I guess I blogged too soon......at 6am this morning I had a call from Chase to say that Daisy's temp had spiked to 41.5 and they had called an ambulance to transfer her to the nearest hospital. I woke the children and delivered them to my wonderful friend Maria (thank you so much Maria!!!) and bombed down the A3 to the Royal Surrey Hospital in Guildford.

In true Daisy style she was still smiling, however her blood pressure was unstable and she needed one of her favourite IV fluid boluses to stabilise her. Blood cultures have been taken but we are working on the assumption she once again has bacterial sepsis caused by a line infection. Antibiotics have been started (2 weeks and 1 day since the last lot were finished - a record!) and by late afternoon she was stable enough to be transferred back to our wonderful Queen Mary's Hospital.

As always it's two steps forward and one step back and at least this time she did not need to go into Paediatric Intensive Care....and she did get to go to Chase at last, though leaving by blue light ambulance was not quite in the plan....

We achieved another milestone yesterday. Since Christmas every time we have tried to get another break at our hospice our plans have been scuppered at the last minute, mainly by Daisy getting an infection and becoming very poorly. Well we managed it at last, and I took Daisy to Christophers, the Chase Hospice in Guildford, yesterday afternoon. I did not want to jinx anything so did not pack for her until the very last minute and there was a little glitch when she developed four strange new spots on her face (which the doctors think are some sort of allergy reaction).

She is there for two nights until Thursday lunchtime - theoretically this should give me a break but the reality is I have had a day of taking rubbish to the dump, sorting out the children's clothes, tidying cupboards and taking bags to the charity shop. I know to some people this will not be the ideal day off but for me it is a chance to start gaining some control back, over the past few months (and years) we have lived off our nerves, ultimately Daisy's condition is incurable and the uncertainty of what will be around the corner is always going to be there but at least we have learned to go with the flow of it now. This way of life is the norm for us now so rather than putting off sorting out the house until things get better I have decided to deal with things now. Things have not got worse and that's the best way to look with things. so rather than putting off all those house tidying projects I'm going to tackle them now....I have black bags at the ready and I'm braced to sort out the children's wardrobes once and for all!

I did speak to the nurses looking after Daisy this evening and she has a low grade fever so I'm keeping everything crossed this does not materialise into something more sinister. As always I sleep with my mobile and the home phone next to my bed so will not be suprised if I do get a call in the early hours of the morning. It will be a bit of logistical nightmare if the hospice do call to say that Daisy needs to be back in hospital however as Andy is in Manchester tonight so I am on my own with the three older children. We are blessed with the most wonderful friends and I know I can phone any number of good friends in the early hours if needs be to sit with the children if I do need to drive to Guildford.

Andy is in Manchester for a couple of business development meetings for his new business. He officially leaves his company on a redundancy package next week and we both agree that this is the best thing that could happen to us. He was looking increasingly tired and stressed and could not have continued at the pace that he was working, it is so nice to see him looking relaxed and even losing a few pounds in weight as a result of being made redundant! The one thing Daisy has taught us is to really put things in perspective - the most important thing is family time and creating happy memories. On Friday Andy will be able to attend one of Xanthe's school assemblies for the first time in years, that is worth all the bonuses in the world!

Daisy's first afternoon back at school

We are trying to take Daisy to school for 2 -3 afternoons a week to coincide with her breaks from TPN - I stay with her for the session as she is still so medically fragile but as you can see from the picture she is so happy to be back, even though all she can do is sniff and lick the crisps on her plate! (you can see the line to her enteral (milk) feed pump at the back of the chair - my role at school is basically to follow her around with the backpack containing the pump - from Global Brand Manager to official bag carrier....)

At last we have moved into a new chapter in Daisy's life. She is now able to tolerate 6 hours off TPN!!! This means for 6 hours of the day she does not have mixture of vitamins, minerals, lipids and other essentials to life dripping into her via a hickman line into a main vein - which means that she can leave the hospital for a few hours. This has made such a big improvement to the quality of Daisy's life as while she was on 24 hour TPN and a hospital based pump she was essentially tied to walking up and down the ward, now, we can get out and about. And the best thing is that just over a week ago we brought Daisy home for the afternoon!!!! This was the first time she had been home in nearly 8 months so it was a huge step for us all.

Daisy amazes me at how adaptable she is, she was so excited to come home and now takes it in her stride and is not even upset when it is time to go back to the hospital (at 5.30) - she even gets excited seeing her room in the hospital again as it is also such a part of her life. I'm so relieved that Daisy has transitioned into this new stage so easily, the night before she was due to come home for the first time I lay in bed worrying - for nearly 8 months our lives have revolved around Daisy being in hospital and we have adapted our home life to fit with this. Would it feel strange having her around the house again? Of course, I needn't have worried, from the moment she arrived home the traumas and worries of the past few months melted away. Lots of people have commented how the other children look so much happier too, they love to come home and play with Daisy and we have settled into a routine of sorts. The TPN can be taken down at 12pm and goes back up again at 6pm, it's amazing how much we can fit in during these short hours. One of the real bonuses is that I have been able to take Daisy back to school for a few sessions, it's a safe environment for Daisy infection wise as there are only 2 other children in her class, she also gets to spend time with the class next door which only has around 6 children. Not suprisingly we have seen huge leaps in Daisy's development since this new phase has begun, she is more vocal, is getting stronger on her feet and her sign language is racing ahead.

One of the unexpected problems has been a massive increase in Daisy's summer allergies, having been confined to a room for so long to suddenly be released to a pollen filled outdoors has meant that her nose is constantly streaming and any effort leaves her wheezing. Hopefully this is a small price to pay for a taste of life in the real world!

The reality is however that Daisy is still attached to a pump 24 hours a day. From a few months of age she has been feed her prescription milk feed via a pump into her tummy for 20+ hours a day. In order to maintain her blood sugars while off TPN and continue to stimulate her dodgy gastrointestinal system Daisy is attached to her feed pump all the time, running at a fantastic rate of 35 mls an hour - the highest she has managed since last summer. The feed all goes into her new jejunal tube at the top of her intestines, we know that not all of it is absorbed and she still has really runny nappies but this too is a step forward. The truth is though that being attached to a pump all the time is limiting her new freedom, I would love to see her make her own way around the classroom without an adult walking behind with her backpack containing the pump. She is too small and weak yet to carry the backpack so for the timebeing she gets freedom, at a price...

The next milestone would be to have a complete fortnight off iv antibiotics without any more line/blood infections. Next week she will hopefully reach this point so fingers crossed! We are waiting for the funding panel at the hospital to approve the use of specialist line locks which we can put into Daisy's Hickman line and decrease the risk of line infections. In fact waiting for funding panels to approve various things is going to be the common theme for us now. Despite our excitement at the thought of getting a mobile TPN pump following our last GOS visit, this has been stalled a bit by the fact that in todays wonderful NHS, devolved budgets means that no-one actually wants to pay for anything as it is always someone else's responsibility... So in the meantime we are still waiting for some appropriate funding panel to approve the mobile TPN pump which would ultimately mean that Daisy could have even more time at home or school and improve her quality of life even more. Another example of this crazy situation is Daisy's enteral pump which we use to give her milk feeds. She has had a mobile enteral pump for many years but while in hospital tends to use the hospital feed pumps. As we are now out and about for a few hours we use her mobile pump reverting the the hospital pump for overnight feeds. When I tried to order a box of giving sets (the tubes which attach to Daisy's tummy) which we use with the mobile pump I ran into a situation worthy of a Monty Python sketch - as Daisy is in hospital we cannot order equipment (ie giving sets) for use at home, but the only way she can be mobile at home is to use the mobile pump -again this is all down to who owns the budget for what. Much as I love our wonderful NHS, Daisy is testing their systems to their limits!

A while ago, in the early days when Daisy was still tiny I would have got angry and thrown my toys out of the pram at this situation but the years, and particularly the last 8 months have taught me patience and perspective. We are inching towards the day when we don't have to put her back into the car at 5.30 to go back to the hospital, and when the juggling of children, activities and Daisy will be focused around the home a bit more so these bureaucrats and their inconveniences are quite low on my list of priorities - there is always a solution as long as we stay focused on the goal. And in our case the goal is to be home for the summer.

Well the good news is we are back at Queen Mary's! Daisy had a new Hickman line placed and her picc line removed last Tuesday and was transferred back from GOS last Wednesday. It was wonderful to arrive back, everyone was so excited to see her and the staff had arranged all her toys and written "welcome back Daisy" on her white board. I could sense Daisy visibly relaxing, it's not quite home but at least it's closer to home and at Queen Mary's everyone knows her so well, she was innundated with visitors from the ward for the rest of the day.

The next day she was very subdued and I had a sneaky suspicion something was not quite right, this was confirmed later that afternoon when she fell asleep, something she only does during the day if she is ill, and woke up with a 40.2 temperature. It was actually one of the few times I just felt like bursting into tears then and there - not another line infection, and only 36 hours since the new one had been placed. She also developed copious runny nappies so I was also panicking about Cdiff, which (of course) Daisy has already had! Well thankfully she does not have Cdiff although the runny nappies are still continuing and look more like her gut deciding it's not going to work (not that it actually works anyway) but she does have a line infection and her gastrostomy site is colonised with staff aureus. Now having managed against all the odds to clear her of MRSA (methycillin resistant staff aureus) I don't want these little bugs to go and mutate into it so we are trying to be really rigorous with infection control procedures - not that we weren't anyway, it's just we all know what Daisy can do. So to cut a long story short she is back on IV antibiotics . This is such a familiar patter, she had only been off antibiotics for 8 days before the new infection, we have not managed a fortnight off antibiotics since the summer, that would be a real milestone!

We are, in Daisy fashion, making progress - ie; two steps forward and one step back but at least making some progress. The exciting news is that we are now on the radar of the Nutrition Nurse Specialists at GOS. To be able to go home we have to be on their radar as they organise the home TPN package, they also insist on children being a minimum of 10 hours off TPN a day(they have moved the goalposts, I had heard it was 8 hours!). The best thing is they agreed with our need to get Daisy out of the hospital and getting some sort of life outside of her isolation room as 7 months in isolation is not conducive to neurodevelopment and probably some sort of crime against her basic human rights! So we have actually left GOS this time with a plan - both to start giving Daisy breaks from TPN so that she can get outside and to try and get a mobile pump for times when she is on TPN.

The former is probably easier to achieve than the latter. This week, we implemented the TPN weaning plan with the aim being to get her to tolerating 6 hour breaks off the TPN. She still will be permanently attached to her other pump which drips milk into her jejunostomy, but that has been a permanent fixture 24/7 since she was just a few months old (and I promise never to complain about being tied to a pump again knowing now what the alternative is!). As of today she is tolerating four hours off her TPN and her blood sugars, though on the low side are reasonably stable, I am just hoping that we can achieve 6 hours by next week as I would love to be able to take her back to school for a couple of hours each day. I am also tentatively hoping we can bring Daisy home for a few hours this weekend - I just hope nothing scuppers this plan as I mentioned the possibility to the children and they are so excited at the thought.

Getting a mobile TPN pump is, as always, a lot more complicated than it should be. The plan is to start Daisy on the home delivery service while still in hospital - this means that her TPN would be made up by a pharmacy and 2 weeks supply delivered to her at a time to be used in conjunction with a mobile pump. This will work fine when we are at home but having a child still in hospital accessing a home delivery service is proving a bit difficult for the good old NHS to get it's head around. The issue as always is who pays for it. It Daisy was at home it would be the Primary Care Trust (PCT) but she is in hospital and so they insist that the Hospital Trust should pay, as the delivery is to a hospital and not home the delivery company say that VAT is applicable on the TPN and anyway the hospital trust are saying they have their own TPN pharmacy and so will not pay for something they can provide (albeit without a mobile pump), as Daisy is not currently an inpatient at Great Ormond Street they are not going to pay so we have reached a stalemate until someone out of the three trusts sees sense. I'm just focussing on getting enough time off TPN for Daisy to have some time out, if these silly conversations are still happening by this time next month I may consider a major toys out of pram episode but you never know, maybe it will be all sorted!

The other useful tip we got from the nutrition nurse was the use of line locks to help stop infection. Basically when Daisy's hickman line is not being used we can put a drug called Taurolock into the line to kill any bugs which may be pushed into her blood stream when the line is used again. Apparantly since using this drug they have seen a massive drop in line infections. The pharmacists are on the case and I hope we can start using it soon as we cannot risk any more line infections or losing any more lines.

Anyway, inspite of all the continuing issues, it's fantastic to be home, sleeping in my own bed and spending quality time as a family. The children have been so pleased that Daisy is back close to home - both Jules and Xanthe wrote about it in their school diaries. They are definitely more relaxed now we are out of GOS as they know that the only reason we are ever in that hospital is when things are not so good. I'm just really hoping we get to bring Daisy home for a few hours this weekend and do normal things like sit on the sofa and watch TV, these are things that we all take for granted but when your family is torn apart for so long like ours it's the little things that are so important.

So, you know what it's like, you transfer to Great Ormond Street for a couple of days for a quick upper and lower endoscopy and end up staying a month....in fact it is now seven months (give or take a few days) since Daisy has been home and coming up to a month since we came to Rainforest Ward.

The good news is that she is so much better than a week ago, her additional potassium is being weaned down and she is off all antibiotics and anti-fungals - this makes me twitchy, she does not last long without needing some sort of weapon of mass destruction coursing through her veins - I will remain positive however, maybe this time the line will last....

The plan now is to take out her picc line and put in a new Hickman line early next week, theoretically then we should be good to go although we will let Miss Daisy decide on that. It has been nice to have Daisy reasonably well over the past few days as we have been able to use the fantastic play facilities at Great Ormond Street. The best thing is the other children have also been able to use the play centre too which has taken some of the pressure off entertaining them. Today Daisy decorated fairy cakes with a group of other children including a young boy on a "Berlin Heart" machine, which is an artificial heart. Great Ormond Street is probably one of the few places in the UK where a little girl being kept alive by a complex mix of chemicals dripped into a central line into her blood stream can play with a boy being kept alive with an artificial heart and no-one bats an eyelid!

I had a good chat with the gastro dietitian today. Understandibly they are very twitchy about pushing Daisy too quickly particularly given her recent experiences. For Daisy to be able to have night time only on TPN she would need to tolerate 34mls an hour of feed a day, with possibly more fluid during hot weather because of her heart and kidney problems. This currently seems a long way off so we are aiming for 2/3 time on TPN which would make us eligible to come home as the minimum that is allowed is 8 hours off TPN. At the moment she is managing 14mls/hour of feed into her tummy over 24 hours but it is difficult to push this any more at the moment as she will need to be starved again for another general anaesthetic next week when her new Hickman line is put in, and we will be back at square one as Daisy cannot go straight back onto full feeds after being starved and will need to build up ml by ml. As always, two steps forward and one step back, however I am optimistic that with the new feeding tube directly into her intestines we can try and aim for our 8 hours off TPN and get home (at some point this year!)

I have now given up on the bed in Daisy's room - basically she is going to wake up and cry whether I am there or not and I need a decent night's sleep to keep functioning, whereas the night staff can go home at the end of their shift, I cannot. For the past few nights I have left the hospital at 8.30pm and slept at home leaving for the hospital at 7.30am the next day. I am looking forward to being back at our local hospital, hopefully next week, it is only 12 minutes drive away and suddenly that life seems so much less complicated than a Northern Line commute to Great Ormond Street. It's over to you now Daisy, show us that you can turn the corner and get some time off that TPN. I'll do all the training I need and put in as many hours as required in the hospital just to get her home.

People keep asking me how come I am so chilled about things, I guess over four years of this bumpy ride with Daisy has taught me to try and go with the flow and get through it in one piece for both our sakes, I have to take each day and trust that Daisy will continue to defy the odds. I was told by one of our geneticists who knows Daisy well to forget about what the books say and look at Daisy for my strength, this morning she was sat on my lap smiling and waving at her consultant and to look at her you would not believe what she has been through over the past few days (unless of course you looked at her blood results, which tell a very different story).



So last Monday she was scheduled to have her infected Hickman line taken out following a weekend of high temps and lethargy. Unfortunately and in a bizarre way our old nemesis of MRSA came back to haunt us. Daisy is still categorised as MRSA+ in this hospital inspite of all the clear swabs and cultures, the infection control rules here state that the child must be out of hospital for 6 months for this category to be lifted. No-one believes for one minute that Daisy is still colonised with MRSA but unfortunately while she has this against her name she has to be isolated and when it comes to surgery she has to have the last theatre slot so that the theatre can have a "level 2 clean". This situation was becoming farcical, as Daisy was last on the list , the interventional radiologists did not have time to take her line out and her condition was rapidly worsening, her peripherals were shutting down and she needed fluid rescuscitation....cue another trip to the Patient Advice and Liaison Team (Pals) for me and strongly worded emails to infection control from Daisy's medical team. Thank goodness everyone saw sense and her MRSA+ status was lifted and she was scheduled for the next day, second on the list. Not a moment too soon as she was really becoming poorly and also needed a blood transfusion as her haemoglobin had dropped. So that all happened on Tuesday - infected Hickman line whipped out, temporary picc line placed and a blood transfusion given



That should really have been the end of it, and in some ways it was, her temperature came down, but normally a blood transfusion would give Daisy more energy and colour and in this case it didn't. She looked grey and lethargic the next day and her blood gas results showed that her her potassium was dangerously low and her sodium was very high. She was started on extra fluids but we have not been able to bring her potassium levels up. Some of the meds she is on lower potassium and some of them are damaging to the kidneys which play a role in how potassium is used in the body. The past week has been a cycle of taking bloods, running a blood gas, finding her potassium is too low, putting up massive potassium infusions, checking her bloods again....... This is risky, too little potassium can cause the heart to stop, Daisy has cardiomyopathy anyway so this is extra worrying, too much potassium can kill you and we have been pumping maximum doses into her. She has been permanently wired up to an ecg monitor and the doctors have been walking around with worried looks on their faces. One of the meds which suppresses the potassium has been stopped and her immunosuppressant iv infusions have been stopped as they can interfere with the kidneys. This has given us another conundrum - stopping these meds will hopefully help Daisy rebuild her supply of potassium and hold onto it, but not having the immunosuppressants may cause the inflammation to flare up taking us right back to square one and undoing all the progress of the last few months.....

This plate spinning is too much for me, I'm leaving it to her big cheese consultant to work out. He is the expert and Andy and I have confidence that he will do the best thing for Daisy, always aware that our number one priority is to get her home at some point. At his point however we begin our third week at Great Ormond Street, today we had the first potassium level which was in normal limits, in my new found understated manner I did not jump for joy as I need to see a few of these results before being convinced that she is holding onto her potassium and turning the corner. The levels that are required for her immunosuppressants to work are now too low and so a decision needs to be made very soon about what to do next before her gut flares up. Feeds through her jejunostomy seem a long way off at this point but this is the only solution and at some point very soon we need to try again as this is the only way to reduce the reliance on TPN and the vicious cycle of infection and damage it brings...

I'm waiting for someone in the street to say to me "cheer up love, might never happen" then I can floor them with our story and add the additional icing on the cake that Andy was told on Friday that his role is redundant and he will have to apply of another role within the company or accept redundancy, still, it could be worse I suppose, we have just got through another week where Daisy put the frighteners on us and we have lived to tell the tell.

I always give up alcohol and chocolate for Lent, I am particularly proud that I have managed to see it through this year because quite frankly, come the end of lent I am going to enjoy the biggest chocolate and red wine hangover known to mankind!

I suppose you could say that we are having a typical Daisy stay at Great Ormond Street in that nothing is going to plan...The good news is that there has been a major reorganisation on Rainforest and the ward is like a different place, everyone is friendly, caring and proactive and really representing the best of one of the leading children's hospitals in the world. This has been such a relief, particularly as you have probably guessed we have overstayed our allocated time on the ward...



Daisy has developed another bacteria infection of the blood ontop of the candida in her bloodstream and urine infection. She is now on antibiotics I have never heard of and apparantly starting to move into last resort categories as the bug she has developed here is one she has had before and seems to be resistant to some of the usual antibiotics she is on. Her hickman line clearly has to come out and this is now scheduled for Monday with insertion of a temporary picc line to give her chance to clear her infection. Regular readers will know we have not had good success with previous picc lines, they should last a few months (they are like semi- permanent lines) but Daisy's only lasted a week resulting in another blue light dash to GOS for a new line. I am wondering if they will keep her here now until the infection clears and they can put a new Hickman line in . This will really test the new Rainforest happy attitude - previously I would have heard mutterings about needing the bed space but instead the staff have been fantastic and really concerned just for Daisy's well being and the fact that things have not gone according to plan for us.



Logistically things will get difficult if we stay any later than the middle of next week. Mum goes back to Wales tomorrow and Andy and I will juggle staying at the hospital and managing the school run - probably Andy will stay here for nights and I will commute back and forth during the days with the children at after school club and at friends houses...



There has been good news though. Daisy had her upper and lower endoscopy on Thursday and the inflammation has decreased which means that the immunosuppressants and steroids are working - yippeee!! Her doctor wants to keep her on this therapy for the forseeable future so her risk of infection will still be as high. He also placed a jejenal tube for feeding Daisy at the top of her intestine, bypassing her stomach altogether. We are hoping that we can increase some of her feeds using this method and get more calories into her rather than just via her TPN. The endocrine doctors also feel that Daisy should be able maintain her blood sugars for small breaks from the TPN with just milk feeds. The plan, once Daisy is over this infection, is to try and achieve longer and longer breaks from the TPN with the aim of 8 hours a day off. She will still be attached to a continuous feed pump for milk feed but this was Daisy's life before TPN and I promise I will never complain about carrying a pump around again having seen the alternative!!!



The home word still has not been mentioned - we need to achieve these breaks from the TPN before this can happen so the reality still is June/July. Being superwoman I am already contingency planning for Daisy being in hospital during the long school holidays although it would be nice for her to have long enough breaks from TPN to be able to come home for the best part of the day and go back to the hospital at night.



Andy stayed at the hospital last night and I was able to get home overnight, fitting in a quick meal out with some friends and a chance to catch up on some gossip - these moments keep me sane and de-institutionalise me for a few hours! It was great to wash my hair, the shower on Rainforest still runs on lukewarm and you have to brace yourself to get into it so hairwashing is out of the question. The best bit was sleeping in my own bed - luxury! Did a quick Primark shop with Xanthe in the morning to pick up dungarees for Daisy as they are great at holding Hickman lines and enteral tubes in place, then we all drove up to GOS. Fortunately siblings can go to the Activity Centre here on the weekend so while mum sat with Daisy Andy and I were able to have a quick bite to eat and a coffee together, a rare treat these days. The combination of a sick child, 3 hyperactive siblings plus tired parents/grandma is not a great one so Andy has now driven everyone home and I am back to my hospital bed and prison regime!



Xanthe is singing at the Albert Hall on Monday evening and we have been promised that Daisy is first on the afternoon theatre list so if our plan works out of Daisy's respite nurse sitting with her for the evening and various children being delivered to the Albert Hall we may just get to all be able to go. As we know, the best laid plans........



I am relieved that Daisy is at GOS at the moment, if we need it paediatric intensive care is just down the corridor, hopefully she won't need it, but as always her happy smiles really don't show how ill she is. But inspite of it all we are making progress, and slowly, very slowly, we are inching towards the day when we can come home.