Evelina (Day 5)

Tuesday 12th December

Grace had another quite stable night. Her right leg remains very swollen but has recovered its normal colour which is good. Her saturation levels this morning were 85 -87 from 80% concentrated oxygen. Grace was also often quite awake, opening her eyes and responding to us but particularly coughing. The Physiotherapists saw Grace again and got up some more secretions from her chest. After their rounds, the Consultants told us that they didn't see any need for ECMO at the moment and were generally pleased with Grace's progress. Another doctor also did an echo-cardiogram on Grace's heart and said that everything is fine with that. They also do an ultrasound to check for fluid around Grace's lungs and say that the existing drain should be sufficient to get rid of this. Grace blood gas tests generally improved by lunchtime today and she was oxygenating to about 87% from 80% oxygen and with lower pressures than previously. The doctors are also trying to wean Grace off the morphine and have decided to do a bronchoscopy this afternoon to try to take samples from inside Grace's lungs for analysis and to see if they can identify the bacteria that has given Grace this pneumonia. The Bronchoscopy is fine and is done quickly but Grace's oxygen saturations take a while to recover from this and by 4.30 pm she is still only at 77/78 saturations from 85% oxygen. The Consultant then tells us that he is 'losing his nerve' and would prefer to transfer Grace to Great Ormond Street Hospital (GOSH) today. He thinks that this is really only an insurance policy as he doubts that she will need ECMO but obviously wants to be sure that there will be a bed available if she does need it and that she can be transferred when she is as stable as possible (the other UK centres where ECMO is available are Leicester, Newcastle and Glasgow and obvioulsy beds are limited). We are obviously even more scared at the prospect of this but are willing to do anything to ensure that Grace gets the appropriate treatment to help her recover asap - if that is ECMO then so be it. By 6.30 pm the Evelina team were preparing Grace for her transfer to GOSH - I went with Grace in the ambulance. As the portable ventilator could not cope with the high oxygen pressures that Grace now requires, she was 'bagged' for the entire journey (only 15 minutes or so by ambulance) by one of the doctors but her saturation levels remained in the 80s for this time. I seem to be in a sort of daze and can't really appreciate what is going on - I just hope that this is best for Grace.