Up and down

Man this is hard!  After my last post, Adam's chest infection got worse again.  They had to put him on a different ventilator, at high oxygen levels and at high pressures.  He was on medication to keep his blood pressure up and was barely stable. They warned us that they were doing about all they could to keep his blood gases (oxygen and carbon dioxide) at the right levels.  If he continued to get worse, there wouldn't be anything else they could do.  It was really seriously bad, but luckily he seemed to rally and by yesterday was stable, back on the original ventilator, and seemed to have passed the worst of it.  When we saw him today, he seemed well, though still on quite high pressures and oxygen levels, but getting better.  His eyes are definitely opening properly now.  His chest x-ray looked much improved too.  Hurrah! 

A chat with the consultant brought us back down again, though.  He does seem that he's getting better from the pneumonia, but the damage that it will have done will mean that he will now have chronic lung damage:  he will be dependent on oxygen for much longer, requiring him to stay in hospital beyond his due date and putting him at risk for long-lasting lung problems.  In addition, his body's response to the infection puts him at higher risk of getting white matter damage in his brain, increasing the likelihood of him ending up with neurological problems such as cerebral palsy and cognitive problems.  Finally, but most immediately seriously, his last x-ray also showed an abnormal bowel, so they suspect that he might have developed the really horrible gut disorder I mentioned earlier.  The problem is that he's already on antibiotics, so all they can really do is add in one more antibiotic and keep resting his bowel.  Hopefully this will prevent the disorder developing but at the very least, he won't get any more milk for at least a week.  He'll really need to get the extra line in that gives him nutrition into his blood (they removed it a few days ago as a potential source of his infection) so that he can get enough nutrition as otherwise that deprivation will also cause him a fresh swathe of problems (he's only getting iv glucose at the moment).  Poor little lad.  It's just so scary and overwhelming.  All we can do is keeping it a day at a time, and hope that none of that happens.  But what do we do if it does?