Starting the day at 6ish every day is certainly giving very loooong days!
Probably an odd thing to say but I was so pleased when Paige woke up this morning and Paige's nappy was bursting with wee and her pj bottoms were even wet. This was a major accomplishment for Paige who for the past two days has been waking up with a completely dry nappy. She of course was very cross with me because it meant that she couldn't wear her favorite pj's, so she had a full on tantrum, which I allowed even though I know it would wake up Sam. At that point I decided that we were going to have a good day!!!
Eventually Paige realsied that I was not going to budge by letting her wear the dirty pj bottoms and calmed down. Things improved after that or so I thought.
Before heading down to QA we needed to collect a wee pee sample from Paige. Poor thing just when she probably thought there's nothing else that they can do to me I stuck a bag to her bits!! The collection of the sample all went quite smoothly, much to my surprise. When we arrived at the hospital, Wilf was particularly pleased with my accomplishment. He had to administer her Cytarabine today because the only available community nurse was ill today. As it turns out it was quite good that we were there because Paige had an odd looking scratch/bruise on the little finger of her right hand that was a bit swollen and Louise didn't like at all. It's was a strange looking bruise that I noticed when changing her. In the end Dr Louise Millard decided that we should start anti-biotics immediately and that I could administer it at home but if there was any increased swelling or tracking I should bring her back immediately. I must admit that I didn't think much of the bruise but was so relieved that Louise noticed it and dealt with it. Also her instructions on what to look for and what to do was so crystal clear, that it certainly made me extremely vigilant.
Her blood results were no surprise, her hemoglobin continues to decline and she now has neutrophils of NAUGHT, which explains why Dr Millard had such a low threshold for the bruise, if it got infected Paige's body is incapable of making any puss to protect it. So far so good, she's asleep peacefully and the bruise seems to have calmed down. I'll administer another dose of anti-biotics tonight and then it will be once daily.
So the lesson for today is that someone is definitely looking over our beautiful daughter, we should not have had to go to the hospital today and neither did we need to see a doctor. However we ended up there and as luck would have it, it wasn't just any doctor but one that we trust very much and who has looked after our little girl very diligently for the past couple of weeks and knows Paige very well. We have met so many special people on our journey with Paige. Even tonight Laura our community nurse, who'd obviously had a long day and had also worked quite late dropped off Paige's anti-biotics at home, just to save me the trouble of having to go to the hospital and pick it up myself.
So tonight in our prayers we can say thank you for all the special people that have helped us and will continue to help us through this difficult journey and hope that they continue to touch the lives of other parents and children alike.