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......
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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