I guess it would be fair to say that it is impossible to have any energy left over at the end of a day, or in this instance 5 days of the Demon dex!!!
Paige was discharged on Tuesday last week and came home by early evening. Sam was thrilled that his sister was home and she seemed quite pleased to be at home too :-) She continued to have both oral and IV anti-biotics that would be administered by me on Tuesday and Wednesday.
On Wednesday I spent the entire day either holding Paige or offering her something to eat or drink, by the end of the day we were both frazzled. She was so out of sorts that a visit from her buddy Jobo didn't even cheer her up, in fact she didn't even go near him! Sam on the other hand had been an absolute star trying to be quiet when she was asleep or entertain her when she was crying. He of course had to spend the day at home due the 48 hour rule after being sick. His good behavior earned him another Fireman Sam fire station, that he was thrilled to bits about!
By Thursday I was weary but still managing. I had back up because Russell stayed at home to help with Paige and Sam. She woke up in a good mood but unfortunately it didn't last very long :-( She's still only eating bits during the day and whilst her poo isn't as messy as it used to be it's still loose and frequent and she demands to be changed within seconds of it touching her skin.
Friday, finally the last day was here! by 9.00am Paige had alreday tried 5 options for breakfast, had 4 options for a drink and bloods were done by the community nurse. Her mood had worsened considerably and I had resigned myself to holding her for the entire day. By this time she had managed to swallow the skin off the thumb that she sucks on and it was pretty swollen. Of course this would require a trip to QA for anti-biotics at the very least. Her blood results were in by 11.30am and Louise called with the good news that her hemoglobin was coming up but she would still like to see Paige's thumb. We left QA after an uneventful but very pleasant trip armed with oral anti-biotics.
Saturday was much of the same behavior, eating, drinking being grumpy and many poos!
By Sunday we celebrated Mother Day and Paige's improved mood. She's still only eating bits and pieces but has manged to put on some weight and is walking around the house quite happily. She wore her Nemo costume for the entire day and even enjoyed a brief stint in the sun!
Hopefully her neutrophils will continue to improve and increase this week and she can begin her oral chemo. We're off to QA again tomorrow for clinic. She's still coughing quite a bit despite a specific respiratory anti-biotic which is a bit worrying......but she has alreday had several chest X rays and the oncology consultants now know her very well and are quite thorough with her so that usually puts my mind at ease despite her hacking cough