Same old, same old - Daisy has infection, Daisy recovers from infection, gut becomes inflamed again, feeds not tolerated - and on and on and on we go.....next month it will be 10 months since we first were admitted to hospital........
Daisy is clear of the last line infection but her gut is clearly still inflamed so she will definitely have an endoscopy next week and I'm hoping they will be able to get some more biopsies this time to give us some more answers. She is still on IV antibiotics as they are all so twitchy about taking her off them and opening the floodgates for another infection. Her consultant came around today and he did refer to Daisy as a miracle child given all that she has been through, he said the plan is to get her stable enough to get home and then try and work towards - if at all possible- a cure.....yes he said cure so maybe he has something in mind??? One of the last resort treatments for Daisy's gut condition is a Bone Marrow Transplant, maybe he was thinking of that??? The problem is with us parents of chronically sick children, we hang on every word our consultants say looking for a little source of hope, they do not realise how much we churn over the conversations we have had with them, pinning our hopes on maybe just one word...
As always in the plate spinning world that is Daisy there is a problem, and this week it's back to her old problem of blood sugar regulation. One of the reasons she is on 24 hour iv fluids is that she cannot tolerate any time without sugar and we cannot get enough into her tummy to keep her blood sugar up. In fact if there is any delay in her IV being changed her blood sugars drop and she goes "hypo". Fortunately Daisy's endocrinologist also covers this ward so he will try and work out what we can do to try and maintain her blood sugars without this dependency on a constant supply of glucose into her bloodstream. The reason he had originally diagnosed for her problems was insufficient growth hormone, as this plays a role in blood sugar regulation. However Daisy has been having Growth Hormone injections for quite a while now and while she has grown to nearly 90cms the sugar regulation problem remains.
In herself she is really happy and enjoying the benefits of staying at GOS as it is so well geared up for long stay patients - she has a visit every day from a teacher who is actually able to use sign language, and she also goes to Singing Hands sessions and Music Sessions in the hospital school as well as spending time in the activity centre playing with other children. Then there are the visitors to the ward - neither Daisy or I are very enamoured with the Clown Doctors finding them deeply unfunny but we did enjoy a recent visit from the living legend that is Sir Terry Wogan.
So on we plod - Daisy has had a few tests this week, a video fluoroscopy which had to be abandoned as she refluxed up all the contrast fluid used to show up her gut, the outcome of which confirmed what we already knew, her tummy is now redundant and cannot be used at all. She also had a DMSA scan of her kidneys today to check for scarring following lots of urine infections as this may be the cause of her elevated blood pressure. We restarted feeds into her jejunostomy today, slowly, slowly as always at a rate of 5mls an hour, so it will be a while before she is on enough volume to take her off daytime iv fluids. Of course all of this delays us getting home, TPN training has been delayed and now it is getting really close to my deadline of the long school holidays to be home. I am reaching the end of my tether - I don't mind hospital when Daisy is acutely unwell, she is safe there, but as her condition is chronic, Andy and I can manage her at home. I hate that she is referred to as a patient and that we are so institutionalised, I don't enjoy my goldfish bowl existence or this complete lack of privacy, I crave the chance to sit on the sofa, cook food in anything other than a microwave and shut the door to the rest of the world. Most of all I am fed up of our family not being together - I want to be able to help Theo with his homework face to face, not via the phone, I want to make sure that Xanthe is remembering her Irish Dancing shoes on a thursday, not texting Andy to remind her and I don't want to miss any more of Jules growing up....
Websites close to my heart
- Shooting Star Chase (Daisy's Hospice)
- Great Ormond Street Hospital Children's Charity
- Torbay Holiday Helper's Network
- Sick Children's Trust
- Daisy's Angels - Facebook Page
- About Costello Syndrome
- Asperger Syndrome
- Caudwell Children
- Together for Short Lives (Children's Hospices in the UK)
- Costello Syndrome Support Group
- Give Kids The World
- PostPals - Putting Smiles on Sick Children's Faces
- Singing Hands (Daisy is their No1 Fan!)
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