Daisy has now been home for 2 weeks and, just like the pain of childbirth, memories of the endless months in hospital are slowly disappearing.... Just because Daisy is home does not mean she is better and the stress and worry of looking after her is still there, however this time we are in control and at least we are in our own environment.
The first week at home was spent getting into the swing of doing the TPN at home, clearly 10 months in hospital has institutionalised me as I have arranged Daisy's drug cupboard like a hospital cupboard and labelled all the shelves and boxes , sometimes the obsessive compulsive streak in me can be quite handy. We have now been trying to arrange and organise everything Daisy needs to have some sort of normality and for Andy and I to get a break. We have been lucky in getting our care package hours increased to get some more support during the day and we have relented and agreed to having night support which will mean having someone in the house for a few nights a week to manage Daisy's needs overnight. We have always shied away from this sort of support, preferring to rely on time spent at our hospice as overnight help, but as Daisy has moved the goalposts in her needs somewhat we have to accept more help with her. Of course this is all in the planning stage - now we need to get the right people in place to help us. When you have a child with complex needs you get used to having people come to the house all the time, over the years we have got used to a regular team of people - our friends from Chase Hospice and The Rainbow Trust, community nurses, key worker, social worker, physio. Now our team will be expanded even more.
We had a discharge videoconference with the Great Ormond Street Team and Queen Marys team a few days after coming home. Some people couldn't make the meeting but I was still amazed with how many people are involved in Daisy's medical care - and this was only to discuss the gastro elements of her life. We now have plans for managing future line infections and how to manage various other emergencies. The main plan to stay infection free however is for only Andy or I to ever touch Daisy's hickman line. This is a big emphasis with the GOSH home TPN programme, their research shows that the less people accessing the line, the less risk of infection. We also have to use anti-microbial "line locks" which have been proven to decrease infections in home TPN patients by 70%. The bottom line is to try and optimise Daisy's chances of remaining infection free we have to commit to only being the ones to put up and take down the TPN, take bloods from her line and do all the other stuff involved with managing a child with a central line on home TPN. At times over the past 10 months we were very close to not bringing Daisy home alive so this is a small price to pay for having her home.
Our second week at home has been spent at our wonderful hospice, Chase, in Guildford. Daisy stayed in her own room (complete with obligatory TV showing continuous Peppa Pig episodes) while the three other children, Andy and I stayed in an upstairs flat in the building. I did the TPN connections in the evenings and disconnections in the morning but apart from answering questions on Daisy's care my role was redundant which meant I could indulge in some retail therapy in Guildford and enjoy lovely walks along the canal near the hospice with Andy and the children. In fact tempting the children out into the fresh air for walks was really difficult as there is so much to do at Chase and the british weather even managed to shine for a couple of days so they could play in the garden. We left on Sunday, a bit worried as Daisy decided to spike a temperature and I had visions of putting the A&E plan into action. Her temp came down later in the evening and I am keeping my fingers crossed it was nothing sinister, although we did blood cultures this morning to rule out any infection. Daisy is massively at risk of infection at the moment as not only is she immunsuppressed because of the treatment for the inflammatory bowel disease, but she is also neutropenic, which means she does not have enough of the disease fighting white blood cells to cope with an infection. The GOS doctors think this may be a side effect of one of her medications, unfortunately this medication is working well to help calm down her inflammation so they don't want to take her off it, so for the timebeing she is having regular bloods done to keep a close eye on things.
We have a week at home now and I am still trying to get to the bottom of the mountain of clutter that has grown in all the cupboards since Daisy has been born. The best thing is just being able to spend family time together , Daisy's infection risk means that we can't plan too much but it's so nice all be under one roof - we regularly ignore the phone (sorry to all those that have experienced this) and the door bell because after months of having people around us all the time, it's just so good to be just us....
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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