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.
So, one minute I am blogging about taking each day and enjoying the moment , and the next minute I walk into the ward one morning to be told by the nurse looking after Daisy that she had spiked a 40.4 degree temperature and was unwell.........great, another white knuckle ride again.

Of course everyone who knows Daisy well knows this pattern, we plan something, in this case, Andy going for a weekend to France with one of the children or we have another inpatient stay at Great Ormond Street booked and you can guarantee that Daisy will throw a spanner in the works. Of course this week it was a double whammy, weekend plans and inpatient stay so Daisy threw a double infection - candida in her bloodstream (you will remember from previous posts this is bad, bad, bad!) and a really bad urine infection , and for good measure streptococcus was isolated in her gastrostomy site. The bottom line is the Hickman Line (no pun intended) will have to be removed, candida sticks and you do not want to risk it creating fungal balls which settle in the brain, heart, lungs, kidneys - as I said, this one is bad.

She is smiling and gorgeous as ever which really belies her state - the infection is systemic, ie everywhere and requiring big doses of anti-fungal infusions which have really nasty side effects. On top of that she is back on antibiotics for the urine infection. These drugs together with the steroids and immunosuppressants do not make for a good combinations so her kidneys and liver are being monitored constantly. The only good thing is that we are going into GOS tomorrow so hopefully they can fit in a line change then, if the ward doctors can get their act together, I'm just keeping everything crossed that the endoscopy and jejunostomy can still go ahead as without these two procedures we will not know if we can stop the immunosuppressants and try and increase her feeds to get her time off the TPN. And time off the TPN means we can become eligible for the HPN programme - Home TPN and maybe a plan and a timeframe for coming home....

So many things keep moving and changing, many not under our control, the stress is starting to get to us all. Thank goodness Andy had a chance to get away and recharge his batteries, I do not want to be away from Daisy so knowing that at least one of us is getting a break is a comfort. I am getting fed up of lots of things about our institutionalised life however and have started to compile a list, many of which will be familiar with friends who read this blog:-

In no particular order...

- having to ask permission to do things, eg like getting Daisy's growth hormone out of the fridge

-not being able to take my cup of tea into her room

-dragging a huge IV pole with me and holding 3 lines to make sure they do not go on the floor everywhere we go

-trying to keep 3 other children entertained while spending time with Daisy after school

-not being able to spend any time with Andy, particularly on the weekends when one or other of us is at the hospital and the other is at home with the 3 children

-having to leave Daisy at night

-not being able to have her home and to be together as a family

-living our lives in a goldfish bowl with no chance of any privacy

Anyway, whinge over. I am hoping that this week we may leave GOS with a bit of a plan and way forward. The longer Daisy is in hospital the more susceptible she is going to be to infections, but she cannot come out until she is stable. We have to go at her pace but at the same time I want the doctors to remember that she is a 4 year old girl with a life to live and she cannot continue to live it confined to a cubicle in hospital. If her life is going to be short then I want it to be full of memories of fun with her family at home....

Fingers crossed Daisy is continuing to do well, not of course without her little ups and downs, which once upon a time seemed such a major thing and are now just another thing...... Her recent cardiology appointment showed that her heart is enlarged and the mild cardiomyopathy she has always had has become a bit worse, probably as a result of the infections and medications. We are now looking at starting heart meds, this was inevitable at some point in Daisy's life so it will be just another thing to add to the melting pot. Before starting these however she will see a renal specialist to discuss her high blood pressure. Yes - you read it correctly, when you are a child and your bp is high you are referred to a kidney specialist....it's because of the kidney's role in managing some of the chemicals which play a part in how the heart functions - especially things like sodium and potassium levels in the blood stream.

We hope to fit this in during next week's Great Ormond Street stay. We are now officially in countdown for this stay, which regular readers of this blog will know that I am not looking forward too. While it will be great to get some more biopsies taken and also see whether the drug regime has helped with the massive gut inflammation and scarring, I just hate being on Rainforest Ward with Daisy. Our previous stays have been so depressing, not just because they have always involved bad news and emergencies, but also the staff seem to be so demotivated and the ward morale is just awful. I did phone Great Ormond Street today to check that they now had 3 clear MRSA swabs from Daisy's gastrostomy site - 3 clear swabs means she can leave her cubicle and take advantage of the play facilities available at GOS, and as we all know, 3 clear swabs from another hospital do not count. The good news is that all 3 of her last GOS swabs are now clear!!!! The bad news is that the last swab grew pseudomonas - another hard to eradicate bug. Isn't it great how they made sure Daisy's local hospital were informed of this (not!). She will be reswabbed at the local hospital tomorrow to see if she is still colonised with this bug. Being colonised is fine, in a person with a normal immune response, but in Daisy's case, as with the MRSA, if these bugs get into her blood stream it could be fatal. Life once again is like a game of Russian Roulette.....

I am still pushing to get sign off to be able to reset and manage Daisy's hospital TPN pump - this would mean that we could leave the hospital for a couple of hours without a nurse. I could take her to school for a few hours, or down to our hospice or even home.....The problem is this has never been done before so all sorts of risk assessments and disclaimers have to be worked out, I'm going to keep pushing for this as Daisy needs to be in school occasionally, she needs the social interaction and she especially needs the access to the specialist facilities her school offers (it is a specialist school for children with vision impairments).

Last Friday the ward did a fundraiser for Comic Relief Red Nose Day, Daisy and I had the best day. The nurses made her a cute T shirt and she dressed up in Mini Mouse ears, a ballet tutu and wings. We love watching the Comic Relief on TV and again I was struck by how fortunate Daisy is in the lottery of life. Had she been born in the third world there is no way she would be alive today, I know I knock the NHS sometimes but I am so grateful for the fantastic free treatment we get. Our hospital is only 12 minutes drive away and then we have access to many world class facilities in specialist hospitals in London..... anyway, watching Comic Relief made me realise, sometimes I get down about things but the bigger picture is that Daisy has truly enriched our lives, and changed them. I found this quote the other day that sums up how Daisy has taught us to cherish the little things and live for the moment;

One day at a time- this is enough. Do not look back and grieve over the past, for it is gone; and do not be troubled about the future, for it has not yet come. Live in the present, and make it so beautiful that it will be worth remembering
(Ida Scott Taylor)

Yesterday we had a beautiful thirty minutes when Daisy was allowed off her TPN and was just attached to her enteral pump - we walked a circuit around the hospital as a family. This was the best thing ever, enjoying an early spring evening with my husband and all four children - a beautiful moment to keep us going through the tough times.