Day two comes to an end at Great Ormond Street and Daisy still has an infected line in place......grrrrrrr! The fine balance of operating theatre lists and the availability of specialist teams was thrown by Daisy needing an urgent blood transfusion yesterday and this has thrown everything out of kilter. As predicted we had the night from hell with Daisy - a combination of late meds, transfusion, being clinically unwell and nurses who do not know Daisy as well as our local nurses meant that both she and I are a bit sleep deprived at the moment. The interventional radiology team who are the experts in putting in lines had a full list today so the plan had been for the surgeons to take out Daisy's infected line and for an interventional radiologist to come in to place the new one. This all had to be done on the emergency surgical list and as Daisy is still classed as MRSA positive she would have to be done at the end of the list. Problem is with emergency lists its difficult to plan timings and with the surgeons running late it meant that the Interventional Radiologists had finished their shift and gone off duty. Daisy's consultant was not happy with a surgeon placing the new line in a late night theatre slot as there were too many risks both as she is difficult to access and with her anaesthetic risks. So now we are on to plan C - tomorrow the surgeons are going to take the line out and a very temporary femoral line will be placed in her groin (ouch!) - the reason for this is that the infamous Interventional Radiology team are not available tomorrow (at this point I start chanting my mantra about why doesn't the NHS get its head around the fact that people are ill 24/7 and not 9-5 and weekdays only...). This will mean that she will then need another anaesthetic in a few days to place a more permanent line.......even I am losing the plot at this point.

The bottom line is that as per usual Daisy will be outstaying her welcome on Rainforest ward, we will probably lose our bed back at the local and Andy and I will have to do some rapid juggling to work out domestic arrangements, which includes getting Theo a warm jacket for his first Scout Camp of the season on Saturday and getting Jules and Xanthe to their siblings day at Chase on the same day. Being superhuman we will of course achieve this and hopefully still smile at the miserable ward sister on Rainforest who will hate us for throwing her bed management arrangements yet again! Good news is that the big cheese Gastroenterologist Daisy is under is coming to see her tomorrow - he tends to be able to get things done and I am pinning my hopes on him having a good plan for how we can move forward. In the meantime I am going to nip out and treat myself to some throat lozenges for my sore throat, a "tasty" norma-no-mates microwave meal and a small screw top bottle of red wine - after all, tomorrow is another day...........(we just have to get through another night)


  1. Ah, this scenario brings back many memories. I will join you in a yummy microwave meal and mini bottle of wine for a virtual dinner party across the cubicles!
    We can't get anything at Chase for first week Aug which is a shame but we must try and get together at some point soon.
    Hang on in there
    Sarah xx

  2. Anonymous8:59 pm

    You should buy two bottles of wine, I would!! I hope the last two days went well for you. Great pics too! She is looking great, see you soon,
    Mark & co,
    Bristol x

  3. hiya,

    Would you like to Join me with the People from the Genetic Interest Group, and other rare disorder groups at the House Of commons for a reception on February 25th, 12.15 until 4pm.

    You could then give it to the MP's abut the 9-5 NHS and what having a rare disorder means as far as health care.

    If you do, let me know and I will give the GIG a ring to get you an invite.

    Love col