I only stay at the hospital if we are at GOS or if Daisy is really poorly and at risk of being transferred during the night, we only live 10 mins drive away so we are really lucky. I leave most evenings at around 10.30pm and I drive back at 8.30am in the morning after dropping the other children at a friend's house.
Every morning I drive to Queen Mary's wondering what will greet me when I arrive, sometimes I even know in advance as I will have had a call from the nurses before I have even left the house..........
Last Friday I drove in hopeful that this would be the day that we would have the final all clear for Daisy's blood cultures & a third set of clear MRSA swabs, this was also the first day that she had stopped the 10 hours worth of toxic drug infusions and we could start moving on with treating her underlying bowel condition......yes well clearly this was not going to be a good day, I walked into Daisy's room and she sat crying her eyes out pointing at her arm which was swollen up like a Michelin Man - her picc line had tissued, meaning in short that it had to come out, we had to stop the TPN, get a cannula into her before her blood sugars dropped dangerously low and get her into a hospital that could place a central line asap. Once again my plans to leave the hospital a little earlier for a change that evening so that Andy and I could have a curry and a bottle of wine infront of the TV were clearly not meant to be.
As always Daisy loves to cause a drama, the doctor's ward round was put on hold as they attempted to get some line access into her and start fluid and her consultant delayed her clinic as she contacted our gastro consultant at GOS to get her transferred asap. I was dreading having to go to Rainforest so was very pleased to be told that as Rainforest had no room for us (and in their infinite wisdom had suggested that perhaps a new line could be placed at the local hospital - do these people not read her notes?????) , instead bed management had got us a cubicle on Tiger ward. This was good - it's in the new modern part of GOS so all cubicles have en suite bathrooms and Daisy has spent a week on this ward last year when she overstayed her welcome with breathing difficulties following an MRI under general anaesthetic. During that time the staff were fantastic and unlike the staff on Rainforest I was completely unaware of any difficulties Daisy overstaying her welcome may have caused to their bed management plans. In fact the nurse assigned to Daisy that evening had remembered her from before and even had an "In the Night Garden" DVD all primed and ready for her!
Daisy's cannula only lasted a few hours and she had to be recannulated at GOS, then overnight she detatched herself from her IV line and lost a considerable amount of blood, this meant that she needed yet another blood transfusion in the morning, delaying surgery for the new line even further. During the course of the day she spike a temperature and developed an odd rash and my heart was in my mouth that she had become septic again. She went to theatre at 8pm and came back with a lovely new hickman line which the surgeon has promised he has done every trick in the book to prevent infection - well we'll ask for him specifically if it does get infected!
We came back to Queen Mary's on Sunday and by Monday Daisy had really picked up, her blood cultures were confirmed as clear and she is now up to 3 clear MRSA swabs at Queen Marys and 2 clear swabs at GOS - still not enough to get us out of the room however, the concerns now more are for her infection risk as her immunity is so compromised.
Daisy had a lovely day today, she slept well last night - probably a combination of antihistamine for her rash (which is now disappearing and appears to just be another odd Daisy thing), calpol and melatonin. A good night's sleep is a real rarity for Daisy - she hardly ever gets restful sleep and wakes in pain a lot at night so it is lovely when she does sleep well. She has been really happy all day and I have asked the doctors to consider whether we could try and restart a tiny amount of feed again. Of course this has to be run by a huge team both here and at GOS so I will wait for them all to come to a consensus. My gut instinct (no pun intended) is to try and restart the feed while she is so well as she has not been this well in a while.
Of course part of me can't help wondering how long it will last, over the next couple of days we will restart IV steroids and start the big league immunosuppressant therapy, cyclosporin, to try and calm down the autoimmune reaction in her gastrointestinal tract. Once she has been on this therapy for 6 weeks she will return to GOS for her upper and lower endoscopy and at that point we will have a better idea of when we might get home. In the meantime, I am teaching Daisy to click her heels together three times and say "there's no place like home, there's no place like home...."
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) Great Ormond Street (19) aspergers (19) 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)