A cuddle at last

Emily continued to give us some scary moments but on the whole began to improve. She did not want to be weaned from the vent though so it was slow going. Towards the end of the fourth week post surgery she finally got extubated and into a 'headbox'. It was fabulous to see her face again without the tubes although she still had her nasogastric tube which was to become almost a permanent fixture for several months. And better still she was beginning to be weaned off some of her drugs. The morphine and sedation withdrawal made her particularly miserable; unsurprisingly as she'd been on it for quite some time. She worried me for a time as seemed unable to focus on anything but that slowly got better over the weeks.

Being able to hold her in my arms was wonderful. If you've ever heard the phrase 'my arms ached for her' then I can tell you that it is almost a physical pain.

Worries averted.

It took some time for her to become settled again - she was having periods of tachycardia and desaturating. They wondered if she'd had a brain bleed and was fitting despite being on full support so there were more tests to endure; scans, ultrasound and an EEG. All proved to be clear and during the next few days she was finally listed as stable as opposed to critical. At last something to celebrate!

My usual routine was to get up pretty early and visit Emily before breakfast, around the time that the staff changed over. On this morning it was my favourite nurse Suzie who was to look after her. There had been concerns overnight as Emily had been very up and down. One of her main lines had 'blown' and tissued into the arm, her monitoring was all over the place and it was noted that some of her old puncture wounds had started to bleed. I was reading through her overnight notes and started to ask Suzie about the fact that her suctioned secretions had been blood-stained - at almost the same moment Suzie had realised that this wasn't just Em being difficult - but that there was something fairly seriously wrong. Things developed pretty quickly, Suzie took down the heparin immediately and called the team over. Her clotting was way off (they couldn't clot the sample at all in the ICU machine and the labs which came back later noted the same) It transpired that the heparin pump had been refilled overnight and because of a lack of clarity in the prescription Emily had been given 10x her normal dose.

It shook my faith quite a bit as you can imagine. But I have to say that it was well handled by the Head of Intensive care and the Head of Nursing Services. They were very 'upfront' with regards to what went wrong and I saw the prescription for my myself immediately after the incident. Thankfully it led to protocols being changed surrounding the writing of prescriptions for that particular drug. I was saddened to learn though that another child died from the exact same overdose following open heart surgery in another children's unit just two years ago. This led me to speak with PICU again recently to confirm that the protocols remain in place.

Taken shortly after the heparin incident. You can see what a state her arm was in.

Life on PICU

The next couple of weeks went by slowly, punctuated by crises. She took it upon herself to let us know when one was approaching - temp and HR would soar, BP and SAT's plummet, usually giving enough time for the nurse to summon enough hands to help 'bag' her through. Around the middle of week three we were moved on to the main ICU ward. We'd been in a little cubicle up until this point and to be out onto the unit was seen as an improvement.

This heralded another of my little enlightened moments (residing in my little self-made cocoon of denial I came to have quite a few) . I'd assumed that we were in the cubicle because Em had bronchiolitis.; it became evident over the next couple of weeks that that wasn't the reason at all. Every patient who went into the cubicle after us died and it turned out that patients were placed there because it offered more privacy for the families who were expected to experience a loss. I am eternally grateful that Em decided that she wasn't going anywhere.

The leg was still giving cause for concern but the heparin was thankfully preventing more clots. However a few days later it was the heparin itself that was the cause of some problems.

A good friend.

I mentioned my friend Caroline a little earlier and I need to say something about her. She hates hospitals - has a real phobia of them - but she was such a support to me during those early days at Birmingham. She put aside her panic to be with me and I can't thank her enough - I don't think I ever thanked her properly. She drove me up and down the motorway when I wasn't fit to do it myself and she even accompanied me on a mission back to the children's ward at our local hospital to retrieve one of Emily's baby blankets. Emily had been sick on it the day she was diagnosed and it had remained under the sink in the sluice room for several more days. She must have thought I was nuts to contemplate a round trip of over 100 miles to find a stinky blanket, but in my odd mental state at the time I just had to get it back. She never once commented on my madness. Bless her!

This photo was taken by one of our fab nurses, Suzie, after she came back from theatre the second time. She covered her with a little dress because her chest was such a mess.

I didn't realise the significance of it at the time - I assumed that they did this for everyone but it was only when we were leaving PICU some weeks later that I understood that they really didn't believe that she would make it through the night.