It's been one of those weeks, we have been thrown challenge after challenge - not all of them Daisy related.
We are trying to keep focused on getting to Chase Hospice for Daisy's birthday on Monday and to spend Christmas together as a family. When we met with her GOS consultant last week he agreed to keep this week free and try and get a date asap to get her back in to have her infected line removed and a temporary picc line placed until we could go back in for a long term stay for all her other procedures. However despite his best efforts the only date that was available was 23rd December - the day after her birthday and just before Christmas. As Daisy has previously had problems with anaesthetic there was a danger that she could spend Christmas day in intensive care, meaning that Christmas would effectively be cancelled for the rest of the children who are counting the days until we go to Chase.
Our moral dilemma was made worse as Daisy started to spike temperatures again - we were running the risk that if the MRSA was still in her bloodstream we could find ourselves in an emergency situation with a potentially fatal blood infection. The doctors took blood cultures and I kept everything crossed that the temperature spikes were the same virus which is currently laying Andy low and nothing more serious. We had a call from the microbiologists to say that the bloods were growing something meaning that she had a bacterial infection of the bloodstream - with Andy feeling so rough I had to try and make the decision, did we cancel Christmas and go to GOS or did we take the risk with the line and go to Chase. I was talking this through with Daisy's consultant when the attending consultant popped her head around the door of the cubicle to let me know that although the cultures were growing one bug it was not MRSA and not only that for the first time in 15 months her skin swabs around her gastrostomy site were negative for MRSA. This was amazing news, there is a strong possibility that we may have rid Daisy of her nemesis!!!! This made the decision to turn down the pre-Christmas GOS admission slightly easier - only slightly, the bug she does have in her bloodstream is still nasty and left unchecked could cause heart problems (not great with an already problematic heart) however on a scale of nasty bugs to have it is slightly less nasty than the virulent strain of MRSA that Daisy had been infected with.
Of course things are never ever straightforward with our Daisy -the microbiologists would still like her line removed and this needs to be organised for as soon as possible after Christmas. Given that she also needs several other procedure at Great Ormond Street in the new year we will probably transfer up for a longer stay.
While we allowed ourselves to breathe a little sigh of relief over the MRSA, another issue crept up to suprise us. Daisy is severely anaemic - at first it was thought that blood samples may have been contaminated, but repeat samples were lower. As always with Daisy the doctors are a bit stumped as to why haemoglobin levels are suddenly so low. The assumption is that she is anaemic because of her chronic gut issues but the haemotologists have ordered lots of tests to try to get to the bottom of things. In the meantime, Daisy is currently having a blood transfusion, this is not as straightforward as it would be in any other child, Daisy has a problem maintaining her blood sugars as a result of her very minimal levels of growth hormone (this plays a role in regulating blood sugars as well as growth). Her endocrinoligist has taken her off growth hormone therapy while she is so ill so her sugars can drop quickly. While she is being transfused she cannot be on TPN so we are having to monitor her blood sugars incase she develops hypoglycaemia. I have a tube of hypstop at the ready to rub into her gums to bring her sugars up...nothing is straightforward with this girl!
Not only were we dealing with Daisy's issues this week, it was also the end of term for the children with the usual school plays, parties and trying to get end of term presents sorted for the teachers. With the tiredness and emotion of everything I walked into a door and narrowly avoided breaking my nose - as I held my face with blood pouring out of my nose I just couldn't believe what I had done, at the same time Andy was lying in bed with a temperature and the children were overexcited about going to Chase for Christmas, completely unaware of how close it had come to being cancelled. The icing on the cake then turned out to be having to take our elderly, senile old cat to be put down - the one who had mistaken my old laptop for a litter tray had now taken to using the dining table or kitchen worksurface instead. The time had come for an old friend to go in a dignified way...
Needless to say Andy and I are living on reserves now - thank goodness my mum is staying to hold the fort! We are counting the hours until Monday when Daisy will (hopefully) be transferred to Chase to celebrate her 4th birthday. The team from Chase have pulled out all the stops to make this happen, nurses have visited to be trained on how to do Daisy's TPN and they are happy to do all her various drug infusions. Having Chase hospice as part of our lives has become more important than ever now - just having a few days off the physical effort of trying to be in several places at once and keep smiling will just be so fabulous. We are due back in the hospital on Boxing day and the following week we will probably be transferred back up to Great Ormond Street but at least we will have recharged our batteries and we will have had the opportunity to spend some quality time together as a family.
I just hope my next post will be from Chase - I promise I will post some pics of Daisy in her party dress!
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!)
special needs (85) costello syndrome (43) disability (32) TPN (18) aspergers (18) cancer (18) Great Ormond Street (17) carers (16) parenting (13) autism (9) shooting star chase (9) children's hospice (8) Blogging (6) family (6) SEN (5) hospice (5) Mitrofanoff (4) BIBs (3) Britmums (3) Neuropathic Bladder (3) communication (3) diagnosis (3) holiday (3) benefit cuts (2) david cameron (2) gastroenterology (2) singing hands (2) travel insurance (2) BSL (1) Child Hospice (1) Colectomy (1) antibiotics (1) benefit scrounger (1) bladder (1) france (1) health (1) line infection (1) makaton (1) portage (1) siblings (1) sign language (1) sign supported english (1) ultrasound (1)