Paige was carded to experience her first Jiggy Wrigglers session at 11.00am at home today, but Sally kindly agreed that she would gladly come to the hospital at very short notice, I spoke to her at 10.30am and she was at QA with her bags of tricks and boom suitcase by 11.30am. Our session was worth it's weight in gold! Paige unfortunately had fallen asleep and I had to wake her but she absolutely enjoyed it. Joseph was also in the hospital that day and he was able to join us (hence the photo). I wasn't sure what to expect but what we got was beyond our expectations, there was lots of singing, dancing bobbing around and lots of musical toys, colorful fabric, puppets and even bubbles! Sam was jigging in about and boy does Sally have energy. We'll certainly be asking her to come and see us again. Thank you Sally!
Afterwards Paige ate her dinner and we spent the afternoon with Joseph as he received his blood. It's still pretty amazing to watch how Joseph and Paige respond to each other with the most beautiful smiles and hand holding. They are both absolutely amazing, brave and determined souls :-)
I was most disappointed that even though Paige's blood culture, line swab and stool sample came back negative that we could not be discharged. Reason being that her neutrophils are still naught and she still has diarrhea. Dr Walker explained that even though she is clinically well, it is simply not worth the risk to take her home when she has zero neutrophils and has been experiencing bouts of fever and diarrhea. We were however allowed to come home between antibiotic doses this afternoon at noon with a promise to return by 7.00pm.
Paige's face lit up when we arrived home she kept walking around and smiling. She even ate a decent lunch for the first time this week. Sam was also quite pleased to see us and greeted Paige with "I really missed you Paigey" he even volunteered to go up and accompany her when she woke up in the event that she was 'afraid'.
So we packed our bags and Russell and Paige headed off for the QA again last night. Closely followed by Sam and I because we forgot to pack her 'Taggy', her one comfort and I couldn't let her go without it. Being there did give us four a chance to spend to quiet, quality time together.
Dr Walker assured me that she was on call this weekend and if Paige has not had a temperature or diarrhea and there is any evidence that her neutrophils are recovering she may be discharged on Saturday. It's quite frustrating when Paige looks so well that she is stuck in the hospital but if it's one thing that we've learned with this whole experience is how deceivingly good Paige always looks despite her illness. So as good carers we will all err on the side of caution, simply because it is not worth the risk and follow the consultants advice explicitly. Dr Walker is an excellent consultant and I have learned so much from her in the past six months, she was the first consultant that we met when Paige was diagnosed on that faithful day, six months ago....and we have come to value and trust her knowledge and guidance.