Options now limited

So after a slightly brighter outlook yesterday (Saturday) with the news that the latest chest x-ray was clearing and that the pneumo-thorax had dissipated, we were disappointed to learn that Abigail didn't have a great night into Sunday morning. She was unsettled, didn't sleep much and had another tachycardic (high heart rate) episode. Doctors feel that this may simply be a kind of panic attack over the low pressures on the ventilator; that she is 'fighting' it too much. Doctors felt it necessary to administer a dose of Lorazepam to calm Abby down. Unfortunately this is also a respiratory repressant so Abby's low ventilator pressures went right back up to 16. She was also running occasional temperatures and dropping her oxygen sats overnight, so all in all, we were down this morning and felt that things had taken yet another step back.

No chest x-ray was taken today (Sunday) as doctors decided that any improvement in her lung function would be minimal and that there was no evidence of another pneumo-thorax. Doctors are very keen indeed to extubate Abigail to avoid another crippling infection taking hold. Infections are almost guaranteed on ventilation because of its invasive nature, and the longer you are ventilated, the higher your risk of infection. This afternoon, in an effort to get a real sense of where Abby is on her lung capacity, doctors dramatically reduced her pressures from 16 to 10. This was the lowest she'd yet endured and is approaching the kind of levels required to extubate.

We noticed an almost instantaneous increase in the workload Abby was undertaking to breathe. She was labouring much more, but just about managing to keep her sats up. She lasted around two hours at that level before doctors took a blood sample to measure her blood gases. The results showed that whilst Abby's ability to expel carbon dioxide was actually pretty good, she was simply not getting enough oxygen into her blood. This gave a very clear benchmark for the consultant to say that Abigail was just not ready to be extubated any time soon. Doctors increased her pressures once again to 14 and Abby seemed more settled.

This evening, shortly before Matt came home for the evening, one of the doctors sat us both down to explain the options for giving Abigail some steroid drugs. Steroids can really assist in clearing the lungs of mucus and inflammation in cases of very severe lung damage. Children who are given steroids can often be extubated successfully very quickly afterwards - it provides that last bit of help needed to make the lungs work to their maximum capacity despite their damage. The doctor explained that the medical team felt Abigail had now reached a plateau of reliance on the ventilator where she is not able to cope with the lower pressure required for extubation, and doesn't look likely to be able to soon.

A difficult decision arises because it is perfectly possible for us to leave her for another week and hope that she can be slowly weaned down to the appropriate levels, but this runs a huge risk of infection which may well overwhelm her. Or she simply may not ever be able to cope with lower levels, in which case we are effectively waiting for the next big bug to strike and making Abby work extremely hard in the meantime.

Alternatively doctors could administer steroids and hope that the drugs offer that last bit of help in reducing the inflammation in her lungs and weaning her off the ventilator. But there is always a downside to any treatment. With steroids it's that the drugs dramatically reduce the immune system's effectiveness. This means that whilst the drugs may well help with her lung function, Abigail will almost certainly be even more susceptible to another infection. The dilemma is that steroids now provide one of her last chances at survival and if we deprive Abby of that chance, there's every risk that she would be overcome by an infection anyway if we leave her ventilated for much longer.

After a lot of clarifying questions, we both felt that we wanted to continue our policy of giving Abigail the best possible chance at every opportunity, and so we've decided to start steroid treatment. In fact, Abby has already received her first loading dose this evening. Doctors will administer the drug over 24 hours and they expect to see an improvement (if it works at all) by the end of that 24 hours. An improvement would manifest itself as Abby being able to cope with lower pressures.

If the steroid treatment doesn't work, we've almost run out of options and it would simply be a case of leaving her on the ventilator to see if she could be weaned off in time. We wanted to take a positive step to help Abigail and so we've made that decision. Even if it results in no better lung function and another infection does strike, we hope that we'll feel we did the right thing for Abby at the time. We also feel that there needs to be a resolution to this illness soon - one way or another - for Abby's sake as much as anything.

And still she fights. We've been told this so many times over the last two weeks, but this time it couldn't be more stark: the next 24 hours are critical.