Given the space between this post and the last one you will probably guess that things have moved on. Daisy eventually got her port taken out and new temporary picc line put in. She went to theatre last Wednesday evening at 8.30pm and the surgeons took the port out (leaving yet another scar) and put a temporary femoral line into her groin (stitched in to add insult to injury!). Our warders (aka nurses) at GOS thought that this would all be fine despite consultants both at GOS and at our home hospital insisting that a femoral line was only a temporary measure (they are not meant for long term use and come out easily) and was just to tide her over until the picc line could be put in, hopefully within the next couple of days. Once again the issue of bed management and Daisy overstaying her welcome reared its head on Rainforest ward.
Sadly, the system they have in place of booking complex children in for minor procedures on short stay beds is not working in Daisy's case - every single time this has been tried Daisy has needed the bed for longer than the allocated 3 days. It may come as a suprise to many of you to learn that God's Own Special Hospital (as Great Ormond Street is known in the trade) doesn't cope well with children who do not do things according to plan - actually I'm being unfair, it seems to just be Rainforest ward....Our situation last week was that nurses were trying to ship Daisy back to the local ward with an unsafe line against the recommendations of her consultant just to free up the bed space. This was very obvious when I saw Daisy's file open on the nurses station outside her room, there was a note on the front stating she was in for a procedure on Monday, if well enough to be discharged back to local on Tuesday and (in capital letters) must leave ward on Wednesday. It's a sorry state of affairs when the bed managers have precedence over clinicians....
Anyway, clearly Daisy was not going to be shipped back to her local with an unsafe line - the local doctors would not accept her back, her gastro consultant at GOS was furious that it had even been suggested and I completely threw my toys out of the pram! I told the nurses that the bed issue was not my problem and to stop treating my daughter once again as an inconvenience, I tried to slam the door of her cubicle, forgetting that it was on a self closer and so the drama was lost a bit as the door slowly closed shut. Our GOS consultant had made himself even more unpopular with the bed managers for Daisy's sake and then had moved heaven and earth to get her a theatre slot with the interventional radiology team later on Thursday to have the picc line fitted. His registrar told me that he had even taken on some of another consultants cases just so they could fit her in, I am so grateful to him for that.
So by Friday morning Daisy was good to go - only I did have to remind the nurses that Daisy would need TPN over the weekend and had they contacted the local pharmacy with her prescription (of course they hadn't!). We had to be blue lighted back to Queen Mary's as there was only enough dextrose provided for an hours journey and south London on Friday rush hour was certainly going to take longer than an hour!
Daisy's temperature came down as soon as the infected port came out and the plan is to continue all the horrible antibiotic and antifungal infusions for a week so today is the last day. Blood cultures were done yesterday and I am keeping everything crossed they are negative, meaning that the bugs in her blood stream are gone. She also had another MRSA swab done in GOS and that was negative too - of course this being the NHS 2 Queeen mary's negative swabs and 1 GOS negative swab do not add up to 3 negative swabs, each hospital likes to have their own set, so Queen Mary's swab 3 is currently being processed, if it is negative for MRSA it means that Daisy will be able to leave her cubicle. This will be so fantastic as she will be able to visit the playroom, obviously being immunosuppressed this can't be when other children are there but the Play specialist has said she can have "Daisy time" in the playroom each day...
The next stage had been to restart the steroid treatment and start on infusions of a new, stronger immunosuppressant drug, I use the past tense because as always the proverbial spanners have been thrown into the works. Both Andy and I noticed independently that Daisy was looking a bit jaundiced, her blood results today confirmed that there is a problem with her liver, probably due to the TPN and the fact that she is not being fed into her tummy. An ultrasound showed her bile duct was full of sludge, she has been vomiting lots of bile and is in a lot of discomfort at night so this is probably the cause. The docs here are speaking to the docs at GOS and tomorrow she may start on yet another medicine to try and put this right. She really needs to be fed into her tummy to stop this sort of thing happening, but it just does not work properly, not only does she have the massive inflammation, her stomach does not empty properly and her gut does not move as it should....the answer is, who knows????
So until her liver function stabilises once again we have to delay the treatment for her underlying condition and this all delays getting home at some point.
Still, it could be worse, we could be stuck in Rainforest, at least this way we are in a hospital only 10 minutes drive from our home with staff who know and love her and don't treat her as a bed blocker!
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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