I guess Paige didn't like my dairy free pancakes yesterday, made with almond milk and lots of love :-( or the soya free, dairy free cheese that we made a special trip to the health store to get! Yesterday was the first day that Paige didn't have a temp over 38C. She woke up a bit miserable after her afternoon nap at 4.45ish and cried till after her bath, but afterwards she was happy and playing and laughing with me at bedtime, so much so that Russell gave up watching TV and came upstairs to join the fun.
We all went to bed and Paige was put in her own room for the first time this month, she woke up sometime during the night and came in our bed. Soon afterwards I could hear and smell her poo. Poor heart I changed her and I could feel how hot she was. She had a temp of 38.2C. I called the CAU (Children's Assessment Unit) and as agreed we tried to bring her temp down manually and checked her temp again in an hour, by then it had risen to 38.6C. I just changed and headed down to the hospital. When we got there she had risen to 39.2C and was completely miserable. Plus she did another poo.
The doctors on call weren't quite sure what to do given that she was already on anti-biotics and her CRP was previously below 5. Finally at 5.00am the doctor came in somewhat embarrassed and let me know that Dr Millard had left note on how to treat Paige if she spiked again, unfortunately they hadn't checked her file but rather kept calling the Piam Brown ward for advice. duh!
So another dose of intravenous anti-biotics were given and blood cultures, blood test and a line swab was done. We settled down finally at about 5.45am and then came the smell and sound of another poo at 7.00am. Paige's tummy is almost right back where we started and her temp had only come down to 38.4C. Her neutrophils however have come up to a whopping 0.6 which I was really pleased and comforted by. Strange how her blood results are now the bane of our existence and we were both finally able get some sleep.
She woke up at 10.00am completely parched but still had a temp. We were finally moved to the ward at 3.00pm and saw Dr Millard. Apparently there's a virus about that's causing very high temperatures, the person in the room next to us is also an ALL patient and he has had some alarming temperatures too.
So another day spent at the QA but on the bright side Paige was very happy to see Sam this afternoon and we all had dinner as a family in our room. Her fever has broken and she thoroughly enjoyed her bath with Sam. When our nurse Susie came in and saw the kids in their pjs watching a DVD she asked Sam if he was here for a sleepover. I told her they had just had a bath she commented 'nice it's like being at a hotel'. It then occurred to me that in an effort to keep our family together and as normal as possible Sam quite often has a bath and brushes his teeth at the hospital. He must think that it's quite normal to do that! Also Paige seems happy when we're at the hospital because so many people come over and speak to her and play with her.
Funny where our lives are at now, being at the hospital is like a second home, I think that it also says a whole lot about the team that takes care of us, they are doing a fantastic job of making us feel welcome and comfortable.
Paige will be at the hospital for the mandatory 48 hours until her blood cultures are back, we're hoping that if her temp stays down she'll be allowed home tomorrow between anti biotics but as Louise said to me before I left the hospital tonight "that's a negotiation for tomorrow Lisa". So Russell is on night duty at the hospital yet again and I am at home with Sam.