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.

ECMO Day 2

Thursday 14th December (our 4th Wedding Anniversary)

Grace had a stable night on the ECMO machine but the GOSH ward (Cardiac Critical Care 4) is closed for much of the morning for other procedures and so we wait to see Grace until after this and the ward round are over. Later in the morning we read Grace some stories and Matt played her some of her favourite music from his IPod. All the nurses said how beautiful Grace is. Grace's Granny visited as well today and she started to wake a little bit but looks uncomfortable. I helped the nurses to do Grace's eye and mouth care and to wash her.

At around 7pm, the nurses moved Grace slightly on to her side to check whether her back was getting marked by the sheets, etc., Grace pulled a face, looked very uncomfortable and as if she was about to cry. She also started to cough but then all I could see was that blood had started pouring from her neck at the site where the tubes go in. All I could say was NO! Matt immediately pulled me out of the room and we went to a small quiet room while the doctors worked on Grace - we could see that they had all appeared immediately and were doing what they could to get Grace stable again. This is the most frightened I have EVER been in my life and I am terrified that someone is going to come into this little room with bad news. I can't stop crying and Matt has just gone white but is being very calm. A young nurse keeps coming to update us - the canula in Grace's artery in her neck became dislodged and her heart stopped for around 4 minutes. However, during this time, the Consultant was 'bagging' Grace and keeping her oxygen levels up, she was given Adrenaline and a nurse was doing compressions on her chest. The surgeon then arrived straight away and repaired the canula in Grace's neck 'vessel'. Apparently this is now in a much better position and Grace was stable and back on the ECMO machine in around 15 minutes from the 'incident'. We are in shock and can't believe what just happened. We are so grateful that the doctors acted so quickly and that it doesn't seem as though Grace will have suffered any permanent damage from this. However, we are told that lots more tests will be required to ensure that Grace's heart and brain have not been adversely affected. This terrifies me as I can't imagine Grace being anything other than her normal, clever, cheeky self when she recovers, although all I can think of at the moment is that SHE HAS TO recover and soon.

The Consultant tells us that they will now keep Grace quite muscle relaxed and sedated in order to stop any further movement in the canula in her neck. Obviously this is a good idea. They also tell us how rare a de-canulation is and how unlucky Grace has been - AGAIN. Apparently this incident may have delayed Grace's progress on ECMO somewhat and this might mean that she is on ECMO for a bit longer than might otherwise have been the case. Matt and I went for a stiff drink to the local pub near GOSH - aptly named The Perserverance. We then went backed and kissed Grace goodnight and tried to sleep for the night. Grace's neck and hair are now soaked in blood but the nurses have cleaned up the sheets as far as possible and this is the least of our worries!

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.

Arrival at GOSH

Tuesday 12th December

There was a long handover between the two teams of doctors when we arrived this evening. I was told that I could stay but I was clearly in the way and so I waited in the parent's room after being asked a third time whether I wanted to wait outside and get a drink. When Matt arrived, we were told that we could go back in but that the nurses had just handed over and that the new nurse was doing all her checks, etc. I asked the nurse whether Grace was likely to wake up any time soon, knowing that she had been sedated and muscle-relaxed for the journey, etc. The nurse gave me a mini lecture about how they don't allow children to wake up and trash around while receiving this type of treatment, etc. Matt and I had never felt more unwelcome and I couldn't bear to stand in that room, even though we just wanted to be near Grace - we left after only a few minutes. I phoned a college friend who is a doctor and explained what had happened - I was SO upset. She said that I should go back in and explain how we had been made to feel and speak to the nurse in charge if possible. I could tell that Matt was just plain angry! As we started to go back in, however, the nurse and two of the GOSH doctors / Consultants involved in Grace's care came out to speak to us. They went over Grace's history with us again but spoke to us as though we were idiots. Matt (politely) told them that we understood words like 'oxygenation' and didn't need to be treated like children, i.e. we wanted the facts, information about Grace's condition and treatment and to be kept informed at all stages. The doctors accepted this and started to treat us a little more how the Evelina doctors had. The upshot seems to be that they still don't know quite what has caused Grace's lung condition (ARDS - Acute Respiratory Distress Syndrome) but that they will continue to investigate this. They do not consider that Grace needs ECMO yet but will continue to monitor her as had been done at the Evelina.

We are given an Emergency Night Room in a building nearby to GOSH called The Italian Hospital. It is hot and sticky and uncomfortable though we try to get some sleep in order to be with Grace tomorrow.

Evelina (Day 5)

Tuesday 12th December

Grace had another quite stable night. Her right leg remains very swollen but has recovered its normal colour which is good. Her saturation levels this morning were 85 -87 from 80% concentrated oxygen. Grace was also often quite awake, opening her eyes and responding to us but particularly coughing. The Physiotherapists saw Grace again and got up some more secretions from her chest. After their rounds, the Consultants told us that they didn't see any need for ECMO at the moment and were generally pleased with Grace's progress. Another doctor also did an echo-cardiogram on Grace's heart and said that everything is fine with that. They also do an ultrasound to check for fluid around Grace's lungs and say that the existing drain should be sufficient to get rid of this. Grace blood gas tests generally improved by lunchtime today and she was oxygenating to about 87% from 80% oxygen and with lower pressures than previously. The doctors are also trying to wean Grace off the morphine and have decided to do a bronchoscopy this afternoon to try to take samples from inside Grace's lungs for analysis and to see if they can identify the bacteria that has given Grace this pneumonia. The Bronchoscopy is fine and is done quickly but Grace's oxygen saturations take a while to recover from this and by 4.30 pm she is still only at 77/78 saturations from 85% oxygen. The Consultant then tells us that he is 'losing his nerve' and would prefer to transfer Grace to Great Ormond Street Hospital (GOSH) today. He thinks that this is really only an insurance policy as he doubts that she will need ECMO but obviously wants to be sure that there will be a bed available if she does need it and that she can be transferred when she is as stable as possible (the other UK centres where ECMO is available are Leicester, Newcastle and Glasgow and obvioulsy beds are limited). We are obviously even more scared at the prospect of this but are willing to do anything to ensure that Grace gets the appropriate treatment to help her recover asap - if that is ECMO then so be it. By 6.30 pm the Evelina team were preparing Grace for her transfer to GOSH - I went with Grace in the ambulance. As the portable ventilator could not cope with the high oxygen pressures that Grace now requires, she was 'bagged' for the entire journey (only 15 minutes or so by ambulance) by one of the doctors but her saturation levels remained in the 80s for this time. I seem to be in a sort of daze and can't really appreciate what is going on - I just hope that this is best for Grace.

Evelina (Day 4)

Monday 11th December

Grace had a fairly stable night again and her nurse was very thorough but very gentle and combed her hair, etc. Grace was placed back on her back at about 6am but remained OK. The Physiotherapists visited this morning and suctioned Grace's lungs for secretions. The doctors' general consensus, however, seemed to be that the secretions on her lungs were a secondary issue and that the main issue was just the oxygenation of her blood. By the middle of today, Grace was turned back prone and her oxygenation levels were around 85 from 85% concentrated oxygen. The doctors are obviously still concerned about these oxygenation levels and worried that damage could be being caused to Grace's lungs by the pressures at which the oxygen is being pushed into her. Obviously we are worried about this too and asking questions about whether she will be affected by this later in life but all we can really be concerned about now is if and when she will start to recover properly. After the afternoon ward round, the Consultant tells us that they are still seriously considering ECMO and have referred Grace to Great Ormond Street and are discussing with the Consultants there whether Grace should be moved there, ready for that treatment if it becomes necessary. We have been told about ECMO generally but we know that there are lots of risks involved and clearly we are very scared about it and hope that Grace will just start to recover on her own and with the help of the antibiotics that she is already on.

Grace's venus line in her right groin was obviously obstructing the blood flow from her right leg this afternoon and her leg is very puffy and pink. The doctors therefore move this line to her left groin area and raise her leg to help this recover. Grace was given some blood this afternoon but the main concern was that she kept trying to wake up and lift her head. This evening I helped the nurses with Grace's feeding (through a tube) and her eye and mouth care. Her oxygen saturations remain in the low 80s and I just keep hoping, praying and holding Grace's hand and trying to pass some of my energy to her.
The doctors then put Grace back on her back and she responded quite well, with saturations in the high 80s from 90% oxygen. Despite some suctioning of her lungs, Grace remained quite stable and her saturations recovered quite quickly after being off the ventilator for short periods. The doctors decided to leave Grace on her back for the night and raised her right leg to try to help the swelling come down. We are trying to sleep but are clearly still more worried than we have ever been. The whole of the rest of our lives seems to have fallen away somehow and I just keep thinking that I never appreciated Grace enough and how perfect and precious she is - I can't stop crying.

Evelina (Day 3)

Sunday 10th December

Grace had a fairly stable night and the doctors are quite encouraged by her progress. Mid morning they turned Grace back on her back but she tolerated this quite well and her oxygen saturation levels remained in the 80s and 90s. At 12.30 pm, the doctors changed the tube in Grace's throat to a nasal tube and made sure that the throat tube was the right size. Previously, the tube inserted at Guildford had been a little small and there had been some leakage of air around it, which obviously didn't help with maintaining the oxygen pressure inside Grace's lungs. This afternoon the doctors then put Grace back on a conventional ventilator and obviously we were really pleased and encouraged by this. Grace's saturation levels fell very slightly but the doctors were still content with these levels. In order to try to improve these levels as much as possible, they placed Grace back prone but then discovered, by looking at an X-ray taken earlier, that her tube needed to be moved further down into her wind-pipe / lungs, hence they needed to move her back to supine in order to do this. Clearly I am still very upset by everything that is going on but this just makes me angry and I feel that the nurses should have been more thorough in checking the X-ray results first. However, I don't want to criticise them as they have a very hard job and are working brilliantly to help my little girl.

Later the nurses sucked some secretions from Grace's lungs which were very thick and horrid. She doesn't generally respond well to the suctioning (which requires being off the ventilator and just being 'bagged' for short periods) and it takes a good few minutes for her oxygen saturations to recover after this procedure. By 6pm, her saturation levels are down to 78/79 from 90% concentrated oxygen, despite being placed back prone. The doctors are consequently considering perhaps putting Grace back on the oscillator. They have also received news from Guildford that Grace had a positive RSV test from some of her samples taken there. RSV is a severe cold virus that can cause significant lung infections in infants and could explain why Grace is so poorly and could also be the reason why another bug has affected her so badly. By 9pm though, Grace's levels were generally recovering and the doctors were just very carefully checking her blood gas tests for Co2 levels and lactic acid, etc., all of which would give an indication of whether Grace is still struggling to oxygenate her body. We stayed with Grace for most of today, read stories to her and just tried to remain positive throughout - which is hard but we are doing our best.

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.

Evelina

Friday 8th December

Having drained around 110ml of fluid from around Grace's right lung, the Evelina retrieval team took myself and a sedated, muscle-relaxed, Gracie - now breathing via a ventilator - to the Evelina Children's Unit at St Thomas' hospital near Waterloo in London. The hospital is very modern and not like anything I have seen before. The equipment is all ultra-modern but I think anything would scare me at this stage as I still can't believe that my little girl is in a paediatric intensive care unit. We arrived at about 8pm and the doctors immediately assessed Grace and put her on a 'conventional' ventilator. Gracie is now needing 100% concentrated oxygen and still only saturating to levels in the 80s (normally, we all breathe air containing only 20% oxygen and our lungs saturate that oxygen into our blood at levels of 98 -100%). The doctors put in a femeral line for Grace's drugs and she has been put on morphine and clonadine (for pain and sedation), is still receiving fluids and is muscle-relaxed. We keep talking to Grace though, as all the nurses do, as she can almost certainly still hear us despite not being able to respond. The doctors also do X-rays which show that Grace's lungs are very cloudy and not functioning properly at all. Later in the evening, the doctors tried to replace Grace's mouth tube (inserted in Guildford right before the transfer) with a nasal tube but her oxygen saturations fell very low and so they decided against this for tonight. Grace's Daddy took her Granny home and I was given a bed on a ward upstairs from the paediatric ICU. I hardly slept though and went downstairs very early in the morning to see that Grace was still stable and whether she was awake. I am so, so scared and can't stop panicking and crying - each time I walk in the ICU I feel as though my heart is being squeezed and I can't breathe properly until I see that she is OK and the nurses tell me that she is stable. I just can't lose my Gracie.

The Royal Surrey - Guildford

Wed 6th December - Friday 8th December

Upon arriving at the Royal Surrey and further to Grace's X-ray and tests, we were told that, in fact, Grace has a rather severe pneumonia and needs to be on oxygen for the night. Gracie hates wearing the oxygen mask and constantly tears it off. She keeps saying 'I'm so upset' and I am at my wits end trying to comfort and help her - I hate seeing her like this. Gracie was still tired but was drinking sips of water and, despite fighting me to keep her oxygen mask on all night, slept fairly well. Her oxygen saturations remained in the high 80s and 90s and the doctors seemed generally happy with this.

Today (Thursday 7th), Grace remained tired and didn't eat anything all morning but seemed to perk up in the afternoon and ate 2 jellybabies! Her oxygen saturations didn't improve much, however, and the doctors mentioned that she might, in a worst case scenario situation, need to be intubated and put on a ventilator. Nevertheless, Grace watched some of Monsters Inc. and seemed to brighten up. As she wasn't drinking, however, she was put on a fluid drip, including saline, glucose and potassium. Grace was also given an ultrasound to check for fluid on the outside of her lungs but the doctors said that the amount of fluid found was not necessarily dangerous and so it wasn't urgent to remove this right away. Despite still being on the oxygen and hating the mask, Grace slept slightly better and her Daddy and I took turns looking after her and getting some sleep in a room provided for us to use.

Today (Friday 8th), Grace is still very tired and unwell and her oxygen requirement has gone up somewhat during the course of the day. She also had a temperature at various times today which had to be controlled with Paracetemol (Calpol). This afternoon the doctors told us that her condition was at the very edge of their comfort zone and that they thought that she needed to be moved to another specialist hospital to drain the fluid on her lungs and manage her condition. I am trying to keep it together but am obviously terrified by this - we are already in a 'high dependency' ward and are obviously moving up to some form of 'intensive care'. After a few hours of very little information, we have been told that a bed has been found for Grace at the Evelina Children's Unit at St Thomas' hospital in London. We were then moved there by ambulance this evening by an Evelina retrieval team. Almost immediately upon arriving at Guildford, however, the team sedated Grace, intubated her and drained some fluid from around her lungs. We are SO, SO worried about her and can't believe that a little girl who was so healthy and full of energy 2 weeks ago can now be on a ventilator and so, so poorly.

Poor Gracie has Pneumonia

Wed 6th December 2006
Grace Lauren Disney is my beautiful (nearly) 3 year old daughter. She is clever, feisty, confident and fun and has always been healthy since her birth (2 weeks late) on 15 January 2004.

Grace was admitted to The Royal Surrey Hospital this evening. Grace originally developed a cough a little while ago but this only bothered her a little at night and she was generally fine. However, on Saturday (2nd Dec), Grace developed a high fever and so we gave her some Calpol and cared for her at home. On Sunday we also gave her children's Nurofen to ease the fever and, despite being pretty cranky, she ate and generally seemed to be on the mend. This continued on Monday but Grace was no worse. However, yesterday morning when Grace awoke she seemed to be taking quicker, shallower breaths and so we (her Granny and I) took her to our GP. The doctor examined Grace and said she probably just had an 'upper airway viral infection' and so we should continue as we had been doing with the Calpol and Nurofen - alternately each every 6 hours or so. Grace didn't eat anything for all of yesterday though and actually asked to go to bed at around 6pm, which is very unlike her. This morning we became more worried and again took her to the GP. This time I broke down in the GP's office and explained how worried I was. The GP (a different one) was understanding, if a bit patronising, and said that Grace almost certainly needed some antibiotics to help her fight off this virus. She prescribed Amoxicillin suspension and suggested that we administer this immediately and again later today but also pre-booked us another appointment for the evening surgery and suggested that we return if we were still concerned. At 5.40pm, we returned to the surgery and were told by a third GP that she probably had an early pneumonia and should be admitted to hospital for a chest X-ray and appropriate treatment. I am obviously really worried and will stay with Grace in hospital tonight to make sure that she is properly cared for and gets better asap.