I’ve been away for a week, at the start of what was supposed to be a seven week stint of work. Two trips and a few days in between, when I was going to fly to Canberra to stay with my brother and his newly immigrated family.
The first trip was one I’d been looking forward to for a while: down the Tanami Track, which I’d never done before. It was quite a hard trip, owing to unrealistic expectations set up by the office and also because of the presence of two middle aged special needs guys, travelling without a carer. But the country was new to me and it was wonderful sleeping out under the stars again and was enjoying it.
I’d been in touch with my daughter in Canada and was aware of her health situation (she suffers from the same auto immune disease that I do and was experiencing the pain of a first flare up). I could only console from a distance and feel bad that I was the genetic cause. She had taken a lot of time off work and was under a specialist, just awaiting the results of a blood test before she could move onto the very expensive biological drugs; they tried steroids for months and it didn’t help much.
Then her boyfriend cut his hand very badly and the local hospital (great for ski injuries) sent him to a specialist place 2 and a half hours drive away. My girl drove them both down, he was treated, they drove back again and her doctor called, said she was to come in immediately.
Her iron levels were so low that she could have passed out anytime and was a couple of days away from autonomic body function failure. They immediately put her in an ambulance and rushed her back down to the city they’d just been in, admitted her to hospital and started transfusing. All in all, she ended up having five blood transfusions.
They started to do tests, checking for why the iron loss and obviously internal bleeding somewhere was the cause. Endoscopy and a colonoscopy later and they thought it was ulcerative colitis at the fulmitive disease level (most severe). She was put on massive doses of IV steroids in a bid to halt the inflammation but it was a juggling act between giving the steroids enough chance to work but also wanting to do surgery before her colon perforated and she went into septic shock.
There was a very real chance she would die.
I found this out when I came back into phone range and it was devastating. I arranged that I could leave the tour (so unprofessional but the next leg was four days out of phone signal and I just couldn’t cope with that) and was poised to fly to Canada if she got worse or they did surgery anyway.
Funny, at first I was so upset at the thought of my beautiful twenty five year old daughter having to cope with a colostomy. Then I was just so grateful that that was even an option, if it saved her life.
The inflammatory markers kept going up, even with treatment. It looked really bad. Then finally they started to descend and the doctors were cautiously optimistic, although still keeping a surgical team on standby.
And now they started her on the biologic drugs and she is responding amazingly well, so much so that they are talking of discharging her in a couple of days.
I feel a bit shell shocked, to be honest. So glad but there was so much adrenaline in my system that the letdown makes me feel disgusting. Probably won’t fly out now if she continues to improve.
But, oh dear, I thought I would lose her and that took me back to the past.