Dressed as Peter Pan during the celebrations for Peter Pan week at Great Ormond Street

Beautiful raspberry pink casts, her nails have now been painted to match by big sister

Listening to a professional storyteller who visited the ward, she got 3 stories out of him and did not want him to go!

Before going into hospital, looking at a lovely gift sent to her with her big sister

Well guess where we are? Yes that’s right – still in hospital!!! In fact as I write we are on our home ward at Great Ormond Street Hospital – Rainforest. I always knew things would not be straightforward with Daisy’s orthopaedic surgery or TPN review, which was probably the reason why I had contacted our local hospital the week before to forewarn them of a possible transfer at the end of our booked week at GOS and also the reason why I had booked Daisy into the hospice for a few nights stay the following week. What I had not anticipated was Daisy being too unwell to actually leave GOS and needing a transfer to one of the high dependency beds on Rainforest!

The orthopaedic surgery itself went according to plan, a registrar drew two arrows on her legs so that the surgeons would know they were doing bilateral tendon lengthening and then he thought it would also be wise to draw arrows pointing to her ears so that the ENT surgeons would know where to put her grommets (hearing tubes) – I thought this was funny as it would be a bit worrying if an ENT surgeon did not know that grommets go in the ears. Annoyingly the arrows were drawn in indelible ink and Daisy spent the next week with them on her face and receiving puzzled looks from various medical staff..

She returned from theatre in her usual state – screaming and thrashing around. I always see other children in recovery sitting up taking things in but Daisy has a really bad response to anaesthetic and gets very upset afterwards. She had some respiratory distress for a couple of hours then flared up in a huge allergic rash requiring IV hydrocortisone – this is the second anaesthetic this has happened so the team are starting to get a bit twitchy about what to give her. She was clearly in some pain and we started her on IV paracetomol. The pain did not seem to come from her legs (which were now wrapped in lovely raspberry pink fibreglass casts) but from her tummy. As it worsened the night doctor started morphine into the mix. She transferred to the short stay ward the next day to start her TPN review and spent a morning in nuclear medicine having various tests and scans. By the afternoon the pain was getting worse and eventually she then spiked a 41.5degree fever and began vomiting copious amounts of bile indicating her tummy had shut down (we had only restarted minimal feeds anyway). We did blood cultures and started her antibiotic protocol assuming line infection. Her pain was becoming worse and worse and the pain management team decided to start her on a continuous ketamine infusion . To cut a long story short she needed the ketamine to be turned up more and more and she basically had 5 long nights without sleep and in considerable pain until it was controlled.

I was so please that she was transferred to Rainforest where she is so well known and where we could develop a plan for what to do next. Daisy’s pain at night has been increasing over the past few months and as you know we keep bouncing back and fore to A&E as she spikes temperatures requiring IV antibiotics. So far none of these episodes have been caused by a line infection and I was surprised that once again this was the case with this episode. This has left the doctors scratching their heads as they try and find out why Daisy is getting so many temperatures and why she is in so much pain at night. In a way it is good that she has done all of this here; for a start at our local there is no way that she could have received the level of pain relief offered here and she would have had to be retrieved to a more high dependency setting – wherever a bed was available which probably would not have been GOS. Also, we have been struggling to manage Daisy’s pain and these episodes of fever for a few months now and sometimes you feel like you’re a broken record telling the doctors about it. Without seeing it for themselves we have been told over and over it’s a UTI or winter bugs but thank goodness the doctors now can see the reality of what we have been telling them and agree there is a lot more going on.

The main decision is that an ileostomy is now absolutely essential,. No-one knows if it will work but at least the logic of reducing the length of passage of food in a very dismotile gut makes a lot of sense. So, having recently left a message for our surgeon saying we would like to go ahead but preferably at the end of our summer things are once again out of our control and the team here have been in touch with him to ask for it sooner rather than later....so much for the comment that the timing of the surgery was the one thing we had control over in my last post!.  This has sent me into a real quandary as once again timings and plans are taken out of our hands. Now I hope that we get the date within the next couple of weeks – this would mean that hopefully by mid June Daisy would be well enough to be transferred to our local and be closer to home, mainly for Jules’ holy communion day. Later in the month or the beginning of June and we are in the danger zone, not only for things planned in June (including Xanthe & my much planned and talked about once in a lifetime very special trip to the Glastonbury Festival…..don’t even get me started on that one…) but also that Daisy will still be very much in hospital by the time the children break up for the long summer holidays meaning another summer spent juggling their needs with Daisy being in hospital.

I know how much Theo was affected by Daisy being in hospital for the entire first year of his new High School and we are experiencing set backs from this again now. Xanthe starts her new High School in September and I just want to be there for her as she makes the transition from Primary to High School. In a way Xanthe is in a better position, being a typical girl she has a lovely group of friends who support her and who she can talk to, she also uses her creative talents in art and writing to express how she feels and at the end of the day she was only five when Daisy was born and can hardly remember a time when hospitals were not part of our lives. The boys find it harder to express themselves, Jules loves Daisy completely and utterly, he worries about her when she is not at home and he needs his family to be together and Theo, who is now a teenager, veers from mature and sensible to completely exasperating. For Andy and I it is difficult to know if his behaviour is just normal teenager stuff or his way of dealing with his worries – my guess is it’s half and half.
And Andy and I struggle to find time for eachother like so many other parents of chronically ill children. Having been made redundant last year, Andy is building a very successful business that needs all his time. We spread ourselves thinly but both appreciate the importance of making time for eachother. We still find time to have a laugh and find humour in our situation, we are so fortunate that we had a good, solid relationship to start off with but it has been tested over and over in the past few years.
My biggest worry is that we are not moving forwards. Simple orthopaedic surgery has set Daisy back, her walking ability is worsening, normally children in casts after this operation are walking within a few days. Two weeks in and she can just about find the strength the weight bear for a few seconds. The dependency on TPN is increasing and her ability to tolerate enteral feeds is decreasing. The one area where she continues to progress is in her cognitive development, she is as bright as a button and signs constantly and often supports her signs with clear words. She has clear likes and dislikes, understands everything and when she is not in pain is so happy and contented.
I just hope we get a date for this ileostomy surgery very soon so that we can give it a try and Andy and I can be trained on yet another aspect of her care….clearly we missed our calling when we opted for careers in business, we were obviously meant to be nurses…