Trying to keep my head, when all around me are losing theirs.....

Daisy had another hospital stay this week, another surgery, another anaesthetic.  She had to have her Hickman line (the central line tunnelled into a main vein which rests near her heart) removed and a new one place in a new vein as the old one had been repaired once and was at risk of breaking and also was colonised with bugs which we were just about keeping under control but which could have caused sepsis at any time.

I'm losing count but by my reckoning that's 9 central lines she has had in her life (with the scars of insertions and removals crisscrossing her chest and neck to prove it) and close on 60 anaesthetics for various surgeries and procedure.....more than the majority of the human population will experience in their lifetime.

Nothing ever goes to plan with Daisy and typically this admission did not go to plan, despite our constant best efforts to keep everyone informed on Daisy's needs and communicate to all teams involved.  We arrived on the ward and met with one of the doctors to be told that there were concerns about Daisy's recent blood clotting tests and we would need to repeat them to see how her blood was clotting that day and whether she would need treatment before the procedure to change her line could go ahead.  So poor Daisy had to have more blood taken, not using her Hickman line but a peripheral bleed.  Her veins are so scarred and damaged it's really really hard to bleed her and so painful and distressing for her, it took four of us to hold her and several attempts to get the 4mls of blood required.

We then had to wait - for the initial clotting results to come back and for the haematology team to discuss and decide on a plan, then for the Interventional Radiologists to  decide if they wanted to go ahead with the line insertion and removal that day. Always waiting, that's what we are so good at, I have learnt to be patient, fill our time, remind myself that this is to ensure Daisy is safe - even though this issue should have been addressed earlier, possibly by bringing her in the night before her surgery to do the blood tests and make a decision.

TPN,  the thing that keeps Daisy alive and nourished is not good for the liver, it is damaging her liver and stops it producing enough of the clotting factors needed for her blood so sometimes she needs extra blood products live plasma or supplementation with Vitamin K to prevent bleeding during surgery.  Nothing is ever straightforward in our world.

We fitted in a visit to see our lovely friends Singing Hands which soon helped Daisy forget about the big bruises on her arms and legs caused by the multiple attempts to get blood and then kept going back and fore to the ward to see if they had heard anything from the Haematology team.  The clock was ticking, planned theatre lists stop at a set time and if we did not receive a plan soon then the whole day would be wasted and we would need to reschedule Daisy's op living with the continued risk that it would break or the bugs colonising it take over.

By 3.30pm we were starving and ordered some food from a favourite little cafe just by the hospital.  Just as our order arrived the ward phoned to say that everyone was happy for the operation to go ahead we needed to get back as soon as possible.  So not for the first time our food was thrown into takeaway containers and we ran back to the hospital.

Typically as Daisy was about to be anaesthetised her stoma bag came off so I was frantically changing the bag while confirming her date of birth and hospital number to the doctors.  It's harder and harder to kiss your child goodbye when they are anaesthetised, it doesn't matter if it's a 7 hour surgery or a quick line change, every time you think you are pushing your luck, handing your child over to the care of the surgeons, hoping that everything goes according to plan.

We were sat in the canteen eating our cold meals when a call came through from the ward and my heart was in my mouth as it was too early for the surgery to be finished.  Unbelievably the surgery had not started although Daisy was intubated and ready as they had found her date of birth on her wristband did not match up with the one on her notes.  This is shocking and should not happen.  I had to return to theatre and confirm Daisy's date of birth so that the surgery could go ahead.  The anaesthetist was furious, another child had to be bumped off the list because of the delay, questions were being asked,, the ward staff who should have picked up this error looked very sheepish.

And in the middle of it all, once Daisy was safely back on the ward and stable, I remained as cool as a cucumber.  Of course once we got home late that night I fired off an email to Daisy's consultant to express my concerns but the bottom line is that no-one died (although the wrong date of birth on a hospital wristband is completely unacceptable and could have lead to a fatal error) , Daisy has had her line change, we are home, I hope that lessons will be learnt.

I used to get so wound up by all these little things that inevitably go wrong with a child as complex as Daisy - bloods could have been done locally the day before so that we were not waiting around for example, but the constant stress and anger can eat away at you, and drag you down and that's not what Daisy needs.  She needs protecting from all these problems, she just needs to see happy faces around her, she needs positive energy from her carers.  So I go with the flow, I know things will not go according to plan, I deal with it and move on, I focus on the good things, she is here, she is alive, life goes on.

And so now we are back at home, she can't go back to school yet as her line is only held in by a stitch and regular readers of this blog will remember this time last year after a line insertion when it migrated into her chest cavity causing a major emergency.  So to avoid any risks of this happening I am trying to keep her quiet and safe at home which is the hardest job in the world as all Daisy wants to do is move around and make up for lost time!

I don't know whether it's because I'm older, whether the system has worn me down or whether I am able to gain perspective and am calmer about dealing with bureaucracy but I'm just happy we are through the other side, focusing on the positives and thinking about the next round of surgery to deal with the prolapse in her mitrofanoff stoma rather than dwelling on what went wrong yesterday.


  1. I am delighted to hear daisy is home and well. Horrified though at the hospital blunders. I completely understand and relate to that need to say 'this is unacceptable, but it's not my fight' it is exhausting and all consuming when mistakes like that wind you up. But to feel angry is a waste of precious energy better spent elsewhere. Complain, as you did, and then think about the important things in life, namely your amazing children. :D

  2. RenataB11:50 pm

    Putting the hospital blunders aside... you did it Steph, or I should say, Daisy did... she had an uncomplicated admission and discharge. Ok, so not in the general scheme of things, but for one of our kids? Wow, Daisy ROCKED that one! So glad you're home x

  3. Louise9:17 am

    Just amazing. I don't know how you do it!

  4. You have a great attitude.  Well done you and Daisy.

  5. It sounds like you have great strength. I'm not sure I could've handled it as calmly! I suppose the bottom line is that Daisy is fine and nothing serious happened and that is ultimately what matters

  6. I wish I could be so calm, I don't seem to have developed it at all with practice.  It's a pity that there were hiccups, though the birth date one is quite worrying, but at least there are checks and balances in place to make sure that everything worked out in the end xx