Still here, still searching for answers.....

So much has happened between the last post and now, it's difficult to know where to begin, and to top that I am sleep deprived as no suprises we are still in GOS and Daisy is still in pain at night...

Not long after the last post, Daisy began to lose significant amounts of blood from her bottom, confirming my suspicion that a crisis was looming, I was relieved that she was an inpatient on Rainforest and not waiting at our local hospital for a bed to be available...

The endoscopy had been rescheduled because of Daisy's temperature and infection so eventually she was scoped a  week later.  Not suprisingly the resuts revealed a significant area of inflammation in her large bowel and explained the heavy blood loss. As a result of the scopes Daisy's pain management requirements went up again and she was stated on an NCA pump (nurse controlled analgesia) of ketamine.  That was the beginning of our battle to get ontop of Daisy's pain, night times continue to be worse and worse and her analgesia requirements have been going up and up.  Morphine was added to the NCA but in typical Daisy fashion she had a really bad reaction to it, despite tolerating IV morphine before.  In fact her reaction was so bad I think that day has gone down as one of our worst - she was screaming in pain, inconsolable and desparately uncomfortable as her bowel stopped working for 10 hours and instead of the usual litre of so of output she lost about 10 mls of green bile all day.  The pain team and palliative care team were at a loss as to what was going on and although she improved once the IV morphine was stopped she is still continuing to have prolonged episodes of pain at night requiring increasing doses of iv ketamine as well as a range of other intravenous analgesics.  The gastro team have called in the oncology team as Costello Syndrome carries a significantly enhanced risk of malignancy and we need to rule this out as a cause of her acute pain, they just don't feel that the colitis, which is being treated with iv steroids, could be the sole cause of her pain.

So where are we now?  Well clearly this stay is now in it's fourth week and the weeks stretch ahead of us, when Daisy first had an infection on arriving I predicted that we would not be home by Easter, now I'm worried if that is a bit optimistic.  The priority is for Daisy to have an MRI under general anaesthetic in order to rule out tumours causing her pain.  The next step is for a decision to be made about whether or not to remove her colon.  We don't believe that the colitis alone is the sole source of her pain but it is the source of discomfort and possibly the reason for her frequent high temperatures and infections.  It is inflammed at the moment but the bleeding has decreased following a course of high-dose steroids (pulse steroids), however our arguement is what happens if it flares up again and Daisy is not in hospital or able to access the pain killing analgesia that can only be administered in a high dependency setting like Rainforest ward.  However the solution is not as straightforward as removing her colon, in order to eliminate any risk of further inflammation and problems her large bowel and rectum would have to be removed, this is major and radical surgery.  We know the colon doesn't work and is not performing any useful function while it is defunctioned however is it worth the massive risk to remove it?  All this will be discussed at a meeting we hope is being organised between ourselves, gastro team members together with members of the palliative team and other specialities, where hopefully we can come up with a longer term plan for Daisy.  On top of all of this we have asked for a Urology review and Endocrine review.  We are concerned that maybe a previously undiagnosed bladder/urological abnormality could be contributing to her problems, this is not unknown in Costello Syndrome.  In addition we know that while still within normal limits, Daisy's bone density has decreased dramatically and we need the endocrine to review this to ensure that she is not moving into the territory where she is developing osteopenia, the precursor to osteoporosis.

As always our lives are in the hands of others, all we can do is constantly remind whoever will listen that we do not have the luxury to sit and wait while meetings are planned and procedures booked, we need Daisy home and we need these things to happen for us to be home.  If the decision is made to perform surgery then this will delay our getting home even further hence the need to make that decision asap, and I don't even want to go down the road of thinking about what potentially could show up during her MRI, we have faced this worry before and it has always proven unfounded so I just keep reminding myself that all the team want to do is eliminate the possibility of cancer because her risk factors are so much higher than a typical child.

Again we feel disempowered - while the wonderful staff do everything possible to make Daisy comfortable with the extreme pain she is experiencing mainly at night, we wait for meetings to be set up and investigations to be scheduled, knowing that our urgency needs to be weighed against the urgency of all the other complicated children who eventually find themselves in this hospital and we just have to hope (with a little bit of tactical cajoling) that the people responsible for being ontop of these things are doing their jobs.

Tonight Daisy is yet again on IV antibiotics, having spiked a temperature yesterday, again it looks like a UTI, confirming the need to get this investigated properly.  Her ketamine is switched up to its night time dose to help manage the pain alongside regular extra boluses of the drug if required, she has received her last dose of IV paracetomol for the day and in a moment her nurse will come in with another one of her IV anti spasmodic meds...

I have phoned home to check that the online grocery order I placed on Monday has arrived and there is enough food to keep everyone happy.  The children are asking when I will be home and I think I will sneak home tomorrow night so that I can go along to an important hospital appointment for Theo together with Andy first thing Thursday morning and return to the hospital in the afternoon.  It means I'm going to have to leave Daisy but the other children need to see a bit of me for a while.  I just hope that by the end of this week we have something more resembling a plan and a firm way forward, already in nearly four weeks Daisy has thrown a few too many spanners in the works so the sooner we move forward the sooner we can think about getting her home and getting on with our lives....


  1. Hello

    Im a long term lurker on your blog and a mum to a little boy with a metabolic syndrome, also presently sitting it out at GOS.

    I do hope the teams get to the root of daisys pain soon.

  2. Anonymous11:46 pm

    Steph and Andy,
    Words are inadequate. Good vibes are all I have.Leonie

  3. My heart absolutely goes out to you. I hope your daughter's pain is under control very soon and you have some answers.