Off ECMO!

Tuesday 26th December - Boxing Day

We called the ward early to see how Grace was doing and the nurse told us that they had already started weaning her off the ECMO machine which was already on just 80%. We were shocked but obviously pleased that the doctors felt ready to do this. We didn't rush over as we are often not allowed to visit early because of nursing handover and ward rounds, etc., so we had a shower and ambled over to the ward. On our way over though, I got a phone call to say that the surgeons had been called, that Grace was already clamped off of the ECMO machine and was doing fine and that the planned to remove the canula from her neck at around lunchtime. Matt and I just stood on the street and couldn't speak for a minute. Obviously we want what is best for Grace but somehow it feels like this is all going quite fast now and we just didn't expect it. When we got the ward, Grace's lung volumes were well above 100 and her oxygen saturations were over 98% - unsupported by ECMO as she is now clamped off from the machine's circuit. Clearly the doctors are happy with this and are confident enough to remove the canula from her neck (which is tricky since, following the de-canulation that happened the day after Grace went onto ECMO, it is unlikely that they could ever put the pipes back once they take them out) but we are obviously very nervous. The surgeons arrived and we had to leave for them to get started at about 12.30pm.

We hadn't heard anything by about 3pm and so we called the ward. It seems like they were just too busy to call us but it all went fine and they said she was now stable and off the ECMO. When we got to the ward it looked really strange as there is no longer an ECMO machine at the end of Grace's bed and attached to her. Somehow she looks more like our Grace now, although we have both noticed that she has lost a lot of weight and muscle tone which will need to be got back with lots of physiotherapy. Grace is now being supported by a ventilator rather than the ECMO machine but we immediately noticed that her saturations are at 98% from just 58% concentrated oxygen. As compared to her condition prior to ECMO, this is just SO much better! Her lung volumes are also much greater and now constantly at around 120. The Consultant also told us that today's X-ray showed further improvement and that, depending upon whether they have a bed, we can probably return to the Evelina as early as tomorrow. The next hurdle will be weaning Grace off of all the many drugs she has had to be on. The doctors also gave Grace some adrenaline earlier today to support her blood pressure for a short while after she was off the ECMO machine although apparently this is temporary. The nurses also told us that the vessels in Grace's neck, rather than being repaired following the ECMO, have been closed in order to avoid any potential ruptures, etc. This seems strange as these are a main artery and vein connecting the heart to the head but, apparently, because of something called the Willis circle, the body can cope perfectly well without these vessels functioning. Obviously I don't care as long as Grace is going to be well but it concerns me that this will be a lasting effect of the ECMO treatment and I wonder whether it might affect her later in life. For the moment though, we just have to concentrate on her recovery and we are so thankful that we can now be confident that 'recovery' it what is happening - we just weren't sure we'd get here!