Paige continues to sleep in her own bed, but didn't wake up very happy this morning:-(
After having 3 successive days of chemo, there are now visible signs of how weary she's becoming. She woke up at 6.15am and fell asleep again at 7.30 very unusual for her. When she woke up again she was covered in vomit and very distressed. Even Sam was confused and kept asking why she did a 'Domit". It mostly went downhill after that. Her bung was covered in vomit and I didn't have a clue what time the nurse was coming to our house. So I started phoning firstly the Starfish ward and the staff nurse who answered could neither help nor find someone who could. I then phoned the Children's Assessment Unit (CAU), no answer. Then Naomi no answer, but I did get a very helpful assistant. I then bleeped Wilf, no answer, then the consultant, no answer! By now there's a fair bit of steam coming out of my ears. So I tried the Community nursing team again and yes - NO ANSWER. All this time Paige is be becoming more and more miserable and less and less of her usual self. So I phoned CAU yet again and told then that I was bringing her in! I certainly did not want to have a repeat of a very poorly child on my hands and with the weekend coming on there would be a shortage of doctors on site.
I got to the door to leave my house and of course the nurse is about to ring the doorbell. So far we have had some pretty good experiences with the NHS but I have to admit this week has been especially trying with the community nursing team. Poor nurse Rachel, she apologized from the moment she got to my house until she left. I was so completely wound up by then that I had to try really hard to calm myself down.
Paige and I headed down to the hospital and 4 1/2hrs later we finally saw a consultant after Sister Lorraine intervened! The end result is that Paige's bloods are still the same but she could possibly now be constipated and that could make her be sick as well. I said this before and I will say it again.....how much more must this poor child endure.......So we came home and will return to QA for another review on Sunday.
By the end of today, I have decided that Paige is much stronger than her mother, her spirit never seems to be broken but I think that the last couple of weeks have seriously put a huge dent in mine.
Here's wishing for a quiet weekend and a more organized nursing team for next week, because it all happens again starting with a Lumbar Puncture on Tuesday followed by another 4 doses of cytarabine.