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!

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