Given the time elapsed between this post and the last one you would be right in guessing we have just had half term (let the juggling commence!). As always the complete lack of strategic planning on our behalf (suprising when you bear in mind we both have - or in my case, had, roles involving strategic planning) meant that Andy had not booked any holiday and I was very light on respite time (of course everyone wants respite during half term). Anyway, Grandma (my mother - think the Jennifer Saunders character in abfab with a welsh accent) came to the rescue and had Theo to stay for a week which included attending a Blues Brothers tribute night (he fell asleep at the table!), sitting in a Ferrari - he's moved his obsession from Dr Who to Top Gear and viewing 1,600 videos on You Tube! Xanthe had two sleepovers and a day with a friend - all of which involved experimenting with copious amounts of make up.
Jules made it through half a day at the holiday club before nearly knocking himslef unconcious on a radiator while diving for a football. Having spent considerable time in hospital now I know that the fact that he cried straight away was a good sign and hopefully no permanent damage has been done. It is however difficult to tell the difference between genuine delirium and just stream of conciousness with Jules , although I'm opting for the latter.
In massive contrast to my last post, Daisy has had a fantastic week. We have been able to push her milk volume up more and more (this is the feed she receives via her gastrostomy button directly into her tummy). She remains on 24 hour TPN with some gastrostomy feeds. This in itself is a massive breakthrough. She is still on her nuclear strength antibiotics, and, although I hate her being on them I have to admit that the IV immunosuppressants and steroids seem to be doing the trick - I hope. Her latest blood cultures are negative which is great as hopefully she has cleared those nasty bugs from her bloodstream. I say hopefully as the problem is no-one wants to give the nod to take her off the antibiotics. The pattern seems to be with Daisy is for a week or so without antibiotics before another infection kicks in. This was the case over the summer before her hospitalisation so it's not even since having a Hickman line. Her main consultant is back tomorrow (having also had to juggle her childcare arrangements last week, it's why we get on so well, in many ways we share similar worries!) and the consultant microbiologist wants to brainstorm a plan with her. I feel I need to send this consultant microbiologist a picture of Daisy, he has received so many samples of bodily fluid from her over the past few years and has never met her, but he, like so many of Daisy's team, is caught up in her life.
Daisy feeling better and stronger brings its own challenges, she is no longer content just to lie in bed and watch Cbeebies, she wants to get up and be busy. Just like the rest of my children she is not a fan of daytime naps so the days are long. I am her teacher, physiotherapist, speech therapist, vision teacher, interpreter, nurse (for some things!) as well as her mummy. I am waiting for the powers to be to sort out the bureaucracy so that I can just have one role of mummy but in the meantime, and in the interests of not losing any more time with her development, I do everyone's job (for no financial return other than a smile). The best thing is that we have been able to venture out of her cubicle. This is such a milestone and for Daisy is like discovering a whole new world. We have visited the nursing station, looked at the children in the bays, taken in the parents room , checked out the doctor's office and most exciting of all, been to the playroom!!!!! Of course now she wants so spend all day out and about on the ward, with someone behind her wheeling her IV pole loaded with TPN, enteral feed, syring driver and someone next to her holding her hand as she is so unsteady on her feed (did I mention that ontop of everything she has a problem with her vestibular/balance function?).
Being immunosuppressed means that Princess Daisy cannot always have her wish, particularly as the ward is currently full of cases of diarhea and vomiting. So the onus is on me to be children's entertainer again. This is proving somewhat difficult as the TV in her room is once again stuck on Channel 5 and I'm not sure that the storylines in Hollyoaks are quite a suitable replacement for "In the Night Garden" on Cbeebies.....
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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