Well, don’t say they didn’t warn us that there’d be ups and down and good days and bad days but I definitely don’t recall anyone saying anything about nightmare weeks. And that’s exactly what this past week has been.

It started last Thursday with Savannah’s breathing deteriorating and her going back on the ventilator.  Then came the infection and the dicey weekend when I actually thought we were going to loose her.  By Tuesday things seemed to be improving and we had a good chat with the consultant about her recovery from the infection and the plan to wean her back off the ventilator.  And then Wednesday came along and a whole host of new and seemingly unexplained complications came along, causing all sorts of worry and uncertainty and resulting in more elephantine size doses of sedation once again to try to calm poor little SJ down.

Today (Thursday) didn’t start a huge amount better with no real improvement overnight but at least things hadn’t slipped further backwards either. There’s a lot of mention of chronic lung disease at the moment and although this sounds worse than it is and is commonplace in preemies,  Savannah’s appears to be worsening, rather than improving.

A few positives today tho. .. First off, she had her first eye exam this morning and so far all seems Ok with her eyes at least.  If only her eyes could show her little lungs the way to do things!  And then,  this evening, the smallest glimmer of hope with her lungs.  Far too soon to jump with joy and the docs are still threatening to implement their backup steroids plan but after the grand rounds this morning, the docs decided to try something different with Savannah’s ventilator settings and early signs seem to showing that she’s responding in the right way to the change. Short, layman’s version is that this new setting kinda continuously vibrates air into the lungs instead of blowing it in in breaths like we do ourselves. This is gentler on SJ’s poorly little lungs, less likely to damage them and as well as reducing the number and depth of her desats, the x-ray done shortly after the change in settings showed a marked difference.  Seemingly cloudy lungs on x-rays = bad, clear = good, and after the last few cloudy ones, things were starting to look clearer on the latest one.

There’s still a whole host of test results to come back for another infection or a virus and there’s still a long way to go to getting even close to finding a way or out of the woods but we remain optimistic about this latest teeny improvement.

That said, the time finally came this evening for the doc to have the long awaited steroid conversation with us, that they’ve be threatening for some time now but putting off in the hope of avoiding having to have it. Whilst plan A remains for SJ to do this all on her own,  time’s running out for her to prove herself and steroids may end up being her best chance of beating the lung disease and getting off the ventilator. The problem with steroids tho,  as “the conversation” reveals is that they could have a long term neurological effect and potentially increase SJ’s chances of cerebral palsy.  Turns out that premature babies are more prone to this in any case but there’s evidence to suggest that high doses of steroids in the first few weeks of a babies life can further increase the risk. The good news is that they now know this and no longer give out high doses and also that at the ripe old age of 4 weeks, SJ would be at less risk than in the first week or two, when the risk is that much greater.   The other good news is that, once again, the chances of success are in SJ’s favour and the most likely outcome is that the steroids fix her lungs, the docs aggressively wean her off the ventilator once and for all and there are no long term side effects. But does that stop us worrying about the “what if” scenarios of the possibility that our odds don’t come in this time?  Not in the slightest…once again a whole new seed of worry has been planted and is growing like an unwanted ivy plant.

Hey ho, we may never get there with the steroids tho and if we do, there may be  no short or long term side effects so it’s time to hang on to one of the fave icu clichés of taking it one day at a time. So tomorrow’s another day and fingers crossed she keeps making gradual teeny steps of progress overnight and let’s see what tomorrow has in store.