So off we go with the Tole family on our eagerly awaited adventure North again. We make it to Coober Pedy, our first rest stop of the trip, where we set up camp and really start to get into holiday mode. I’m not telling you what we did here because you shoiuld have read https://toeskneez.wordpress.com/2012/06/30/the-next-northern-adventure-part-4, so we’ll skip to the bit that’s important. Kirsten gets sick. Not just a cold, but wakes up with an immediate need to vomit, and vomit she does for 2 days straight! We get her into Coober Pedy hospital, which in itself is a little confronting, but they start to try and get her right. After 3 days and with the help of the wonderful Dr. Michelle Tan, we’re allowed to leave, but on the proviso that we at least look into flying Kirsten home if she doesn’t get any better than she is. This is the ‘Technical Hitch’ I referred to in https://toeskneez.wordpress.com/2012/06/30/the-next-northern-adventure-part-4. It is also what I referred to when I said Kirsten collected something else. This year, it seems, she’s collecting hospital wrist bands. Not a great hobby really is it?!
So we get to Alice Springs and Kirsten is doing really well and starting to feel a whole lot better, and you all know what happens in Alice Springs, because you’ve read https://toeskneez.wordpress.com/2012/07/03/the-next-northern-adventure-part-5/ , so I don’t need to get into it.
We have joined up with the Robertsons at Erldunda and now we are heading to Uluru, my most favorite place, but I don’t need to go into details, because you’ve all read https://toeskneez.wordpress.com/2012/07/14/the-next-northern-adventure-part-7-part-1/ & https://toeskneez.wordpress.com/2012/07/15/the-next-northern-adventure-part-7-part-2/ . Needless to say, the real adventure is about to begin! We decide to continue to Uluru because Kirsten IS starting to get better and it has a big airport, where if we feel she needs to, we can fly her home from. This is our plan.
Except it is to change. And change dramatically!
On the day we are due to leave Uluru, Kirsten once again gets sick, but this time there is what’s called a ‘Thunderclap’ headache, which is instant and intense pain as well as the vomiting. She is extremely ill, and finally it is decided that she will be airlifted via the Royal Flying Doctor Service to Alice Springs, where hopefully they can stabilize her enough to get her home. Now I sincerely hope none of you experience this, but it is one thing to put a loved one into an ambulance locally, when you have to put them into an RFDS flight to somewhere you know there is going to be no one for them for hours is extremely traumatic. We do though, and we say our goodbyes and reassure Kirsten we will see her soon.
Now our kids have had a big year and they have handled themselves so amazingly well, they never cease to amaze me. To know their Mum is being flown out of Yulara in an emergency must have been frightening. I know how I felt, it must have been 10 fold for them, but to their credit they handle themselves in the mature fashion they have grown into, and are calm and cool about it and we pack up our stuff and start the chase to Alice Springs.
We head off with the others with a plan of having lunch with them at Curtin Springs station, which happens to have the most awesome steak sandwiches, and then leaving them at the turnoff to Kings Canyon, which is what happens and we say teary goodbyes to them, not knowing what exactly lies ahead of us.
We arrive at Erldunda, with dramas of course because nothing is ever easy for us, but I’ll share that in another blog. We fuel up and then head to Alice Springs to see Kirsten. We are informed that Alice Springs cannot handle her and she is to be flown once again via RFDS to Adelaide in the morning. We spend an anxious night in a caravan park in Alice, say our goodbyes to Kirsten and watch her fly out of Alice knowing we won’t see her for at least 2 days!
Now I don’t want you to think this is all doom and gloom (well I guess it kind of is for Kirsten!) No, because with having Kirsten go into hospital in Coober Pedy made the trip that little bit more exciting for the kids and I. We did some more things than we had planned initially and had a couple of adventures when we left Uluru, but as I’ve already mentioned before, I’ll put all that in another blog. This one’s more about explaining Kirsten’s year.
So now we are heading south towards Adelaide with the plan of making it by Saturday night. It is now Friday, and the plan is to stop in Coober Pedy for the night and then get to Adelaide. Kirsten’s mum and dad are driving over from Victoria to meet her when she arrives via the RFDS so at least she won’t be alone. The kids and I arrive on the Saturday night and set up camp in a caravan park a short stroll from the hospital.
There is another MRI performed and the excellent Dr Michelle Kiley tells Kirsten that she thinks it’s definitely Multiple Sclerosis (MS) and that instead of starting treatment in Adelaide, they will try and get her home where we can get back onto Kirsten’s Drs. in Melbourne. Except this is a bit of a problem. She wants Kirsten admitted back into hospital and there are no beds in Melbourne! Kirsten has been in Adelaide one week, I have already flown the kids home, and Kirsten’s mum and dad have kindly driven their car and mine and the caravan back to Melbourne in preparation for us to be home for the weekend!
A rather heated debate ensues, whereby we manage to convince Michelle that we can get home commercially, then get back onto our Drs. first thing Monday morning so Kirsten can continue forward. This is agreed to, and we set about organizing to get home. Flights are organized rather quickly and within hours we are on a QANTAS flight home. Kirstens sister picks us up at Tullamarine and home we head, tired, but glad to be back home where we can move forward and get some answers.
Monday morning and I’m straight on the phone to try and get in to see Kirsten’s Drs. He tells us to head to the emergency department (ED) at Footscray and come in through there which is what we do. To cut a long story short, he is happy for Kirsten to come home and continue as she has been with rehab and to come and see him later in the week. Unfortunately things are, once again, unbeknowns to us, about to change dramatically again!
Early Thursday morning, Kirsten once again has a massive instant Thunderclap headache. This time before it hits, (she recognized the symptoms beforehand), I am on the phone and have an ambulance on the way. Once again she is extremely ill and they bring her into the ED at Footscray, where we await the neuro team to come and assess her. As we are waiting, Kirsten’s mental and conscious state changes and all of a sudden she has a massive seizure! This is now very scary and the Drs. are very concerned and trying to get Kirsten sorted, when she has another seizure. They decide it is safer for Kirsten to be sedated and put into intensive care for the time being so that they can monitor her and make her safe until they decide what to do.
Another MRI is done and it is now found to show some more lesions in her brain, but she has also developed some heart problems. The Drs. do not think it is MS anymore and we have to wait for an angiogram to find out what is wrong with her heart. Are these things all related? We are yet to find out!
So, as I speak, and as of the publishing of this blog, Kirsten is still waiting for an angiogram. She has, it has been discovered, three fractured vertebrae in her back, which it is thought may have happened when she had the seizures which is causing her enormous pain. Once the angiogram has been done and they have some answers for her heart, it has been put on the table to have a biopsy done on one of the lesions in her brain to find out, hopefully definitively, what they are.
As I eluded to earlier, Kirsten has had a big year! She also has an impressive collection of hospital wrist bands. The year is by no means over yet, and I will try and keep the blog as up to date on her conditions as I can. I know you are all thinking of us, and particularly Kirsten. Your thoughts and kindness is overwhelming and we are hoping for a positive outcome. As they say, one day at a time!
Thanks for bearing with me on this blog. It’s been a big one! I will update it as we find out more so you can all know how Kirsten is. It is very humbling to know that we have so many wonderful and caring friends and family. It certainly is appreciated.