We are finally back on our normal ward, which is good; feels kind of like home. The treatment remains exactly the same (IVs, steroids, lots of physio and O2 supplementation), but we don't need 121 nursing care right now. His sats are still dipping all the time, but more stable on less oxygen than they were. He is hooked up to monitors 24/7 too.
I had hoped that getting back to the ward would be a celebratory moment for us, that he would be feeling so much better, but sadly not. He still has fevers, vomiting, chronic nausea, endless coughing and becomes easily breathless just getting up on his feet (even on O2). In fact today he says feels no better than when we first came in. He is pale, losing weight fast and like me, has dark ringed eyes. We have a wheelchair (a first) although we are trying to get him to have a few steps each day too. Pushing him down to lung function clinic earlier, holding his portable O2, it was hard to believe that just 12 days ago he walked 16 miles on a school walk. Now simple things like going to the toilet, or washing his hair becomes a feat in itself. Nurses keep asking us if we have O2 at home... so suddenly that seems like a possibility longer term.
The fact that he is still so poorly has surprised us and the doctors, usually 9 days into IV's he would be much less symptomatic and we would be doing home IVs. The plan is to continue as we are for a few more days before reassessing. If he is no better then, the treatment might have to change. At the moment the assumption is that this is caused by a flare up of his normal PseudoA infection. But it is possible that something else is lurking too, and the lab hasn't yet picked up on it. He is still too sick for the CT scan which would tell us more, so this has to wait. His lung function today was terrible (17%), lower still than last week, but we have to assume this is still somewhat meaningless, as he is too sick to even do the test well. Nevertheless, it is an obvious indicator that he is no better. Going home anytime soon isn't even a possibility.
Neither Dan or I are able to work right now as we need to be here all the time, as well as attempting to be halfway decent parents to the girls. To say Rosa is acting up is an understatement. She just isnt old enough to understand or process everything that is going on, and she and Isaac are very close, so we understand, but when you're tired and stressed, it's hard to not lose patience when she purposely throws cereal all over the sofa or refuses to wipe her bottom. Things like money, how work will be about my absence, the school he is missing, and the homework the girls just aren't getting done because we haven't checked their books are all worries for another day.
I'm so tired I might actually pull down my bed in a minute, climb in and rest my head on my plastic coated hospital pillow. Poor Ise is already asleep. It is 17.20. I dream frantic, vivid dreams, wake up on edge and then seem to stay there all day. Good night all x
