I did blog for a little while and life (and technology probs) took over, but I feel the need to get back to writing and with so much happening in my life it's going to be the only way for friends to keep up with what's going on chez Nimmo and especially with Daisy.
So, those of you that don't have the latest update here it is in a nutshell - she started school (yippee!!!) and then went back into hospital (boo!!) but came out quickly (yippee again!!!) but went back in v quickly (OK enough of the pantomime!) and has been in hospital ever since. As always it's her gut, technically known as complex GI issues! Where do I begin... basically her whole gastro-intestinal system does not work properly - from her swallow to her bottom. Any infection sends it into shutdown and because it does not work properly this can cause infections (especially wee infections, in medi speak UTI's). It was a severe UTI that caused her whole gut to shut down as never before and spend a week pouring out bile from her gastrostomy, we attempted tiny amounts of feed after a week to challenge the gut but only got to 60mls an hour before she started vomiting again, this has been the pattern for the last month which she has spent in our local hospital - she is currently on about 28mls/hour of diluted feed supplemented by IV fluids. Getting the IVs into her has been fun and she is now on her 16th cannula as a result of very limited venous access.
So this is the plan (and based on previous experience this is where it all goes even more pear shaped):-
On Monday Daisy transfers from our lovely second home at Queen Marys where she is known and loved and cherished but where there is no intensive care and where she cannot be anaesthetised, moving to Great Ormond Street..... don't get me wrong, fabulous hospital, amazing intensive care but Daisy will be an interesting case there and we will have to start from the beginning as they like to do things there way and it always takes a few of her blips to convince the staff that really they should listen to me and her local doctors, we actually do know what we are talking about. It does not help that her main GI consultant is out of the country and will not be back to Great Ormond street (GOSH) until 10 November or that the registrars he has left in charge think Daisy is only going to be with them for 3 days then shipped back to the local hospital. Daisy never does less than a week at GOSH and always needs intensive care after a general anaesthetic so I think that they will be revisiting their GI bed availability come day 3.
Things we need GOSH to do :-
Upper and lower endoscopy
Place a permanent line (eg Portacath/Hickman)
Decide once and for all if she needs Total Parenteral Nutrition or even just paretenteral nutrition - this is where the feed is given directly into the vein (not without a lot of risks but given her gut does not work this may be the ony option)
Possible perform a full thickness biopsy to look at what the constitution of Daisy's gut it
Review all her meds - I think she is on 15 different meds through the course of the day - all I ever do is draw up meds
Give us a plan
The children are getting used to Daisy being away and we are adjusting to another long hospital stint, but really all we want is to be back together again. However Andy and I are happy to have in hospital while there is hope that there could be a plan and a clearer diagnosis - while she has a diagnosis of a syndrome it does not explain her extreme GI issues and before her admission we were tearing our hair out trying to manage things, perhaps it's taken things to come to a head for us to have some answers.......
Now to blogging practicalities - we have had a technology year from hell. Virgin media continues to underwhelm us with their services, the senile cat peed on our very good laptop, our very old but serviceable laptop shuffled off this mortal coil and I am currently reduced to begging Theo for time on the only working computer in the house which happens to be in his bedroom. Andy has treated himself to a very fancy new netbook but we are not allowed a look in, he claims its for work but I saw him playing poker on it the other night... I'm trying to work on a solution so be patient if I don't update as often as I could
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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