11 December 2012

Onwards and Upwards!

Paige's central line was removed at the Queen Alexandra's hospital last week Monday. The procedure went well and Paige was up and eating soon afterwards. Poor heart was starving and ate a whole bowl of rice! We arrived at 7.00am, she had her chemo via her central line for it's last use, at about 9.00am then waited till her turn in the theatre, which was at 12.30pm, that's why she was so hungry! We were discharged shortly afterwards.

It was also her week of the "Demon Dex", but this time she just ate all day long, she was a bit grumpy but not as bad as previous bouts. At least these were the reports from Russell, as Sam and I headed off to Trinidad on Wednesday morning and returned to England on Sunday morning! It was a fleeting but fabulous trip. Neither Sam nor I wanted to return home to the cold.

When we arrived on Sunday we were greeted with a perky, healthy looking little girl, who has gained approximately 1kg in one week! She actually felt heavy :-). We headed off to the Piam Brown Christmas Party and the kids had a fabulous time. Paige complained when Santa arrived because it meant that they had to turn off the music, she loves dancing. Here she is opening her present with the help of Big brother Samuel.

Her hair also seems to have grown another inch!

She is just such a happy child

Bloods were done by finger prick yesterday and she was not pleased at all! On the bright side however, she has neutrophils of 4.4!, we know that is is inflated due to the steroids but it was incredible news. She resumed oral chemotherapy last night. Next Step is her Lumbar Puncture next week Tuesday.

In the meanwhile we are getting ready for Christmas as well as Uncle Kevin and his new bride Renee, who arrive on Sunday and will be spending the next couple of weeks with us.


1 December 2012

Central Line is going!

When I spoke to Dr Lousie Millard on Monday morning about Paige's line she suggested that we see her sooner rather than later at CAU. One look at her line and she advised that another swab was needed and Paige would have to spend the night! We were prepared for that and Paige was in particularly good spirits so we did. She ran all over the hospital for about 3 hours and Dr Millard realised how much energy she had when she was well! She was discharged on Tuesday and anti-biotics continued at home. By Wednesday the line swab was still positive with the same bacteria  Staphylococcus aureus. So we took her again today for yet another swab with the understanding that if the swab was still positive for the bacteria, 'serious talks' would commence for removing the line.
Of course one look at the line site today and Dr Millard quickly conferred with Dr Mary Morgan and the decision was made to remove the line on Monday morning.

When her line is removed, it may not be replaced. She will have cannulas inserted for the her chemotherapy and finger pricks will be done for blood tests. For us we are now between a rock and a very hard place. Having a central line means easy access to blood, giving IV anti-biotics and doing blood tests. Not having a central line means painful cannulas every 4 weeks and finger pricks as often as every week, BUT lesser chance of recurring infections, and freedom to have a bath and go swimming and so many other things.

So we are schedule to be on the Shipwrecked ward at 7.00am on Monday morning at the Queen Alexandra Hospital, firstly to have her monthly Chemo followed by the Central Line removal under a general anesthetic, and hopefully be home for dinner.

For now, we have plans for Paulton's Park winter wonderland tomorrow, and quite looking forward to it.

Night, Night