Julie will not be pleased.

Thursday 25th January 2007

When Julie sees this picture she will not be pleased. We are all home, Grace was released from the Evelina Children's Hospital on Tuesday.




I'm adding this on behalf of Julie as she has not been in the position to update the blog. Grace is doing extremely well, she started walking and talking about 4 days ago.

There has been a few complications, but I will let Julie tell the story.

This post will be deleted once it's updated.

Regards

Matt

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!

Christmas Day

Monday 25th December

Needless to say that it doesn't feel like Christmas and we wake up in our stuffy little room at GOSH. We have said Merry Christmas to a few people but other than that it could be any other day - although we did get a free breakfast in the hospital canteen! When we got to the ward though, it was quite festive and the nurses were all doing their best to keep up the spirit. Grace received about 9 beautifully wrapped gifts from Father Christmas (the hospital must receive quite a few charity donations at Christmas) and we opened 2 of the softer ones to see if we could increase Grace's collection of soft toys (some of her own - like Nelly - and a number of new ones that have been given as gifts since she's been in hospital). Grace has got a Jake Tweenie and a lovely puppy in a kennel - great gifts for her age group so we are very impressed with Father Christmas and his hospital visits!

Grace's lung volumes were in the 80s today and we couldn't believe how they've improved. The nurses say that she is doing really well and that the doctors have even mentioned possibly coming off ECMO tomorrow. We can't believe it but are so grateful for this Christmas present - its more than we could have hoped for and all we wanted. Grace remained stable all day and we read to her and tell her about Christmas and all the good wishes for her, etc. We visited Wendy and Stu for an hour or two this evening but otherwise just stayed with Grace. We still miss her so much.

Christmas Eve 2006

Sunday 24th December - Christmas Eve

On the way back from the ward late last night, we discovered that our car, which was parked on Queen's Square near the hospital, had been broken in to. The near side back window was smashed and Matt's crash helmet had been stolen from the boot - where it was well hidden. We report it at the Police Station and get the Autoglass visit sorted. Strangely, this is just a minor annoyance really and neither of us can be bothered to get upset about it - clearly we have more important things to worry about at the moment!

Grace had another stable night and was fairly stable and settled all day today. Her lung volumes (they call these tidal volumes) have improved even more (sometimes reaching the 60s) and another Consultant tells us that her X-ray is even more improved and that they are happy with her progress. Again we are relieved but remain cautiously optimistic. We went to Midnight Mass and prayed very hard for Grace and all the other children at GOSH! I am not even religious if I'm honest but it doesn't seem to matter. Matt and I have been visiting the Chapel at GOSH quite regularly over the last few days - it seems to help somehow. After the Mass, we read a story and kissed Grace goodnight - telling her that Father Christmas was on his way.

Getting better?

Saturday 23rd December

The ward called us in the early hours - I nearly had a heart attack! It turns out that the nurses think that there may be some clots in the ECMO circuit and they think that the circuit might need to be changed. The nurses and doctors have warned us about this briefly earlier but it has not yet been necessary to consider this (and Grace has already been on ECMO for 10 days now). The circuit is then changed and by 3am everything is stable. Apparently Grace coped really well with not being supported by the ECMO machine for a short period and this has given the doctors more reason to be encouraged by her progress. Eventually we try to relax and sleep and consequently oversleep in the morning.

When we arrive on the ward the nurses say that Grace's X-ray from today is looking much better than it did previously and that her infection markers are also down which is good. Grace's lung volumes (the amount of air that her lungs are taking in and out, as measured by the ventilator) have also improved and we can see this for ourselves (the number are in the 40s rather than the 20s now). Grace also had 2 lots of physiotherapy today and the physiotherapist has managed to get quite a lot of secretions up from Grace's lungs. Again this is a good sign apparently. We are so relieved that things are starting to look up, but again don't want to rely on anything too much. We do find time to watch some of the Strictly Come Dancing final though - my favourite and Gracie usually watches it with me - I miss her so much and can't wait for her to wake up and smile at me again. It certainly doesn't feel at all like Christmas without her.

Found the Bug (we think)

Friday 22nd December

It seems as though everything is getting ready to close down for Christmas but nothing has changed for us. We are keeping positive and just hope that the ECMO is working for Grace.
In the morning, the nurse told us that the respiratory expert had been to see Grace today and that he was happy that she was making steady progress whilst her lungs were being rested on ECMO - at last some really concrete good news - I think, but then we don't want to get too excited about a recovery as we have been there before and just felt desperate afterwards. After the afternoon ward rounds, however, I spoke to one of the doctors / fellows on the ward who I had not yet really met. She said that the DNA tests that they had been doing on Grace's blood had managed to isolate the pneumococcus bacteria and that this was therefore the probable cause of Grace's lung problems. However, there is no need to change Grace's treatment as she is already on broad spectrum anti-biotics that should have killed / be killing all of this bacteria. Apparently it is just unlucky for a toddler like Grace to get this sort of bug on top of a virus like RSV - although a test done today also showed that Grace is now RSV negative. The doctor also confirmed what the nurse had said earlier about the slow but steady progress. We are obviously relieved that some corner appears to have been turned but I can't forget that Grace is still REALLY, REALLY poorly and won't be back at home any time soon. Later this evening, one of the nurses aspirated Grace's stomach (as they often do to see how well Grace is absorbing the enriched milk feeds she is being given) when she was rather more awake than she should have been, i.e. the sedation should have been given earlier we think. The upshot was that Grace was rather upset by this and her pulse rate and blood pressure soared. I was so scared again - despite the nurses saying that they had it under control. This just reminded us again that we are so far from being out of the woods! We kissed Grace goodnight and tried to calm down after everything seemed to be OK.

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.