks.
Kind of like people trying to compare C-section scars with me (okay, you had 12 staples – how is that like the 50+ I had?), saying I’d look cute pregnant (I’m still swollen and I’ve been told multiple times I’d make a cute mama… inappropriate), or the doctors who won’t give me pain meds because “By 1 month post transplant, patients only have higher chances of getting addicted.” Yes, but does the average patient have 2 craters in her abdomen? Didn’t think so. My home healthcare nurse said I should at least be on fentanyl patches since I’m allergic to Percocet and Vicodin but I doubt it. So I’m toughin’ it out. For now, at least.
Good news, though – the home healthcare nurse said the more protein I consume, the faster this will heal. She said if I double or triple my protein intake (which is minimal seeing my appetite is zero) that I’ll be in one piece in no time. So what did Mom do today? Went and bought be a ginormous container of protein powder! I ate tons of chicken for dinner and then downed 34g of protein in the form of a nasty, nasty vanilla-flavored milk cocktail. 26g in the powder, 8g in the milk. I love milk, but the powder is just intolerable. Unless, of course, you have two holes in your stomach. I’d practically drink tar to make them go away!
So that’s the update… Feeling better but still pretty much homebound due to my painful dehisced incision and immunosuppressed status. Plus my naps, twice/week labs, twice/week nurse visits, and weekly/bi-weekly Clinic appointments keep me pretty busy. 🙂 My doctors added a 2nd immunosuppression drug to my regimen this week, but I’m wrapping up an antifungal pill (which is disgusting and has to be sucked on 4 times a day) and only have 2 more months on an antiviral. Also by then, my body will have adjusted much better to the 2 immunosuppressions I’m on, my incision will be healed, and I’ll be out and about with more energy than ever. Hopefully! I’ve been to a few stores (and shopped online a lot!), I’ve been able to start going to church again, and my schedule for October is filling up with a few fun outings! Watch out in November – I’ll be better and driving and ready to go! By the holidays, I hope to be almost great, and if all goes well, back to school January 10!
So there’s your update. The cards and calls and emails and everything are all still coming, and I am so grateful for all of your continued prayers.
Love to everyone taking the time to read this and care about me 🙂