Finally 15 days later Paige has finally been discharged, I was beginning to think that she felt so safe and comfortable in the care of the Piam Brown Ward and that she didn't want to leave!
Firstly we can all breathe a huge sigh of relief as her flow cytometry results confirmed that Paige is still in remission so her slow recovery in terms of blood count is due to the many viruses that she has caught over the last couple of weeks. The weekend was absolute torture given that her initial results on Friday were inconclusive.
We were due to be discharged from Piam Brown on Monday and transferred to QA however Paige spent the day throwing up and there was no way she would be discharged. We were not sure about the source of her vomiting so the concentration of her feed was decreased, unfortunately she woke up at midnight hurling and had to be taken off the feed altogether. Last night she tolerated 12 hours of feed at a rate of 20mls/hr and by midday was still well.
Mary was quite pleased with her progress, especially since she is up to 10kgs and her cheeks are filling out nicely again. So given that Mary was now certain that Paige is still in remission, and that her bone marrow was regenerating albeit slowly, and that she was looking so well, Mary agreed that we could be sent home. Given also that both Russell and I have been independently signed off on the use of the feeding tube and pump, we will be trained at home tomorrow and did not have to be transferred to QA!!!!!
Paige had been caught in a vicious cycle of having loose stools combined with a restrictive diet and intensive chemotherapy over the last 3-4 months, so it's certainly not a surprise that she had deteriorated so fast so quickly. Fate however stepped in an took Paige back to the Regional center and her lead consultant Mary Morgan who continues to be our hero. Mary leaves no stone unturned and was adamant that Paige would not be discharged until she was back to her normal bright, happy self. I think that initially the Registrar assigned to us was a bit confused by the requirements of Paige's discharge (but I don't think that anyone really questions Mary's decisions). Mary authorized a battery of tests that included, blood, stool, mucous, line site, chest x ray, echo and ECG. She established a base line for Paige, which included levels of nutrients, then ruled out issues as she went along. She's also very clever and resourceful and co-opted the required skills of the people around her, namely a pediatric dietician, a gastroenterologist and dermatologists (to have a second opinion on the red spot/sores) She even did a bone marrow and flow cytometry to ensure that Paige has not relapsed, and most of all give us the necessary reassurances that we needed that was beyond any doubt.
Paige is looking well and smiling again, but of course it's week 4 again and she had her dose of chemotherapy Vincristine and demon Dex started yesterday for 5 days!
Anyway we are finally beginning to see a light at the end of the tunnel and hoping that Paige's tummy continues to heal and she can put on some weight.
Once again we are quite in awe of the amazing team on the Piam Brown ward that is led by Leigh Shaw, the people that looked after us were especially sensitive to the needs of both Paige and I, and went that extra mile to make sure that Paige was on a definite road to recovery. The particular people that stood out for me are Leigh, Karen, Liz, other Liz and Mandy - our deepest appreciation goes out to all of you for taking such good care of our precious Paige.
Good night to all