We have been trying to regrade Daisy's feeding - this apparantly is the medical term to get someone off TPN (feeding through the veins) and back onto enteral feeding (through the tummy). As Daisy is very volume intolerant and ontop of her inflammation has lots of other issues with her digestive system it was decided to start her very slowly - on 1ml per hour of her feed over 20 hours . Yes, that's right! 1 ml per hour - not even enough to put through her enteral pump, we had to syringe it into her gastrostomy! Well - the reality is we are only going through the motions of trying to regrade her as no-one really believes she will be back up to anywhere near a sensible volume for a long, long time. Daisy reacted by having lots of mucousy diarrhea ( a sign that her gut is still inflammed) and then her tummy bloated up like she was pregnant - a sign that her gut was on strike again! So needless to say we stopped the feeds and have tentatively restarted them again today although she is still looking bloated and is uncomfortable tonight. The whole idea more than anything is to keep the gut stimulated ready for feeding at some point.
Everyone here is waiting for Daisy's next appointment at Great Ormond Street Hospital in just under 2 weeks. We hope that Daisy's gastroenterologist will give us a date for her next upper and lower endoscopy and biopsies. We also need him to confirm formally that Daisy is on TPN for the long term so that we can get the ball rolling to get TPN at home and eventually get her home. Getting home is a long way off for lots of reasons - no-one really believes that the steroids have worked and we may need to start some other treatment protocol and ontop of that going home on TPN is very complicated and when we do we will be the only family in our area on it. The pharmacist told me today that it can take a minimum of 2 months to sort out and given our experience in waiting 12 months to fund and set up Daisy's growth hormone injections we are not holding our breath. I'm now starting to think that Easter could be a good time to aim for.....
It's so frustrating as our lives are really in everyone elses hands, not least Daisy's . All these plans are made on the assumption that she will be well enough to come home however, she does have a habit of throwing some not inconsiderable spanners into the works. Andy and I managed to catch a rare 5 minutes face to face this evening and we both agreed that there's no point in beating our chests about the situation, it's crap but it could be so much worse and we are just going to have to get on with it, we've got this far, we'll keep going.
We did have some good news today. Up until about 6pm this evening our Christmas together at Chase Hospice was looking in jeopardy - there was the issue with taking the hospital TPN pump with us and then we were told that there was no guarantee that the ward could hold Daisy's cubicle for us while she was out of it. The reality that we were facing was to risk leaving the hospital with no guarantee of a bed on boxing day, we would have had to go to A&E and be shipped to wherever there was a bed. I had visions of all six of us crammed into Daisy's isolation cubicle on Christmas day trying to make the most of it and suggested to the hospital managers that they might want to explain the real reason for not being at Chase to the children. Anyway, to cut a long story short the powers that be (whoever they are) decided that in the season of goodwill not only could we take Daisy's TPN pump out of the hospital but they would hold her bed, not just for Christmas night but from her birthday on the 22nd through to Boxing day. This means we will have a whole four nights together in Chase Hospice before having to return to hospital - barring any of Daisy's infamous spanners of course.....!
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) aspergers (19) TPN (18) cancer (18) Great Ormond Street (17) 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)