GOSH - ECMO

Wednesday 13th December

When I arrive to see Grace this morning, I see that one of the sisters from the Evelina, Fiona, is here helping care for Grace. I immediately burst into tears and am so pleased to see a friendly face. Things are no better today though. Grace's lungs have been suctioned this morning to try to remove some secretions but each time the nurses do this, her heart rate falls dramatically and they are starting to worry. Grace's saturation levels seem good, however, but she is quite cold and has a fairly constantly low heart rate (80 - 90 beats per minute - as opposed to anywhere from 100 - 140 which I think is more normal for her).

After their rounds, the Consultant tells us that he thinks Grace should be put on ECMO sooner rather than later, particularly because of her heart rate dipping, etc. He goes through the consent form with us and explains all the risks. Matt is very strong and decides that he should sign the form. At around 12.30pm, they start the process to put Grace on ECMO. We talk to other parents in the waiting area but then just decide to go out for a walk and get a drink. Fiona calls us at around 2pm to tell us that Grace is safely on ECMO - I almost collapse with relief whilst walking along Great Ormond Street. She says we can visit again in about 45 minutes to an hour. At 3pm we go back to see Grace and see the machine for the first time. It is very scary and she has two massive blood tubes going in and out of her neck on her right side (via what are called 'canula' in her neck). Her heart rate is still very low but her oxygen saturations are now right up at 98 - 100%. The nurse explains that the heart rate will be quite low as the machine (the Venus Arterial form of ECMO) is doing the job both of Grace's lungs and her heart really, hence her own heart has had some of its job taken away from it and will consequently be a bit confused and not have to work as hard. The nurses are obviously very busy and continue to make regular checks of everything - all of Grace's drugs (she is now on about 9 different ones) and the machine, etc.

Grace's neck is oozing blood from the canula site but we are told that this normal. On the whole, we are told that Grace is coping well with being on ECMO and that her lungs are being rested. We try tried to sleep and hope that things will improve now Grace is getting the treatment she needs on the ECMO machine.