Fast forward.....for a moment...

Ok - so whilst this is really a 'historical' blog there may be the odd foray into real-time for relevant updates. Confused?!

Today we had an appointment with Emily's orthopaedic surgeon.

Following on from the clot that I posted about previously, the blood flow in the leg was compromised and it didn't grow properly. By the time she walked at around 18 months it was obviously much thinner and a good bit shorter. She has had very weak pulses in that leg all her life. We had some physio whilst she was small to help with strengthening the muscle and she has always worn a raise on her shoe in order to maintain her back and hips in alignment. Her surgeon was always hopeful that her would be able to level her out by a procedure called epiphysiodesis. The surgery involves putting pins (big fat Frankenstein bolts) in in the leg around the growth plates at the lower end of the femur and the uppper end of the tibia/fibia. The pins restrict the growth of the bone and allow the good leg to catch up. This all went ahead when she was 12 and the pins removed 2 years later.

The upshot of today's appointment was that the wounds are well healed, she's fully grown and is as good as level. Discharged. Success!!

Escape from PICU

Finally we made it to the ward. Not far physically - PBG ward which was right next door to ICU in the old Children's Hospital - but it was a massive step forward and I did finally start to relax a little and believe that I would bring her home eventually.

I'm not sure that anyone would be interested in a blow-by-blow account of the next few months. We continued to have some bad days but they were more than outweighed by the good. Emily had had no proper nutrition during her time in ICU - only maintenance fluids as she couldn't seem to tolerate even the tiniest amount of feed. There was a short foray into TPN but that was discontinued when there was a concern about infection. So she left ICU at barely over her birth weight despite now being around 20 weeks old. She looks so skinny in this picture with Josh. Look at her stick legs! And the bald patch on the side of her head where she had a line in after all her other veins gave up the ghost.

Feeding, putting some weight on, and sorting out her long-term drugs were the next goals. She was still in quite severe heart failure and this was likely to continue for some months at least, still couldn't suck so all her feeds went down the tube and we gradually increased from 10ml an hour to something more reasonable. The feed had so many additives to increase the calories that it was as thick as custard and couldn't be gravity fed. It had to be pumped or syringed via the tube. We were patient though and she gradually gained a little weight.

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.