I was affected in a way greater than I realised at the time by the news of David Cameron's son's death this week. Here were two parents given every privelege in life but still facing the struggles Andy and I face week in week out. The frantic dashes to hospital, the endless hospital appointments, the meds, the waiting for results, the hope, the worry...... and for them to leave hospital for one last time without their precious son. I thought back to our worrying time with Daisy a few weeks back and how it could have been the same. The reality is that illness and disability does not discriminate .... so many families like ours face the same challenges week in week out, and yet we manage to get on with life and keep our heads above water. Following Ivan's passing there were lots of interviews with parents of disabled children on the TV and in the papers, over and over the same answers came out - how do you cope? - because there is no other choice, you have to - whether you are the leader of the opposition, the Prime Minister (who himself lives each day with the memory of his first child who died prematurely and the challenges faced by his youngest child who has cystic fibrosis) or whether you are Steph & Andy Nimmo of Wimbledon. Andy goes to work , I go to the hospital, we get on with things, and colleagues, friends, family don't really know what we are facing day by day - apart from that small group of friends we now have who are also facing their own challenges with their own child. In so many ways I feel blessed to have Daisy, suddenly the spotlight was on families of children with disabilities last week and I felt that I was a member of a very special club who could really understand and empathise with the Camerons because there but for the grace of God...........................



We have had our usual share of ups and downs with Daisy since my last post. We were very excited to get her enteral feeding to 28mls an hour, however as always my daughter does not do things by the book and this includes showing us whether or not she is tolerating her feeds. After lulling us into a false sense of security for a week or so, she started to vomit and her tummy bloated up. Hoping that it was just a tummy bug picked up as a result of being able to leave her room, we waited for test results - all of which came back negative for every bug that she may have caught. So we pushed her feed volume back down to 21mls an hour again and have gone back to the drawing board. She seems to be tolerating the lower volume much better confirming that her stomach does not work properly and that she would benefit from jejenal feeding, bypassing her stomach altogether and feeding her directly into the top of her intestine. The procedure to create this new opening will be done at the end of March when she goes back to Rainforest ward at GOS. At the same time she will have an upper and lower endoscopy and we will know if the drug treatments she has been on have worked. I'm really hoping that we will start to make some plans for coming home as well. It will take such a long time to get everything in place that I want the planning to start now otherwise we are in real danger of hitting the summer holidays with Daisy still in hospital.

We were supposed to go to Chase this weekend for our re-booked respite following Daisy's near fatal infection a month ago. This time it was Xanthe's birthday and for the second time I had to meet the children from school and tell them that our break to Chase had been cancelled. This time it was cancelled because there were two emergency admissions for end of life care. Ultimately this is what Chase is all about, we may be in that situation one day so I really did not mind us being cancelled, I'm just focussing on the the next GOS visit. To make things up to Xanthe I rapidly organised a birthday party for her and while Andy sat with Daisy, Jules played at a friend's house and Theo plodded on with his homework I had a nice girly afternoon with Xanthe and her friends at the cinema. Chase has been rebooked for April so I'm really hoping we can actually make it, Christmas seems such a long time ago and we are in dire need of some family time together, the children are fed up of having to be dragged up to the hospital and I'm fed up of trying to divide myself into a million pieces for everyone. Sometimes I just wish I could just wave a magic wand and this would all be over and Daisy would be pottering around the house again just like she used to.......
Given the time elapsed between this post and the last one you would be right in guessing we have just had half term (let the juggling commence!). As always the complete lack of strategic planning on our behalf (suprising when you bear in mind we both have - or in my case, had, roles involving strategic planning) meant that Andy had not booked any holiday and I was very light on respite time (of course everyone wants respite during half term). Anyway, Grandma (my mother - think the Jennifer Saunders character in abfab with a welsh accent) came to the rescue and had Theo to stay for a week which included attending a Blues Brothers tribute night (he fell asleep at the table!), sitting in a Ferrari - he's moved his obsession from Dr Who to Top Gear and viewing 1,600 videos on You Tube! Xanthe had two sleepovers and a day with a friend - all of which involved experimenting with copious amounts of make up.

Jules made it through half a day at the holiday club before nearly knocking himslef unconcious on a radiator while diving for a football. Having spent considerable time in hospital now I know that the fact that he cried straight away was a good sign and hopefully no permanent damage has been done. It is however difficult to tell the difference between genuine delirium and just stream of conciousness with Jules , although I'm opting for the latter.

In massive contrast to my last post, Daisy has had a fantastic week. We have been able to push her milk volume up more and more (this is the feed she receives via her gastrostomy button directly into her tummy). She remains on 24 hour TPN with some gastrostomy feeds. This in itself is a massive breakthrough. She is still on her nuclear strength antibiotics, and, although I hate her being on them I have to admit that the IV immunosuppressants and steroids seem to be doing the trick - I hope. Her latest blood cultures are negative which is great as hopefully she has cleared those nasty bugs from her bloodstream. I say hopefully as the problem is no-one wants to give the nod to take her off the antibiotics. The pattern seems to be with Daisy is for a week or so without antibiotics before another infection kicks in. This was the case over the summer before her hospitalisation so it's not even since having a Hickman line. Her main consultant is back tomorrow (having also had to juggle her childcare arrangements last week, it's why we get on so well, in many ways we share similar worries!) and the consultant microbiologist wants to brainstorm a plan with her. I feel I need to send this consultant microbiologist a picture of Daisy, he has received so many samples of bodily fluid from her over the past few years and has never met her, but he, like so many of Daisy's team, is caught up in her life.

Daisy feeling better and stronger brings its own challenges, she is no longer content just to lie in bed and watch Cbeebies, she wants to get up and be busy. Just like the rest of my children she is not a fan of daytime naps so the days are long. I am her teacher, physiotherapist, speech therapist, vision teacher, interpreter, nurse (for some things!) as well as her mummy. I am waiting for the powers to be to sort out the bureaucracy so that I can just have one role of mummy but in the meantime, and in the interests of not losing any more time with her development, I do everyone's job (for no financial return other than a smile). The best thing is that we have been able to venture out of her cubicle. This is such a milestone and for Daisy is like discovering a whole new world. We have visited the nursing station, looked at the children in the bays, taken in the parents room , checked out the doctor's office and most exciting of all, been to the playroom!!!!! Of course now she wants so spend all day out and about on the ward, with someone behind her wheeling her IV pole loaded with TPN, enteral feed, syring driver and someone next to her holding her hand as she is so unsteady on her feed (did I mention that ontop of everything she has a problem with her vestibular/balance function?).

Being immunosuppressed means that Princess Daisy cannot always have her wish, particularly as the ward is currently full of cases of diarhea and vomiting. So the onus is on me to be children's entertainer again. This is proving somewhat difficult as the TV in her room is once again stuck on Channel 5 and I'm not sure that the storylines in Hollyoaks are quite a suitable replacement for "In the Night Garden" on Cbeebies.....

A close call

This post so very nearly could have been the worst one I ever had to post, as it was, it has taken me a while to think back over what happened last week and how close we were to losing Daisy...

The beginning of the week had been lovely, the snow had really brightened everyone's spirits and Daisy enjoyed looking at (if not touching) the bowl of snow the nurses brought in for her. We had a great time with all the children together on Tuesday as Andy managed to get into work and I spent the day together with all four children in Daisy's room which was suprisingly manageable. On Thursday Daisy was quite clingy and pale and I kept meaning to ask the doctors what her haemoglobin level was as I wondered if she was at the point of needing another transfusion. I thought if it was the case it would give her a boost ready for our weekend at Chase Hospice.

It was Jules who discovered she had spiked a bit of a temperature. I brought him and Xanthe to the hospital straight after school and he was taking our temperatures and playing around with the stethoscope (as you do when you have spend the best part of your life since the age of 2 entertaining yourself in your sister's hospital room). We gave her some calpol and when I came back later in the evening she was sleeping peacefully but still a bit hot, after more calpol the temp came down a bit and as it was 11pm and I hadn't packed a thing for our trip to Chase I went home.

Within half an hour of my head hitting the pillow the phone went, thank goodness Daisy's consultant was on call that night as a locum registrar was covering the ward. Daisy's temp had gone through the roof (40.5) and her blood pressure had dropped suddenly. She had been given a saline fluid bolus to restore her blood pressure and started on 2 of her usual antibiotics and an antifungal to cover all bases before the blood cultures came back. I rushed up to the hospital (greatful for my recent investment in Primark leisure wear which meant I did not have to change) to find her fast asleep and the room like a fridge to keep her temperature down. She slept quite well that night and by the morning just looked completely washed out.


I was still half hopeful that this was just another Daisy blip and we would be allowed to go to Chase. If Daisy was our only child then it would have been easy to cancel but it was the thought of letting the other 3 children down who were so desparate to spend some time together as a family and not have part time parents/siblings. However I knew things were serious when Daisy's consultant arrived and said she was worried about Daisy. I know as a mum of 3 herself she would be the first to ensure we had quality family time together, so if she was vetoing Chase we know it was bad.

I called Andy to ask him to get home early as the children would be disappointed and left Daisy at 3pm to collect them from school and tell them the bad news that we would not be going to Chase. Daisy was not well at all at 3pm and I really did not want to leave her but this was again my usual scenario of leave Daisy to deal with my other children or make frantic arrangements with very accomodating school-run mums to pick them up until I could get to them. Andy and I decided that this time we would break our rule of trying to be as open and honest about the situation with Daisy as possible and tell a white lie as to why Chase was cancelled. The children are still indignant that the staff at the Hospice could not get themselves organised to dig their way out of the snow (one day I will tell them!) - we did not want them to resent Daisy for scuppering yet another weekend although without Daisy they would not have been going to Chase in the first place (I guess without Daisy they would not even experience the number of ruined weekends however....).

By the time I returned to the hospital Daisy had deteriorated really rapidly - she was shaking with rigor, her extremities were freezing and her bp had gone through her boots again. Two consultants were on the ward discussing a plan for her and nurses and registrars were in and out of her room - I took one look and phoned Andy to get to the hospital straight away.

Daisy has had lots of tricky situations in her life but this is the first time ever I have looked at her and thought she was not going to make it - I have never seen her deteriorate so quickly and be so close to death. The doctors were trying fluid boluses to bring her BP back up but this was not working, she was shutting down, overcome with septic shock. An anaesthetist was bleeped to intubate her and the search began for a PICU bed. Of course to add to this it was Friday night and snowing, roads were in chaos and major motorways closed (as always happens when this country has extremes of weather) . There was no bed at GOS, Daisy's main specialist hospital, at one point Manchester was mentioned - good in that there is a specialist in her syndrome there, not so good in that it would have been a 4 hour trip in atrocious conditions. Eventually a bed was found in St Georges, 10mins by blue light down the road. Daisy was deteriorating rapidly and dopamine infusion was started, and, when the paediatric intensive care transfer team arrived, noradrenaline. This seemed to do the trick and suddenly she turned the corner and we dared to breath a tiny sigh of relief. It was decided she did not need to be intubated and she was blue lighted to St Georges PICU, even managing a smile as she was wheeled on the stretcher out of the ward.

In the same way she goes downhill, Daisy bounces back very quickly. We were really worried that the infection was in her Hickman line and it would have to be taken out even though it was only put in two weeks ago. However she responded well in PICU and the bug was found to be one from her gut that had leaked into her bloodstream and overwhelmed her body. We have subsequently found out that if it had got into her lungs death was a 100% certainty, as it was we had been dealing with only 50% odds of survival. And once again the girl with 9 lives beat the odds, but the cost to Andy and I was considerably more grey hairs and worry lines.

So Daisy is back in Queen Mary's now, having charmed the team at St Georges, and back on lots of horrible antibiotic infusions which have toxic side effects which I try not to think about. She is amazing however - anyone else who had cheated death like she had would still be lying in bed, weak and feeble, but she has lots of living to do and is raring to go. She is back on feeds into her gastrostomy and as of today is on the momentous rate of 6mls an hour. In fact during all of last weeks problems the one thing to keep working was her tummy (albeit with only 3mls an hour going it), so Andy and I are taking some comfort that this may be improving.

We have been quite shell shocked since last weeks events, at the time you are carried along with the adrenaline of the situation, and on reflection wonder if it is only the fact that your love as parents makes you think that the worst could happen. However reality set in when each of the doctors who had been involved in rescusitating Daisy told me how close a call it had been and that they had thought she might not make it...........

We are so determined to get on with things now and get Daisy home at some point this year. We now have a date to go back to GOS at the end of March for another scope to see if the damage to her gut is improving and in the meantime we can try and push the gastrostomy feeds to help her system work and allow her the possibility at some stage of time off the TPN.

It's almost business as usual again now - this weeks problem remains high blood pressure and the plan now is for her to have a 24 ambulatory blood pressure cuff fitted to look into the pattern of her highs and lows, and then send her to a renal consultant at GOS to decide which drug to start her on to help manage it. She is also due her annual cardiac check up on her mild cardimyopathy and this is always preceded by a 24 hour ecg, so there will be at least a couple more nights of her being attached to extra monitors and tangled up in wires.

Now we know she is in hospital at least until the summer we have been able to get more permanent plans in place for Daisy's education provision. We held a multi-disciplinary meeting today to discuss her care - 18 people attended all involved in different areas of her life and this did not include all the medical doctors she sees. It is incredible the impact she has not just on our lives but on the lives of those involved in her care, this was so evident last week when we nearly lost her, so many people on the ward told me how worried and upset they had been and how relieved they were that she was alright, in four years Daisy has touched a lot of lives and while she is determined to keep us on our toes she is surrounded by the most fantastic team of people who just want her to win this battle and get on with life
I have decided that even if we gave Daisy sugar tablets she would have an unusual reaction to them (probably drop her sugar levels...), and so it is with her new drug cocktail - the potent combination of iv immunosuppressants and steroids. So this week's symptom I have had to become an expert on is (drum roll)......dangerously high blood pressure. In fact I have now become so obsessed with blood pressure readings and trying to find some sort of trend in why Daisy's bp has been going sky high that I have been taking the whole family's blood pressure (I am please to report that mine is in the very healthy range). So we have been tweaking the doses of meds and today following a conversation between Daisy's local consultant and her GOS consultant we have switched the steroids from IV to enteral (through her gastrostomy tube). Her bp has lowered a bit as a result but it may take a while for it to normalise (hopefully). We are also trying the achieve certain levels of the immunosuppressant drugs in her body in order to counter the out of control immune reaction in her gut (basically her body is attacking itself which is causing the massive inflammation and ulceration). Of course this being Daisy establishing these levels is not a test that our hospital microbiology lab performs day in day out, they run them twice a week so we all wait with bated breath the see if she is getting the right level of the drug to do the trick.... The word from GOS is that she needs to be on this therapy for 6 weeks before they can have a look at her insides again and see if it has done the trick.


All this means that inspite of now being absolutely clear of the MRSA (I promise that's the last time I mention it), Daisy remains confined to an isolation room for a while longer because of the risk of her picking up an infection. This is becoming increasingly difficult both for Daisy and for me - I am essentially Daisy's teacher, entertainer, carer and mother (replaced by Andy on the weekends) and sometimes I just go a bit stir crazy, particularly as prior to all of this I was working full time with a successful marketing career. Daisy is doing really well at the moment and, although she is physically very weak, needs more social interaction and opportunities to move around without the 4 tubes that are connected to her more or less permanently. There is a bit of light at the end of the tunnel in that we have re-started gastrostomy feeds - initially at 1ml an hour we now have pushed it up to 2mls and so far so good. Last time we tried this Daisy's tummy bloated up and she was vomiting and full of wind - after a full week on gastrostomy feeding she has been symptom free so this is a good sign. Fortunately the liver function problems she had previously seem to have reversed and she does not look jaundiced and is not pouring bile out of her tube.


I'm starting to get impatient (or in-patient) and wanting to get home but I know from bitter experience that if we push Daisy too much then we will undo all of the good work. At least this weekend (weather permitting) we'll get a little break as we are all going to Chase Hospice. Daisy will go by ambulance on Friday morning and I will follow on Friday evening with the rest of the children, closely followed later in the evening by Andy. I asked Jules what he was looking forward to doing at Chase, thinking he would say "playing Xbox all weekend" but his response was "hug Daisy all day and all night". This time has been so hard on them, Andy and I can at least talk to doctors, search the internet and focus on fighting Daisy's corner but all our other children get is an occassional visit with Daisy when she is up to it and to wait and wait for news on when she will come home. It's like being in limbo - we can't give them answers, all we say is that everyone is working really hard to make it possible and when she is ready and the doctors agree, then Daisy will come home.

Of course coming home will be so different - we have to get to a point where Daisy can tolerate 8 hours off her TPN, meaning that for 16 hours of the day she will be on it. This is not a straightforward thing, Andy and I will need to be trained beforehand and signed off by GOS and Daisy's bedroom will need to become more like a hospital room and less like a playroom. However we will do anything now to get her home and I know that Daisy will suprise us in time by becoming stronger and stronger and overcoming all these obstacles that life is throwing her. While this time is so trying, it's Daisy and her wonderful fighting spirit that is keeping all of us going....

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