Evelina (Day 2)

Saturday 9th December

Grace hasn't improved overnight. The doctors are worried about her oxygen saturations levels and have suggested that she be moved on to a different type of ventilator called as oscillator. As opposed to conventional ventilation (where a machine essentially breathes for you and pushes oxygen in and out of your lungs), this type of ventilation pumps lots of oxygen into the lungs to constantly inflate them and sort of vibrates / shakes out the carbon dioxide. Apparently this is often used on babies and can be more effective than conventional ventilation. The nurse working with the doctors on Grace early this morning told me that she 'didn't know what would happen today' and that I should get my husband here with me asap. Clearly I became terrified and summoned Matt immediately, who arrived within an hour, having driven at dangerous speeds on his motorbike! I don't think that I have every been more scared, I keep having sort of panic attacks where I can't breathe and I just want to wake up from this nightmare! Needless to say that I cry a great deal and can't really be consoled but I also want to try to be strong for Grace.

Over the course of today, however, Grace was placed prone and her condition stabilised on the oscillator. The doctors managed to get her oxygen saturations up to the high 80s and 90s from 70% oxygen and seemed pleased with her progress. The Consultant spoke to us after the doctors' rounds, however, and told us that, if Grace's condition didn't improve, the only further treatment that could be offered is something called ECMO that they only do in 4 centres around the UK, one being Great Ormond Street (see www.gosh.nhs.uk/factsheets/families/F030174/index.html) . This treatment basically involves oxygenating the blood outside the body and is somewhat dangerous - hence the team will do all they can to avoid Grace needing this treatment.
Later in the evening, the team turned Grace back to supine but she clearly didn't like this as her saturations dipped and her blood gas index rose. By 8.30pm they had turned Grace back onto her front and she then remained stable, the nurses then being able to reduce the oxygen to 50 - 60%. The nurses also began feeding Grace very small amounts of enriched milk through her feeding tube directly into her stomach. We were given a (double en suite) room on the 1st floor of the Evelina Unit and told that we could stay there until Grace left the ICU. Obviously we are still beside ourselves but are pleased that we can both be close by. Matt has decided that he can't possibly start his course on Monday and will stay with me and Grace at the hospital for the forseeable future.