Evelina (Day 4)

Monday 11th December

Grace had a fairly stable night again and her nurse was very thorough but very gentle and combed her hair, etc. Grace was placed back on her back at about 6am but remained OK. The Physiotherapists visited this morning and suctioned Grace's lungs for secretions. The doctors' general consensus, however, seemed to be that the secretions on her lungs were a secondary issue and that the main issue was just the oxygenation of her blood. By the middle of today, Grace was turned back prone and her oxygenation levels were around 85 from 85% concentrated oxygen. The doctors are obviously still concerned about these oxygenation levels and worried that damage could be being caused to Grace's lungs by the pressures at which the oxygen is being pushed into her. Obviously we are worried about this too and asking questions about whether she will be affected by this later in life but all we can really be concerned about now is if and when she will start to recover properly. After the afternoon ward round, the Consultant tells us that they are still seriously considering ECMO and have referred Grace to Great Ormond Street and are discussing with the Consultants there whether Grace should be moved there, ready for that treatment if it becomes necessary. We have been told about ECMO generally but we know that there are lots of risks involved and clearly we are very scared about it and hope that Grace will just start to recover on her own and with the help of the antibiotics that she is already on.

Grace's venus line in her right groin was obviously obstructing the blood flow from her right leg this afternoon and her leg is very puffy and pink. The doctors therefore move this line to her left groin area and raise her leg to help this recover. Grace was given some blood this afternoon but the main concern was that she kept trying to wake up and lift her head. This evening I helped the nurses with Grace's feeding (through a tube) and her eye and mouth care. Her oxygen saturations remain in the low 80s and I just keep hoping, praying and holding Grace's hand and trying to pass some of my energy to her.
The doctors then put Grace back on her back and she responded quite well, with saturations in the high 80s from 90% oxygen. Despite some suctioning of her lungs, Grace remained quite stable and her saturations recovered quite quickly after being off the ventilator for short periods. The doctors decided to leave Grace on her back for the night and raised her right leg to try to help the swelling come down. We are trying to sleep but are clearly still more worried than we have ever been. The whole of the rest of our lives seems to have fallen away somehow and I just keep thinking that I never appreciated Grace enough and how perfect and precious she is - I can't stop crying.