The Royal Surrey - Guildford

Wed 6th December - Friday 8th December

Upon arriving at the Royal Surrey and further to Grace's X-ray and tests, we were told that, in fact, Grace has a rather severe pneumonia and needs to be on oxygen for the night. Gracie hates wearing the oxygen mask and constantly tears it off. She keeps saying 'I'm so upset' and I am at my wits end trying to comfort and help her - I hate seeing her like this. Gracie was still tired but was drinking sips of water and, despite fighting me to keep her oxygen mask on all night, slept fairly well. Her oxygen saturations remained in the high 80s and 90s and the doctors seemed generally happy with this.

Today (Thursday 7th), Grace remained tired and didn't eat anything all morning but seemed to perk up in the afternoon and ate 2 jellybabies! Her oxygen saturations didn't improve much, however, and the doctors mentioned that she might, in a worst case scenario situation, need to be intubated and put on a ventilator. Nevertheless, Grace watched some of Monsters Inc. and seemed to brighten up. As she wasn't drinking, however, she was put on a fluid drip, including saline, glucose and potassium. Grace was also given an ultrasound to check for fluid on the outside of her lungs but the doctors said that the amount of fluid found was not necessarily dangerous and so it wasn't urgent to remove this right away. Despite still being on the oxygen and hating the mask, Grace slept slightly better and her Daddy and I took turns looking after her and getting some sleep in a room provided for us to use.

Today (Friday 8th), Grace is still very tired and unwell and her oxygen requirement has gone up somewhat during the course of the day. She also had a temperature at various times today which had to be controlled with Paracetemol (Calpol). This afternoon the doctors told us that her condition was at the very edge of their comfort zone and that they thought that she needed to be moved to another specialist hospital to drain the fluid on her lungs and manage her condition. I am trying to keep it together but am obviously terrified by this - we are already in a 'high dependency' ward and are obviously moving up to some form of 'intensive care'. After a few hours of very little information, we have been told that a bed has been found for Grace at the Evelina Children's Unit at St Thomas' hospital in London. We were then moved there by ambulance this evening by an Evelina retrieval team. Almost immediately upon arriving at Guildford, however, the team sedated Grace, intubated her and drained some fluid from around her lungs. We are SO, SO worried about her and can't believe that a little girl who was so healthy and full of energy 2 weeks ago can now be on a ventilator and so, so poorly.