Daisy having a good day - long may it last!!!!
I only stay at the hospital if we are at GOS or if Daisy is really poorly and at risk of being transferred during the night, we only live 10 mins drive away so we are really lucky. I leave most evenings at around 10.30pm and I drive back at 8.30am in the morning after dropping the other children at a friend's house.

Every morning I drive to Queen Mary's wondering what will greet me when I arrive, sometimes I even know in advance as I will have had a call from the nurses before I have even left the house..........

Last Friday I drove in hopeful that this would be the day that we would have the final all clear for Daisy's blood cultures & a third set of clear MRSA swabs, this was also the first day that she had stopped the 10 hours worth of toxic drug infusions and we could start moving on with treating her underlying bowel condition......yes well clearly this was not going to be a good day, I walked into Daisy's room and she sat crying her eyes out pointing at her arm which was swollen up like a Michelin Man - her picc line had tissued, meaning in short that it had to come out, we had to stop the TPN, get a cannula into her before her blood sugars dropped dangerously low and get her into a hospital that could place a central line asap. Once again my plans to leave the hospital a little earlier for a change that evening so that Andy and I could have a curry and a bottle of wine infront of the TV were clearly not meant to be.

As always Daisy loves to cause a drama, the doctor's ward round was put on hold as they attempted to get some line access into her and start fluid and her consultant delayed her clinic as she contacted our gastro consultant at GOS to get her transferred asap. I was dreading having to go to Rainforest so was very pleased to be told that as Rainforest had no room for us (and in their infinite wisdom had suggested that perhaps a new line could be placed at the local hospital - do these people not read her notes?????) , instead bed management had got us a cubicle on Tiger ward. This was good - it's in the new modern part of GOS so all cubicles have en suite bathrooms and Daisy has spent a week on this ward last year when she overstayed her welcome with breathing difficulties following an MRI under general anaesthetic. During that time the staff were fantastic and unlike the staff on Rainforest I was completely unaware of any difficulties Daisy overstaying her welcome may have caused to their bed management plans. In fact the nurse assigned to Daisy that evening had remembered her from before and even had an "In the Night Garden" DVD all primed and ready for her!

Daisy's cannula only lasted a few hours and she had to be recannulated at GOS, then overnight she detatched herself from her IV line and lost a considerable amount of blood, this meant that she needed yet another blood transfusion in the morning, delaying surgery for the new line even further. During the course of the day she spike a temperature and developed an odd rash and my heart was in my mouth that she had become septic again. She went to theatre at 8pm and came back with a lovely new hickman line which the surgeon has promised he has done every trick in the book to prevent infection - well we'll ask for him specifically if it does get infected!

We came back to Queen Mary's on Sunday and by Monday Daisy had really picked up, her blood cultures were confirmed as clear and she is now up to 3 clear MRSA swabs at Queen Marys and 2 clear swabs at GOS - still not enough to get us out of the room however, the concerns now more are for her infection risk as her immunity is so compromised.

Daisy had a lovely day today, she slept well last night - probably a combination of antihistamine for her rash (which is now disappearing and appears to just be another odd Daisy thing), calpol and melatonin. A good night's sleep is a real rarity for Daisy - she hardly ever gets restful sleep and wakes in pain a lot at night so it is lovely when she does sleep well. She has been really happy all day and I have asked the doctors to consider whether we could try and restart a tiny amount of feed again. Of course this has to be run by a huge team both here and at GOS so I will wait for them all to come to a consensus. My gut instinct (no pun intended) is to try and restart the feed while she is so well as she has not been this well in a while.

Of course part of me can't help wondering how long it will last, over the next couple of days we will restart IV steroids and start the big league immunosuppressant therapy, cyclosporin, to try and calm down the autoimmune reaction in her gastrointestinal tract. Once she has been on this therapy for 6 weeks she will return to GOS for her upper and lower endoscopy and at that point we will have a better idea of when we might get home. In the meantime, I am teaching Daisy to click her heels together three times and say "there's no place like home, there's no place like home...."
Given the space between this post and the last one you will probably guess that things have moved on. Daisy eventually got her port taken out and new temporary picc line put in. She went to theatre last Wednesday evening at 8.30pm and the surgeons took the port out (leaving yet another scar) and put a temporary femoral line into her groin (stitched in to add insult to injury!). Our warders (aka nurses) at GOS thought that this would all be fine despite consultants both at GOS and at our home hospital insisting that a femoral line was only a temporary measure (they are not meant for long term use and come out easily) and was just to tide her over until the picc line could be put in, hopefully within the next couple of days. Once again the issue of bed management and Daisy overstaying her welcome reared its head on Rainforest ward.

Sadly, the system they have in place of booking complex children in for minor procedures on short stay beds is not working in Daisy's case - every single time this has been tried Daisy has needed the bed for longer than the allocated 3 days. It may come as a suprise to many of you to learn that God's Own Special Hospital (as Great Ormond Street is known in the trade) doesn't cope well with children who do not do things according to plan - actually I'm being unfair, it seems to just be Rainforest ward....Our situation last week was that nurses were trying to ship Daisy back to the local ward with an unsafe line against the recommendations of her consultant just to free up the bed space. This was very obvious when I saw Daisy's file open on the nurses station outside her room, there was a note on the front stating she was in for a procedure on Monday, if well enough to be discharged back to local on Tuesday and (in capital letters) must leave ward on Wednesday. It's a sorry state of affairs when the bed managers have precedence over clinicians....

Anyway, clearly Daisy was not going to be shipped back to her local with an unsafe line - the local doctors would not accept her back, her gastro consultant at GOS was furious that it had even been suggested and I completely threw my toys out of the pram! I told the nurses that the bed issue was not my problem and to stop treating my daughter once again as an inconvenience, I tried to slam the door of her cubicle, forgetting that it was on a self closer and so the drama was lost a bit as the door slowly closed shut. Our GOS consultant had made himself even more unpopular with the bed managers for Daisy's sake and then had moved heaven and earth to get her a theatre slot with the interventional radiology team later on Thursday to have the picc line fitted. His registrar told me that he had even taken on some of another consultants cases just so they could fit her in, I am so grateful to him for that.

So by Friday morning Daisy was good to go - only I did have to remind the nurses that Daisy would need TPN over the weekend and had they contacted the local pharmacy with her prescription (of course they hadn't!). We had to be blue lighted back to Queen Mary's as there was only enough dextrose provided for an hours journey and south London on Friday rush hour was certainly going to take longer than an hour!

Daisy's temperature came down as soon as the infected port came out and the plan is to continue all the horrible antibiotic and antifungal infusions for a week so today is the last day. Blood cultures were done yesterday and I am keeping everything crossed they are negative, meaning that the bugs in her blood stream are gone. She also had another MRSA swab done in GOS and that was negative too - of course this being the NHS 2 Queeen mary's negative swabs and 1 GOS negative swab do not add up to 3 negative swabs, each hospital likes to have their own set, so Queen Mary's swab 3 is currently being processed, if it is negative for MRSA it means that Daisy will be able to leave her cubicle. This will be so fantastic as she will be able to visit the playroom, obviously being immunosuppressed this can't be when other children are there but the Play specialist has said she can have "Daisy time" in the playroom each day...

The next stage had been to restart the steroid treatment and start on infusions of a new, stronger immunosuppressant drug, I use the past tense because as always the proverbial spanners have been thrown into the works. Both Andy and I noticed independently that Daisy was looking a bit jaundiced, her blood results today confirmed that there is a problem with her liver, probably due to the TPN and the fact that she is not being fed into her tummy. An ultrasound showed her bile duct was full of sludge, she has been vomiting lots of bile and is in a lot of discomfort at night so this is probably the cause. The docs here are speaking to the docs at GOS and tomorrow she may start on yet another medicine to try and put this right. She really needs to be fed into her tummy to stop this sort of thing happening, but it just does not work properly, not only does she have the massive inflammation, her stomach does not empty properly and her gut does not move as it should....the answer is, who knows????

So until her liver function stabilises once again we have to delay the treatment for her underlying condition and this all delays getting home at some point.

Still, it could be worse, we could be stuck in Rainforest, at least this way we are in a hospital only 10 minutes drive from our home with staff who know and love her and don't treat her as a bed blocker!
Day two comes to an end at Great Ormond Street and Daisy still has an infected line in place......grrrrrrr! The fine balance of operating theatre lists and the availability of specialist teams was thrown by Daisy needing an urgent blood transfusion yesterday and this has thrown everything out of kilter. As predicted we had the night from hell with Daisy - a combination of late meds, transfusion, being clinically unwell and nurses who do not know Daisy as well as our local nurses meant that both she and I are a bit sleep deprived at the moment. The interventional radiology team who are the experts in putting in lines had a full list today so the plan had been for the surgeons to take out Daisy's infected line and for an interventional radiologist to come in to place the new one. This all had to be done on the emergency surgical list and as Daisy is still classed as MRSA positive she would have to be done at the end of the list. Problem is with emergency lists its difficult to plan timings and with the surgeons running late it meant that the Interventional Radiologists had finished their shift and gone off duty. Daisy's consultant was not happy with a surgeon placing the new line in a late night theatre slot as there were too many risks both as she is difficult to access and with her anaesthetic risks. So now we are on to plan C - tomorrow the surgeons are going to take the line out and a very temporary femoral line will be placed in her groin (ouch!) - the reason for this is that the infamous Interventional Radiology team are not available tomorrow (at this point I start chanting my mantra about why doesn't the NHS get its head around the fact that people are ill 24/7 and not 9-5 and weekdays only...). This will mean that she will then need another anaesthetic in a few days to place a more permanent line.......even I am losing the plot at this point.

The bottom line is that as per usual Daisy will be outstaying her welcome on Rainforest ward, we will probably lose our bed back at the local and Andy and I will have to do some rapid juggling to work out domestic arrangements, which includes getting Theo a warm jacket for his first Scout Camp of the season on Saturday and getting Jules and Xanthe to their siblings day at Chase on the same day. Being superhuman we will of course achieve this and hopefully still smile at the miserable ward sister on Rainforest who will hate us for throwing her bed management arrangements yet again! Good news is that the big cheese Gastroenterologist Daisy is under is coming to see her tomorrow - he tends to be able to get things done and I am pinning my hopes on him having a good plan for how we can move forward. In the meantime I am going to nip out and treat myself to some throat lozenges for my sore throat, a "tasty" norma-no-mates microwave meal and a small screw top bottle of red wine - after all, tomorrow is another day...........(we just have to get through another night)
At long last we are back at Great Ormond Street - never thought I'd say those words but the worry of the infected line was becoming overwhelming - however we are not out of the woods quite yet. Daisy has a lovely upper respiratory infection and has been vomiting and coughing for the past few nights, she has had a temperature for eight days, due to the new line infection and is not well at all. Inspite of all of this the anaesthetist was happy to go ahead as the risk of the infected line outweighed the other anaesthetic risks. However Daisy being Daisy decided to throw yet another one of her spanners into the works - her haemoglobin level has dropped dangerously low and that risk now outweighs the line removal as it is too risky to do while she is so anaemic. So as I type she is just coming to the end of another blood transfusion, the second in about 3 weeks. She is a lot better for it and this will probably help her cope well with tomorrow's procedure - now assuming that they can fit her in on the morning list as promised....

We are all behind with her drug infusions and TPN tonight so I am gearing up for yet another disturbed night as infusions go on and off and TPN gets put up at some unearthly hour. Her blood sugars have been all over the place too - to get her through the transfusion she was given a glucagon injection at the start, in any other child this would have sent their sugars up to the roof but for Daisy it just pushed them into an acceptable range. Her endocrinologist is going to come and see her tomorrow (assuming she is not in theatre at the time) to discuss restarting her growth hormone therapy which should help her regulate her blood sugars and hopefully give her more muscle strength to cope with all of these infections.

I heard an ad on the radio the other day about giving blood and that blood banks are currently low on type O blood, Daisy's blood type. Each time Daisy has a transfusion I do say a mental thank you to the kind soul who gave up an hour of their time just for the promise of a free cup of tea and a biscuit to donate some blood, suddenly those radio ads seem so much more poignant, Daisy needed blood and it was there for her and looking at her colour tonight it makes the world of difference...
Still have not downloaded those Christmas pics - must try harder.......I'll get on the case this weekend.

New Year for Andy and I started with a bit of a hangover and hoarse voices from singing karaoke at our neighbour's house, the best therapy we needed was to belt out some Abba numbers at the top of our voices until the early hours! Daisy's new year started with a snotty cold, but she was happy enough without a temperature, just an annoying cough until last Sunday when she suddenly spiked a 40 degree fever. Previous blood cultures taken just before new year had been negative so the docs felt that it was probably just a virus, an x ray showed a bit of phlegm on her chest and they took some more blood just in case. Her temperature has stayed up for the past few days and although the ward doctors kept saying it's probably just a virus my instincts were, as always, to prove me right. Yesterday afternoon the microbiologists (who are very au fait with Daisy's various bodily fluids) phoned to say that the first culture was positive for candida and the second culture was also growing something. I was dreading a return of the MRSA nemesis but it was it's marginally less scary cousin enterococcus. A quick call to Andy to update him, he googled candida sepsis and we have now realised that this is our new nemesis. Don't google it, you'll scare yourself! Daisy's port has to come out! This is where Great Ormond Street for the first time ever have come good. With impeccable timing I had a call from Rainforest ward to inform me that her port would be removed on Monday, in fact I have never known such a flow of communication between our ward here and Rainforest, they must have made a New Year's resolution to be more proactive!


The doctors here have tried to get her in earlier as she is not well at all - her temperature remains high and she is not a happy bunny. It does look like Monday is the soonest it can be done and I don't want her transferred to St Georges for the line removal as this adds another hospital into the equation and a set of anaesthetists who do not know her well (she can keep anaesthetists on their toes by throwing little wobblies now and then). In the meantime she has been started on two anti fungal meds as well as her antibiotic infusions, it feels like she spends more time on medicine infusions than on her TPN - no wonder she feels grotty. Her vancomycin requirements are now officially those of a 70kg man and are probably contributing to the existing Epsom & St Helier Trust Budget Deficit.


Our nurse from The Children's Trust at Tadworth started working with Daisy this week. After a year of pushing by Andy and I we eventually got social services to fund some short term respite at Tadworth to give us a break occasionally. The initial agreement was 2 nights a month but of course as Daisy has been in hospital for so long she has not been able to access it. Fortunately the funding was moved to provide outreach so now we get 7 hours a week from a named nurse. It is so nice to know that I will get a day off one day a week - Jane our nurse will work alternate early shifts and late shifts so that one week I can get time off during the day to catch up on things at home and one week I can get an evening at home. My life at the moment is spent dropping Xanthe and Jules off to our neighbours to be taken to school and them coming to the hospital, staying here until about 5.30pm, picking the children up from after school club, feeding them and then returning to the hospital when Andy arrives home at 7pm and staying here until 10pm (ish) or whenever Daisy settles. On the weekend Andy and I try and juggle our time here between us. When Daisy is really poorly or staying in GOS I stay with her and Andy juggles things at home. The reality is Daisy cannot be left for long, she does not have one to one nursing at the hospital, there are other patients besides Daisy here after all!, and although the nurses keep an eye on her when I am not here they can't be with her all the time and Andy or I have to try and be with her as much as possible, both to keep her entertained and stimulated as she is still in isolation but also to do all the nappy changing/bathing & personal care she needs, and often to untangle her from all wires as she is so active! It makes me really cross that the government seems to thing that when a child with complex needs is in hospital they are being looked after and the carer is getting a break, if anything my job is more difficult as I am trying to be several places at once all the time and never quite managing it!

With the new year we have been focusing on trying to get home at some point. I keep saying to people that it will hopefully be by the summer, but it may even be around May half term time. When we are at GOS next week we hope to see the TPN nurses to get the ball rolling with getting set up for long term home TPN. The homecare team here is happy to set things up but it has to be done in collaboration with GOS as she is their patient. Knowing how slowly the NHS moves it will take a while to get the funding in place but hopefully we can start slowly by having some day release. I would love to be able to take Daisy to school for a few hours even if only once in a while. Daisy's key worker is setting up a multidisciplinary meeting with everyone who , is involved with her , from the school, doctors, therapies, social services - such a small girl, such a large entourage.....

In the meantime amid all these line infections and worries I thought we should all have something to look forward to so I have booked some more time at Chase. We have the weekend of Theo's birthday in February booked and I have also booked a week for the first week in August - the children are just over the moon at the thought of a summer holiday at Chase. It will give us the chance to have some family days out and have some quality time with Daisy without having to manage her care for a while, something lovely to look forward to later on the year while temperatures go sub zero outside and Daisy battles with another line infection while waiting for her port to be removed!
”related