In true Daisy style she was still smiling, however her blood pressure was unstable and she needed one of her favourite IV fluid boluses to stabilise her. Blood cultures have been taken but we are working on the assumption she once again has bacterial sepsis caused by a line infection. Antibiotics have been started (2 weeks and 1 day since the last lot were finished - a record!) and by late afternoon she was stable enough to be transferred back to our wonderful Queen Mary's Hospital.
As always it's two steps forward and one step back and at least this time she did not need to go into Paediatric Intensive Care....and she did get to go to Chase at last, though leaving by blue light ambulance was not quite in the plan....
She is there for two nights until Thursday lunchtime - theoretically this should give me a break but the reality is I have had a day of taking rubbish to the dump, sorting out the children's clothes, tidying cupboards and taking bags to the charity shop. I know to some people this will not be the ideal day off but for me it is a chance to start gaining some control back, over the past few months (and years) we have lived off our nerves, ultimately Daisy's condition is incurable and the uncertainty of what will be around the corner is always going to be there but at least we have learned to go with the flow of it now. This way of life is the norm for us now so rather than putting off sorting out the house until things get better I have decided to deal with things now. Things have not got worse and that's the best way to look with things. so rather than putting off all those house tidying projects I'm going to tackle them now....I have black bags at the ready and I'm braced to sort out the children's wardrobes once and for all!
I did speak to the nurses looking after Daisy this evening and she has a low grade fever so I'm keeping everything crossed this does not materialise into something more sinister. As always I sleep with my mobile and the home phone next to my bed so will not be suprised if I do get a call in the early hours of the morning. It will be a bit of logistical nightmare if the hospice do call to say that Daisy needs to be back in hospital however as Andy is in Manchester tonight so I am on my own with the three older children. We are blessed with the most wonderful friends and I know I can phone any number of good friends in the early hours if needs be to sit with the children if I do need to drive to Guildford.
Andy is in Manchester for a couple of business development meetings for his new business. He officially leaves his company on a redundancy package next week and we both agree that this is the best thing that could happen to us. He was looking increasingly tired and stressed and could not have continued at the pace that he was working, it is so nice to see him looking relaxed and even losing a few pounds in weight as a result of being made redundant! The one thing Daisy has taught us is to really put things in perspective - the most important thing is family time and creating happy memories. On Friday Andy will be able to attend one of Xanthe's school assemblies for the first time in years, that is worth all the bonuses in the world!
We are trying to take Daisy to school for 2 -3 afternoons a week to coincide with her breaks from TPN - I stay with her for the session as she is still so medically fragile but as you can see from the picture she is so happy to be back, even though all she can do is sniff and lick the crisps on her plate! (you can see the line to her enteral (milk) feed pump at the back of the chair - my role at school is basically to follow her around with the backpack containing the pump - from Global Brand Manager to official bag carrier....)
Daisy amazes me at how adaptable she is, she was so excited to come home and now takes it in her stride and is not even upset when it is time to go back to the hospital (at 5.30) - she even gets excited seeing her room in the hospital again as it is also such a part of her life. I'm so relieved that Daisy has transitioned into this new stage so easily, the night before she was due to come home for the first time I lay in bed worrying - for nearly 8 months our lives have revolved around Daisy being in hospital and we have adapted our home life to fit with this. Would it feel strange having her around the house again? Of course, I needn't have worried, from the moment she arrived home the traumas and worries of the past few months melted away. Lots of people have commented how the other children look so much happier too, they love to come home and play with Daisy and we have settled into a routine of sorts. The TPN can be taken down at 12pm and goes back up again at 6pm, it's amazing how much we can fit in during these short hours. One of the real bonuses is that I have been able to take Daisy back to school for a few sessions, it's a safe environment for Daisy infection wise as there are only 2 other children in her class, she also gets to spend time with the class next door which only has around 6 children. Not suprisingly we have seen huge leaps in Daisy's development since this new phase has begun, she is more vocal, is getting stronger on her feet and her sign language is racing ahead.
One of the unexpected problems has been a massive increase in Daisy's summer allergies, having been confined to a room for so long to suddenly be released to a pollen filled outdoors has meant that her nose is constantly streaming and any effort leaves her wheezing. Hopefully this is a small price to pay for a taste of life in the real world!
The reality is however that Daisy is still attached to a pump 24 hours a day. From a few months of age she has been feed her prescription milk feed via a pump into her tummy for 20+ hours a day. In order to maintain her blood sugars while off TPN and continue to stimulate her dodgy gastrointestinal system Daisy is attached to her feed pump all the time, running at a fantastic rate of 35 mls an hour - the highest she has managed since last summer. The feed all goes into her new jejunal tube at the top of her intestines, we know that not all of it is absorbed and she still has really runny nappies but this too is a step forward. The truth is though that being attached to a pump all the time is limiting her new freedom, I would love to see her make her own way around the classroom without an adult walking behind with her backpack containing the pump. She is too small and weak yet to carry the backpack so for the timebeing she gets freedom, at a price...
The next milestone would be to have a complete fortnight off iv antibiotics without any more line/blood infections. Next week she will hopefully reach this point so fingers crossed! We are waiting for the funding panel at the hospital to approve the use of specialist line locks which we can put into Daisy's Hickman line and decrease the risk of line infections. In fact waiting for funding panels to approve various things is going to be the common theme for us now. Despite our excitement at the thought of getting a mobile TPN pump following our last GOS visit, this has been stalled a bit by the fact that in todays wonderful NHS, devolved budgets means that no-one actually wants to pay for anything as it is always someone else's responsibility... So in the meantime we are still waiting for some appropriate funding panel to approve the mobile TPN pump which would ultimately mean that Daisy could have even more time at home or school and improve her quality of life even more. Another example of this crazy situation is Daisy's enteral pump which we use to give her milk feeds. She has had a mobile enteral pump for many years but while in hospital tends to use the hospital feed pumps. As we are now out and about for a few hours we use her mobile pump reverting the the hospital pump for overnight feeds. When I tried to order a box of giving sets (the tubes which attach to Daisy's tummy) which we use with the mobile pump I ran into a situation worthy of a Monty Python sketch - as Daisy is in hospital we cannot order equipment (ie giving sets) for use at home, but the only way she can be mobile at home is to use the mobile pump -again this is all down to who owns the budget for what. Much as I love our wonderful NHS, Daisy is testing their systems to their limits!
A while ago, in the early days when Daisy was still tiny I would have got angry and thrown my toys out of the pram at this situation but the years, and particularly the last 8 months have taught me patience and perspective. We are inching towards the day when we don't have to put her back into the car at 5.30 to go back to the hospital, and when the juggling of children, activities and Daisy will be focused around the home a bit more so these bureaucrats and their inconveniences are quite low on my list of priorities - there is always a solution as long as we stay focused on the goal. And in our case the goal is to be home for the summer.
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!)