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| Charlotte getting ready to go to her friend's dance concert on sunday night. |
Charlotte decided to go back to her old habits and ended up at PMH again this weekend. She had a bit of a snuffly nose on Wednesday and Thursday, but felt good apart from that. She was very tired by Thursday night and told me she had a headache, so I gave her a paracetamol and called PMH just to be safe. Charlotte slept until 7.30am on Friday, which is a good sleep in for her. Her headache had gone, but she was still tired. After finishing some christmas cards for her friends we decided to go to school. When they got there it was clear that she was not feeling particularly good. Then as we got in the car Charlotte told me her left ear was sore. Given that she appeared really tired too, I called PMH again and told them I would bring her in. It sounded like a virus of some sort so it was good to check it out.
We got to PMH about lunchtime and saw the doctors when we got the news that the canula would need to go in and we would be in the hospital overnight. They were a bit worried, as she was falling asleep constantly.
The canula was a big issue. The poor girl was so brave as each person tried to get the IV line into a vein - with no luck. They tried her hands, her arms.. and her feet. Finally, after attempts by 2 oncology doctors and 1 ICU doctor the aneasthetist managed to get one in to her foot on the second attempt. It was a mentally exhausting time as charlotte was so distressed.
The dramas seem to have been caused by the fact that her body was fighting the virus (her blood vessels in her hands and feet had shut down to keep the blood flowing through her organs) and of course those pesky steroids had ensured there was no chance of the veins remaining open.
Rachel was able to come in to the ward after her work to see us then.
So it turns out that being on high dose dex for a couple of months shut her own steroid production down completely. Unfortunately the docs gave her another shock dose of steroid again and we are now working to wean her off again (very quickly this time though).
She had only had one whole day without diabetes last week but with the addition of steroids we are back on the insulin for a few days. Charlotte was so upset, as she had been really looking forward to eating all her favourite things again.
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| Little Red Riding Hood - a good
little laugh :)
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We stayed in for the weekend, but I had tickets to go to Red Riding Hood on Saturday night, so asked if we could still go. The doctors gave us the OK and unhooked her from 'robot' (the IV machine) before we left.
We enjoyed the play - it was a very funny take on the traditional story. The small venue helped to keep everything very personal. We even picked up some chinese for a special treat! Unfortunately we had a high stress moment upon return to the hospital when the nurse couldn't flush the canula again. Fortunately the doctor advised not to try and insert another, but it caused a few minutes of high tension and sickness as I wondered why the hell nothing would go right and how on earth we were going to cope with more attempts to get the canula in.
We also saw the Make A Wish Foundation volunteers on Saturday afternoon. They talked to us about a holiday. It looks like we will all be able to go to Queensland and visit the theme parks, etc. The singapore plans go on permanent hold - and to be honest this experience has me very concerned about the rapid decline that can happen.. and how we would feel in a foreign country.
Anyway, we came back home on Sunday afternoon and Charlotte is now with mummy till Thursday.. Charlotte got to go and see her friend in a dance concert that night too (first pic above). She looked so pretty :)
Of course with no charlotte around for a few days, I just sit and hope that she's OK without the safety net of the hospital staff checking her every 2 hours! well, time to regroup and prepare for when I get to look after my princess on thursday... :)
