I intended to update this blog frequently, but life took over and I found myself needing to fall into bed as soon as I got home in the evenings.
Here we are now, three weeks post-op today, and while so much has changed, some things still stay the same. I'll try and give a bit of a run down of what has happened since I last posted. This will by no means be comprehensive, because it would take hours to read!
Day four post-op (Friday)
Lauriel was still in ICU - and began to develop a low-grade fever. They took blood cultures, and cultures from the various incision sites, but nothing came back, they also did a lung x-ray, which ruled out an infection in the lungs. They started her on broad spectrum antibiotics, because they were sure there was an infection SOMEWHERE. I remember crying a lot before I left because I was so worried I was going to get a call midway through the night saying she'd died. Insert eye-roll here.
Day five post-op (Saturday)
Unexpectedly, Lauriel was informed early in the morning she was being moved to the surgical ward! Yay! This represented a huge milestone in her healing and recovery, and I think it was when this happened I finally realised she was going to be okay. I think they did more tests and cultures, but again nothing showed. Her fever spiked again in the evening, as it had on Friday.
Day six post-op (Sunday)
Main thing that happened was Lauriel having output for the first time! Output is what they call it when you poo in your bag. Sounds classier than poo, doesn't it? Fever spiked in the evening again.
One week post-op (Monday)
We got the bestest news on this day. The pathology results came back and none of the 19 nodes they tested had cancer cells. Lauriel was officially declared cancer free. On this day, the ostomy nurse came to see Lauriel and we saw our first bag change.
Day eight post-op (Tuesday)
This day was pretty momentous, because it was the day I helped Lauriel change her bag for the first time! I think it was on this day she also had some imaging done, as they still couldn't figure out where the infection was. They decided it was at the bottom of her incision, and later in the afternoon one of the surgeons did an aspiration and drained 100ml of fluid from the site. They also found a small pool of fluid (on the CT) just beside her tailbone. Pretty sure that on this night her temperature behaved!
Day nine post-op (Wednesday)
We did four bag changes all by ourselves! The doctor did another aspiration and got more stuff out. Temperature behaved itself again.
Day ten post-op (Thursday)
They decided they would put a drain in Lauriel's butt to get rid of the pocket of fluid beside her tailbone. This was done in radiology, during a procedure known as CT guided sacral drain placement. Basically, she had an almost full theatre team with her in the CT room, and they used the CT to position a drain in the best place to drain all the fluid. This was a bit of a nasty experience for Lauriel, because afterward, when she needed strong pain relief, they realised her notes were still on the ward, and she spent 20 minutes in recovery, crying in pain, before her notes were located, and a doctor was found to chart the necessary meds. It was also a bit freak-out inducing for me, because they said it would take 30-45 minutes, so two hours later when she still wasn't back I was pretty terrified. It was made worse when a nurse, who was on the phone, rushed in, picked up her notes and said "what do you want me to do"... I was like OMFG SHE'S DYING! Insert eye roll. But no, as our lovely friend Gordana suggested, they probably needed the notes to chart meds. When Lauriel saw the time in recovery, she asked a nurse to ring me because I'd be freaking out. She knows me so well.
Day eleven post-op (Friday)
Lauriel was given day leave! Instead of leaving the hospital grounds, we simply went outside and Lauriel got some much needed fresh air!
Day twelve post-op (Saturday)
Lauriel left the hospital grounds for two hours! We had a quick trip home, then went to Gordana's to paint for a while.
Day thirteen post-op (Sunday)
Lauriel left the hospital grounds again! Some time at home, a quick hello to Gordana, and then to visit Preeti and Mohit and their daughters, for a lovely cuppa and some delish Indian food.
Two weeks post-op (Monday)
Day leave again. Shhhh, don't tell anyone, but we actually left the city! Don't worry, nothing too fun, just dropping teenagers off half-an-hour away!
Fifteen days post-op (Tuesday)
We hoped she'd be home. She wasn't. Big sigh. Infection seemed well managed by antibiotics, the butt drain, although painful, was doing it's thing too... but they wanted to give one more day.
Sixteen days post-op (Wednesday)
Because of some redness and swelling half way down her abdo incision, the surgeon decided to reopen a tiny part of the incision to drain the fluid underneath. She did this. I watched. It was SO COOL. She packed the hole with some special fabric stuff, called a wick, which draws out the gross fluid. THEN SHE SAID LAURIEL COULD GO HOME! A referral was made to the district nurse, to come and change her dressings daily, a prescription was written up, discharge papers were given, and we were free to go. It didn't happen as quickly as that, but eventually we said goodbye to the hospital! Our first night went well, Lauriel had some minor colostomy bag leakage, but we got that sorted out and went back to sleep. It was so nice having my wifey home and in my bed.
Seventeen days post-op (Thursday)
Our tenth wedding anniversary! Not spent the way either of us imagined it would be - with visits from the ostomy nurse and the district nurse, and lunch from the salad bowl place at the mall - eaten at home.
Eighteen days post-op (Friday)
We went out for a little bit in the morning to go to our knitting/crafting group at Article. It was a lovely outing, and we left after about two hours. District nurse came. Everything was well.
Nineteen days post-op (Saturday)
HAHAHAHAHA remember how everything was well? Well, then it wasn't! Nothing TOO serious, but where the surgeon had been aspirating fluid, it had suddenly become red and painful, so the district nurse advised us to go up to ED. We did and were seen quickly. But that was where 'quick' ended. Lauriel was put in the AAU (Acute Assessment Unit) and was told she'd go up to the surgical ward 'soon'.
Twenty days post-op (Sunday)
The surgeon came by and decided that, like they'd done on Wednesday, they were going to make a little incision on the abdo incision, to drain all the fluid. Procedure performed, wick packed in. She'd be sent to surgical soon. And then we waited.
And waited.
And waited.
And waited.
Three weeks post-op (Monday, today)
And waited.
And waited.
And waited.
And waited.
Around 5pm, when her wick still hadn't been changed - since 11am-ish the previous morning (even though the doctor said it needed to be changed when it was saturated - which happened by 8.30pm the previous evening), and after being told about five times she'd be taken to surgical 'soon', and feeling as if we weren't being listened to whenever we told a nurse THE WICK NEEDS TO BE CHANGED, progress. Why? Because I mentioned magical little words. Code of Rights. My actual words (to the poor HCA who answered the bell when we pushed it) were "I know the Code of Rights and I'm not afraid to use them" (cringe....), but miraculously but a few minutes later A BED BECAME AVAILABLE ON THE SURGICAL WARD! OH EM GEEEEEEEEEEEE. And finally. Finally, finally, FINALLY, at 5.45pm, Lauriel landed on the surgical ward. And three hours later her wick was FINALLY changed. And OMG, who knew so much gross fluid would come out, especially considering the wick was only saturated for about 24 hours. ERMAHGERRRRRRD.
Yes, I know. Breathe, Emma.
And there you have it, fine folk. The past eighteen days of our lives.
We don't know how long Lauriel will be in hospital this time. They are giving IV antibiotics and I am imagining they'll want to make sure the infection is well and truly gone before they let her out this time. Hopefully the drain in her butt will come out on Thursday - that is when it is scheduled for anyway. Lauriel has said that bloody drain has been the worst part of this whole experience, which I think has come as a big surprise for both of us.
It's funny, really... the one thing we were most worried about prior to surgery, was the stoma and the colostomy bags, but that has been the easiest part of the whole journey. Nice and straight forward. It is amazing really, how quickly we've adjusted to the bag - we've gotten into a nice routine when Lauriel needs to change it - and to be honest, it has been a kind of bonding experience - intimate, in a way. I know that sounds weird...
So yeah, three weeks today since surgery! So much has changed, but lol some things stay the same - namely Lauriel being in the hospital. It has been an odd time, challenging, but also really rewarding, and I think over these three weeks I've grown as a person, and especially as a wife. I'm a lot more relaxed about hospital this time (well, minus being pissed off today!), and I know it's the best place for Lauriel to be. I'm still looking forward to the day that this infection business is all in the past though, and as much as the hospital staff are all lovely, it'll be nice to say goodbye, for good!
Thanks for all your love and support
Emma