Deterioration, then a slight improvement

Many thanks to Dad and Kerry for helping update the blog yesterday whilst we were both up at the hospital. We were very keen that people who are kind enough to keep up to date with how Abby is doing were informed of developments yesterday. It was certainly a very difficult day indeed after the apparent improvements midweek.

We both noticed on Thursday that Abby seemed to be working a bit harder on her breathing and she just looked distressed and not right. She often became difficult to saturate, too. That evening, as Dad has recounted, she had a difficult 'episode' lasting about 90 minutes where her heart rate was around 200, her respiration was 75 and her sats were low at about 80. She was clearly in distress, gasping for air and doctors were baffled as to the cause. There was obviously a major problem and over the course of Thursday evening, the joy of Abby's apparent improvements on Tuesday and Wednesday disappeared. She now appeared to be in a critical condition again. Doctors administered a sedative drug to help calm Abby down and she had a reasonably settled night.

As has been written, an x-ray on Friday morning revealed a pneumo-thorax in her right lung, which is one or more pockets of air in that have escaped into the chest cavity because the lung is breaking down and partially collapsed. This can become very dangerous if enlarged and can sometimes incur an emergency chest drain. This was clearly the reason for Abigail's 'episode' the previous night. Doctors opted not to do anything straight away as it can occasionally dissipate of its own accord. Abby's ventilator settings were increased again, she was offered more oxygen and she was put back onto a steady respiration rate on the machine.

Friends and family visited again on Friday afternoon, including Rebekah and Joshua, who we pulled out of school early in order to come and see Abby in preparation for the worst happening. After the news midweek that Abby was making improvements, once more we had to tell our children that Abby was very poorly indeed and that she may die. Becky and Josh were again very upset but they have both been amazingly brave and resilient these last two weeks.

It also transpired that on top of the pneumo-thorax, Abby appeared to have another infection somewhere as she was often spiking a temperature and had regular diarrhoea. When speaking with the consultant on Friday he said he was "very worried" because the situation and chest infection could quickly overwhelm Abigail. He explained that although Abby did indeed make clinical improvements on Tuesday and Wednesday, these were limited to her immediate signs: heart rate, saturation, blood pressure and respiration. She also seemed a lot better in herself because she had come off morphine and was much more awake and alert. Although this was all true, the fact was that during that time, there was actually no improvement in her chest infection at all. We did know this, but were hoping that the x-rays would mirror her bedside improvements later on. It wasn't that we were misinformed, but merely that her clinical improvements never were followed by progress in her lungs. There was also concern from the doctors that many of the major antibiotics had already been used and that a new virulent infection could prove very difficult to stop.

We went to bed last night fully expecting Abigail to die overnight.

This morning (Saturday), we woke up surprised that we hadn't been called up to PICU in the night. Abby had not had a great night, with little sleep and more temperatures and tachycardic episodes. Abby was relatively stable but still breathing fast and working hard for her air. Another x-ray was taken this morning and we awaited the ward round for the latest on Abigail's condition. During the morning we had the opportunity to hold Abby for the first time in ten days, and we both felt that medical staff were preparing us for the worst.

So we were shocked and surprised when we had a long chat to the consultant to hear that some small but significant progress had been made overnight. The pneumo-thorax had indeed dissipated on its own and was no longer an issue. But most importantly of all, for the first time since her admission, there was real evidence of some progress on her lung damage. Her left lung was visibly clearer on the x-ray and the right one was now free of the pneumo-thorax. Abby's consultant said he was "much happier today than yesterday" and said that if the same amount of progress could be achieved by tomorrow morning, then that would be a clear indication of momentum in the right direction. He said it was a definite turning point but was only a start. He also mentioned that the additional infection Abby is harbouring did not show up on blood cultures, which meant that Abby was fighting it off with her own defences.

It's been a real rollercoaster of a week, but the bottom line is that there has been some real improvement in the last 24 hours of so. But the consultant said that this really needs to be built upon quickly. Abby's lungs need to heal very rapidly and she needs to be weaned down on her ventilator pressures quickly if she is to be extubated. The longer Abby stays on a ventilator, not only will it be harder to wean her off it, but much more importantly there will be a much greater risk of further infection. They are almost impossible to avoid with an invasive life-support procedure. The consultant said that if we can get two or three clear days with no more infection and Abby can tolerate getting her ventilator pressures right down, then she will stand a very much greater chance of recovery without the ventilator.

It seems ironic that the thing that exposes the greatest risk to her life in the short term is the very thing that's keeping her alive! If she can tolerate a rapid weaning process, it's possible doctors may try to extubate her on Monday. If Abby remains dependent on the ventilator at her current levels for another week or so, then that would probably indicate that recovery is unlikely.

So after such a low yesterday, today seems brighter once again, if only a little bit. Abby will have to work hard over the next 48 hours if she's to come off life-support. It could be uncomfortable for her. And whilst it's possible that she could might tolerate a reduction in pressure, be extubated on Monday and make very rapid progress from there, it's also just as possible that she may be extubated on Monday, not cope without it and require re-intubation. But doctors won't know until they try. Things really are still very finely balanced, but we're hoping that the genuinely positive progression on her lung disease gathers momentum tomorrow.

More than anything, we'd both like a resolution to this awful time soon. A long protracted recovery is OK, as long as there are clear indications of that direction. What we don't want is another few days (or week) of stability but no progression or regression. Abby doesn't deserve either of those scenarios. We'll see what tomorrow brings.