ECMO - the treatment

Friday 15th December - Thursday 21st December (Daddy's Birthday was on 18th)

This seems to have been the longest week of my life and probably Matt's too. I am constantly exhausted and have developed a twitch under my right eye which I can't get rid of - but I don't care. Grace is still on ECMO and we still don't know whether and when she will recover. I am starting to despair if I am honest but I work hard every day on staying positive, not crying and believing that Grace will recover back to her usual self before too much longer. We have developed a sort of habit of sleep (although I wake and call the ward regularly during the night) and daytime routine of visiting Grace and doing other things like washing at the launderette, calling family and friends and writing this blog. I think this just helps us to get through each day but we have also started visiting the hospital chapel quite regularly and praying for Grace.

Things seem to have gone up and down rather a lot this week. Grace has generally remained stable on the ECMO machine but there have been lots of other tests and lots of ups and downs in her day to day condition. We have, perhaps understandably, been quite nervous about visiting Grace and touching her - and particularly the nurses moving her - after what happened on Thursday evening. Grace is on a great deal of drugs - these are the ones that I can remember - Morphine, Clonadine (both for pain relief and sedation I think), Medazolam (for sedation and amnesia), Heparin (to thin her blood for the ECMO to work), Vecuronium (a muscle relaxant), Frusemide (a dioretic to stop her from retaining fluid and being 'puffy' which is common for ECMO patients) and Calpol. She is also occasionally given blood transfusions (although the ECMO machine was pre-loaded with lots of blood of Grace's type so that her body never has less than it needs) and clotting products such as blood plasma or synthetic clotting products. This is quite balancing act with the Heparin to thin the blood and we have been told that after a while the ECMO machine circuit (i.e. all the wires which carry the blood) may need replacing as they may become clogged with clots, etc. Grace is also being fed via a tube which goes straight into her stomach and is given some oral medications, such as Calpol and some sedatives, this way. The food she is being given is a sort of think, nutrient enriched milk. Early in the week the nurses were concerned that Grace's tummy wasn't really absorbing much of this food but by the end of the week her tummy is working fine and she is absorbing food and doing poos. Towards the end of this week, the doctors had to remove one of the arterial lines from Grace's groin as this wouldn't stop oozing blood (blood loss is common with children on ECMO as the blood is thinned) but this line was quite easily relocated to under Grace's left arm and the bleeding stopped. The femeral line, which is delivering most of Grace's drugs, is still in her groin on her left side.

Grace has had various visitors this week, principally her Granny, Grandma and Petergramps, Grandad Ray, Godparents Stu and Wendy, Auntie Mandy, Auntie Mari and Uncle Eddie. Everyone finds it difficult to see Grace with so many wires and tubes and looking so asleep but Matt and I must be used to it by now. We have carried on reading stories to Grace and she has listened to music some days. She has awoken a little on some days but the nurses generally stop the muscle relaxant / sedative drugs, let her wake a bit, see her move and wriggle a bit and then put her back on the drugs to keep her asleep. She can hear us I think and responds a bit (depending on the level of sedation she is under) when we read to her (her blood pressure goes up) but we are told that she won't remember any of this and it is probably just like being rather drunk and out of it.

On the 17th December, the nurse on the afternoon shift said some really encouraging things about Grace's progress and we started to get excited for Grace's recovery and, at least, that she would recover. However, on the 18th (Matt's Birthday) we had a meeting with the Consultant who told us that nothing had changed. We were devastated although perhaps we shouldn't have been as we shouldn't have taken the nurses words so literally. However, the Consultant did say that Grace was where he would have expected her to be for this stage in her treatment and that there was still much that they could do to help her to turn around and get better. Importantly though, he also said that they still haven't been able to find a bacterium or a any indication as to why her condition is so bad. She has now had 3 tests for the virus RSV which have been positive (at the Royal Surrey), negative (at Evelina) and positive again (at GOSH) but there is no other indication of why her lung condition is so severe. The doctors say that they will continue to look for the underlying cause but nevertheless Grace is on lots of broad spectrum anti-biotics to fight all types of infection. Since then we have just tried to stay positive and keep believing that Grace is improving, just slowly and steadily.