Today was an up and down day.
Up because Bianca was discharged from hospital. Finally. Bianca had a play date with Georgia which was great, but unfortunately it's been a long time since she had a proper play date so she wasn't 100% herself.
Down, because today at approximately 15:00 we finally got confirmation that we are flying to Christchurch on Monday morning. Bianca will be admitted to Christchurch hospital and then on Tuesday she will get her treatment (including going into theatre for a lumbar puncture) and then the plan is that she will fly back on Wednesday. But just like they said "the plan is for somebody to be in Wellington to do the treatment", I am not yet confident that things will go according to "plan". They haven't yet booked return flights in case Bianca needs to stay longer. It will just be Bianca and myself. Terence is on a course and it being a relatively short stay, I did not think it would be worth disrupting Caitlyn's routine. Of course the benefit would be that I would be able to see what Christchurch hospital is all about (I understand it is a really nice hospital) and so this will be useful for making decisions going forward.
I am feeling pretty disappointed and upset that it came to this. They should have had a backup plan. We all assumed that since they are supposed to have this agreement with Christchurch that somebody would have come to see us for treatment and that that would have prevented families from having to disrupt their lives. So it leaves me wondering what it will be like next year when we initially only have one locum and I can't help wondering what will happen when this person needs to take leave for whatever reason.
Of course our situation is not nearly as bad or difficult as that of Elijah (read his story here). There is a video clip as well. And certainly our situation is nothing like that of Kyah and her family. We are not the only family affected and with luck our disruption might just be a one off.
So in a way it is probably fair to say that I really should stop complaining.
But then at first when we got the news about Bianca being sick, our whole world came crashing down, everything we knew, we planned for came to a complete stop. So after we finally managed to pick up the pieces we became familiar with our new life, we had to adjust the way we used to live. We had to learn a new routine and finally we got to the point where we knew what was coming to some extent. We understood Bianca's treatment plan and even though the road certainly had lots of twists and turns and lots of unexpected things, we had some control with the knowledge we gained. And that little bit of control became everything to us.
And then suddenly to be told that on Monday we won't be in Wellington for treatment, we will be in a strange place with people we never met, we have been given minimal information about what to expect and at this stage the only certainty we have about next week is the time of our flight to Christchurch and that somebody will be there to pick us up. So I feel a bit anxious not having much control over this situation. And of course it will be really hard not seeing Caitlyn during this time, and certainly if we were due to stay much longer, then I would have taken Sanna and Caitlyn along with me.
Medicines today:
Up because Bianca was discharged from hospital. Finally. Bianca had a play date with Georgia which was great, but unfortunately it's been a long time since she had a proper play date so she wasn't 100% herself.
Down, because today at approximately 15:00 we finally got confirmation that we are flying to Christchurch on Monday morning. Bianca will be admitted to Christchurch hospital and then on Tuesday she will get her treatment (including going into theatre for a lumbar puncture) and then the plan is that she will fly back on Wednesday. But just like they said "the plan is for somebody to be in Wellington to do the treatment", I am not yet confident that things will go according to "plan". They haven't yet booked return flights in case Bianca needs to stay longer. It will just be Bianca and myself. Terence is on a course and it being a relatively short stay, I did not think it would be worth disrupting Caitlyn's routine. Of course the benefit would be that I would be able to see what Christchurch hospital is all about (I understand it is a really nice hospital) and so this will be useful for making decisions going forward.
I am feeling pretty disappointed and upset that it came to this. They should have had a backup plan. We all assumed that since they are supposed to have this agreement with Christchurch that somebody would have come to see us for treatment and that that would have prevented families from having to disrupt their lives. So it leaves me wondering what it will be like next year when we initially only have one locum and I can't help wondering what will happen when this person needs to take leave for whatever reason.
Of course our situation is not nearly as bad or difficult as that of Elijah (read his story here). There is a video clip as well. And certainly our situation is nothing like that of Kyah and her family. We are not the only family affected and with luck our disruption might just be a one off.
So in a way it is probably fair to say that I really should stop complaining.
But then at first when we got the news about Bianca being sick, our whole world came crashing down, everything we knew, we planned for came to a complete stop. So after we finally managed to pick up the pieces we became familiar with our new life, we had to adjust the way we used to live. We had to learn a new routine and finally we got to the point where we knew what was coming to some extent. We understood Bianca's treatment plan and even though the road certainly had lots of twists and turns and lots of unexpected things, we had some control with the knowledge we gained. And that little bit of control became everything to us.
And then suddenly to be told that on Monday we won't be in Wellington for treatment, we will be in a strange place with people we never met, we have been given minimal information about what to expect and at this stage the only certainty we have about next week is the time of our flight to Christchurch and that somebody will be there to pick us up. So I feel a bit anxious not having much control over this situation. And of course it will be really hard not seeing Caitlyn during this time, and certainly if we were due to stay much longer, then I would have taken Sanna and Caitlyn along with me.
Tomorrow is the CCF Christmas party and I fully intend to enjoy it as much as possible!
Medicines today:
- Omeprazole - 1 capsule a day
- Fluconozole - 10 ml at night
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1 comment:
Gosh, makes me so thankful for the wonderful hospital we live near. We drive an hour and a half once a week but we are so blessed that it is FULLY staffed. Our hospital is a big part in a cancer study group. Study not meaning they are making our kids guinea pigs but that we get the top notch care. I had to wait one week for treatment because results were not in and I thought I was going to go crazy waiting for answers. I am NOT good with change. Going somewhere new would throw me so out of wack. Prayers for you. Hopefully you can get back to normal soon.
I am glad she gets to spend the weekend at home though.
Tristan is sick but doing better today. We have been monitoring his temperature like a hawk so it does not get too high. I do not want to spend time in the hospital any time soon. (((HUGS)))
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