Daisy is Home!!!!!!!






Daisy is Home!!!!!!!!!!!



Obviously, given the time which has elapsed between this and the last post you can guess there were a few hitches along the way! We had been working towards coming home on Thursday 16th July and Andy and I had completed our TPN training and had done our first "live" connections and disconnections on Daisy. Very daunting as it really goes against your instinct as a parent to connect your child to a bag of fluids which while keeping her alive could also kill her if you get it wrong. Still, we did it and were all set to come home when out of the blue on Tuesday night she lost the ability to move her legs and was screaming in agony. Now I know that this blog is called "is this in the plan" but recently I have seriously thought about renaming it " well, we didn't see that one coming...."





There are times when I am so grateful that Daisy is already in Great Ormond Street Hospital, and last Tuesday night was certainly one of them as we had top doctors and nurse practitioners gathered around her cot scratching their heads and wondering what had happened to suddenly cause this acute episode. An ultrasound of Daisy's hips revealed she had fluid on both of them, so instead of going home we made yet another trip to theatre and the MRI suite to have her hips looked at and the fluid drained from them. Over the course of the weekend it was apparent that the only thing now keeping us in hospital was the 4 times a day doses of two different antibiotics to treat the infection in her hips....Andy and I were clearly competent in connecting and disconnecting TPN, taking blood, changing dressings, adding spec sets and changing smart sites, drawing up jejunal and gastrostomy meds and connecting enteral giving sets...we were more than happy to take her home on iv antibiotics. Cue visits from a few more hospital teams - infectious diseases, the unfortunate name of the team that look at children that have lots of infections (like Daisy)..Irony of ironies, the doctors from the infectious diseases team was the locum doctor who treated her in February when she nearly died of a line infection, the very man who phoned me at midnight and was treated to the spectacle of me in my Primark Leisure wear! He of course remembered Daisy, as anyone who ever meets her never forgets her, and ordered quite a few immunology tests. Although all of Daisy's recent infections have been from her hickman line, in common with many gastro children she also has a problem of translocation where the bacteria which normally sit in the gut move into the bloodstream, and being immunosuppressed to control her inflammatory bowel disease this is a major problem for Daisy.


We also met the lovely Dr from the Orthopaedic team (Xanthe insists he looks like Gary Lineker but in my myopic state I am reminded of a young George Clooney on ER). Daisy has been under the Orthopaedic Team at our local hospital for a long while now but this new change in events coupled with Daisy's need for Ankle supports and extra tight achilles tendons means that she is well and truly on the radar of this team now and will definitely need botox injections into her achilles tendons, probably surgery to lengthen her tendons and constant monitoring of her hips to make sure the fluid and inflammation does not come back.


Anyway, to cut a long story short, the fluid was drained from Daisy's hips, the physio's got her walking again, we were able to stop the IV antibiotics and around 3pm on Thursday 23rd July, almost exactly 10 months since she first went into hospital our daughter, Daisy Rose came home and our family became complete again......


I could blog about how wonderful the past 24 hours has been doing normal things like pottering around the house, going to the supermarket, cuddling up on the sofa, but the pictures speak for themselves. Needless to say it is difficult, even before this change our lives were diffficult as Daisy had considerable medical needs. These have now gone through the roof in terms of what we have to do and how we have had to adapt our lives but it means that our daughter is home with her brothers and sister and our family at long last is complete again!!!!!


I cannot finish this post without thanking and acknowledging the family and friends who have helped us on the rollercoaster - the secret gardeners who transformed our front drive, the ironing mother and mother-in-law, the friends who took children in at the very last minute, the people who texted, sent messages, called, sent cards, the nurses, doctors, health professionals.... - you all know who you are and we thank you from the bottom of our hearts, we could not have got through these times without you! Anyway, as Andy says, onwards and upwards, here's to the next chapter in our lives with our beautiful children......don't worry, I'll keep blogging, just want to smell the roses for a while......












Yes - we're still in Great Ormond Street but hopefully the end of our hospital life is in sight as we have another possible date for release (prison analogies are so relevant) but I'm not naming it as I just don't want to jinx anything!

Our lives were brightened up by the recent visit of the the lovely Johnny Depp - I still can't believe it was really him (it definitely was) - and also a visit by Dr Linden Cullen from Holby City (or rather the actor who plays him!). Daisy was also well and fit enough to really enjoy some of the benefits of the hospital school including a cookery lesson with a West End Chef where she made delicious blueberry muffins and a strawberry tart, she also had a private music lesson with two musicians form the City of London Symphonia and has been a regular at the truly fantastic Singing Hands sessions. Doesn't this all sound like a holiday camp! Well believe me it's not, these little interludes just help us get through the rubbish bits which recently have included taking a good 24 hours to recover properly following a "short acting" anaesthetic for an upper and lower endoscopy, the trauma of having to have a canula to decrease the risk of her hickman line being infected during the endoscopy, being stuck on 24 hour fluids while trying once again to build up her milk feeds, constant "BM" checks to make sure her blood sugar is stable and vomiting meds from her jejunostomy (this shouldn't happen because this is not even her stomach).

Anyway - that is all behind us, Daisy appears to be relatively stable now, everyone is happy that she will only have 15 mls an hour feed going into her tummy and this is only to maintain her blood sugar, not to provide any useful nutrition, added to this a special carbohydrate powder giving her 20% carbohydrates in this 15mls or 3 teaspoons, specifically to prevent the hypoglycaemia. The growth hormone therapy, while not achieving the metabolic stability we had hoped for (growth hormone has a role to play in helping regulate blood sugar) has at least enabled Daisy to grow to the point that she can now wear a small backpack and carry her feedpump around with her for the 10 hours a day when she is not on TPN - this is absolutely fantastic as it means she is independent for the first time since she learned to walk and can now make decisions about where she wants to go. Today she ran up to Andy and gave him a hug when he walked into the room - this is the first time she has been able to do this without having to wait for someone to move her pump. Daisy has also been getting some physiotherapy at last and now wears splints on her legs and feet to attempt to stretch her achilles tendons which are now so tight that without them she does a fair impression of Darcy Bussell on pointes. The likelihood is that the next stage will be botox injections and casting to try and stretch her achilles so that she can walk with flat feet without her splints and longer term possibly tendon lengthening surgery. All this is fairly common in Costello Syndrome, but as her consultant says having the Costello Syndrome on its own or the Gastro problem on its own would be bad enough, but both together is a real double whammy as she just has to battle with so many issues. Which in true Daisy form she does with a huge smile on her face and massive determination.

TPN training had been put on hold with all of the setbacks but now it is completely back on track and the big day for Andy and I is Monday when we will be watched by all three Nutrition nurses doing a dummy run through of a connection and disconnection of TPN in preparation for doing a "live" connection on Daisy. Just to add to the pressure one of the nurses popped her head around the door this afternoon to remind me that if either of us did anything wrong we would not be able to do a live connection and Daisy's discharge would be delayed. This is worse than any test or exam either of us have ever had to do as so much is at stake - essentially our daughter's life. If we make a mistake when putting up the TPN we could cause a fatal line infection or air embolism which could kill her - the fact that Daisy has already had so many touch and go line infections makes us fully appreciate what a major deal going home on TPN is, you cannot cut corners and you cannot have any lapses in concentration when doing it as it really is a matter of life and death.........

After 10 months going home is really daunting, we have been so used to having nurses and doctors around if we have any concerns, now we will have to dial 999 if we have any worries - the days of me piling Daisy into the car to go to the hospital while Andy stays at home with the children are gone, it's a good thing Daisy is used to ambulances as this will be the emergency transport if she spikes a temperature as it probably is a line infection and we cannot risk her deteriorating on a car journey...

So now the end is in sight the next thing we are having to contend with is the worry of Swine Flu - blimey there's always something isn't there? We can't wrap her up in cotton wool, so we just need to be aware, the plan is that if she has know contact with Swine Flu we have to start Tamiflu immediately, hopefully this will nip it in the bud as the last place she will need to be is hospital - apparantly Queen Mary's is full of Swine Flu cases at the moment so I don't think we will be making any social visits when we get out of hospital!

My plan for the weekend is to swot up on my TPN drill , I know from talking to other home TPN parents here that it will become second nature once we get her home but at the moment, like learning to drive, I am having to think through each move. I also want to go to Patisserie Valerie and order a massive cake with "Welcome Home Daisy" to take home with us, there's a bottle of Bollinger in the fridge waiting at home although I doubt if Andy and will be drinking it, we'll be tossing a coin for who does the first home TPN connection......

When Johnny met Daisy





an unexpected visit from Johnny Depp dressed as Captain Jack Sparrow.....he has strong links with the hospital after they saved his daughter's life a couple of years ago. Obviously he was very taken with the lovely Daisy, particularly when she blew kisses at him although when he walked through the door she signed "where's Peppa Pig?"...
More blog news to follow tomorrow - home for a few hours to unpack the delivery of all the equipment we need to manage TPN at home...

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