At last we have moved into a new chapter in Daisy's life. She is now able to tolerate 6 hours off TPN!!! This means for 6 hours of the day she does not have mixture of vitamins, minerals, lipids and other essentials to life dripping into her via a hickman line into a main vein - which means that she can leave the hospital for a few hours. This has made such a big improvement to the quality of Daisy's life as while she was on 24 hour TPN and a hospital based pump she was essentially tied to walking up and down the ward, now, we can get out and about. And the best thing is that just over a week ago we brought Daisy home for the afternoon!!!! This was the first time she had been home in nearly 8 months so it was a huge step for us all.
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!)
special needs (86) costello syndrome (45) disability (33) aspergers (19) Great Ormond Street (18) TPN (18) cancer (18) carers (16) parenting (14) autism (10) shooting star chase (9) children's hospice (8) Blogging (6) family (6) SEN (5) hospice (5) Mitrofanoff (4) diagnosis (4) BIBs (3) Britmums (3) Neuropathic Bladder (3) communication (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)