At the time of going up to PICU, when he was panicked and so breathless that just standing made his heart race and head spin, the staff around us seemed so calm and collected, you're led to believe that this is must be every day shit, and you too should be at ease and go with the flow. This no doubt helps patients and parents keep their crap together.
Now we are back, we're being told just how poorly he was, and how rare this is, even in CF, for a child his age to become so sick so quickly and to need intensive care. Our shock seems more justified somehow. I am still shaking, I can't imagine how he feels (he does talk to me about it, which is good).
It also helps explain (along with the abundance of viral infections he has) why recovery is so slow. He is making progress, but it's so gradual that he can't see it, which leaves him very fed up. Being confined to the room is frustrating as hell. There is little in the way of segments to his time, only day and then night; no change of air as he goes over a threshhold; nothing to change clothes for; no shower; no mirror to see how much weight he has lost (a stone already). He sleeps (a lot), eats (a little), watches his laptop, takes his pills, breathes in his nebulisers, has IVs, endures physio..... Some of which are both day and night; it matters very little what time it is, as we're here anyway. The days all merge into one. The alarms beep endlessly.
However, he is starting to want visitors, he has seen his cousins and a couple of friends, and this has cheered him up. And we have been able to mask him up and wheel him to a garden, to walk a little, get some air. He can manage about a minute of walking now, me carrying his portable O2, holding his arm. You can see how hard each step is for him, his chest heaving.
The meeting with one of his Consultants revealed nothing new exactly, but was very hard: We were asked about our hopes and expectations for Isaac's life; how we thought he was coping; and how we thought this acute episode might affect him longer term. I get that we are likely looking at more aggressive treatment in future (IVs given every 3 months as routine, rather than adhoc when he's more symptomatic as he has now, to keep the bugs at bay better) but we're not ready to accept that we can't get him close to his baseline health again. It's just gonna take time.
We are going away for a weekend soon, and when I reminded him of this, thinking it would cheer him up, instead he groaned and told me he wouldn't be well enough, I let out a little involuntary sob. It's so very difficult as we have no time frame for this; we don't know how long he will have IVs for; we don't know when he will get off the oxygen; I can't tell him when his lung function will improve (the two things we need to happen before we can think of taking him home). But we need him motivated to do the physio which is critical to getting him better - our biggest job now is keeping his spirits up so he can fight this.
At home the girls are unsettled, and Rosa is acting up no end, which is understandable, but exhausting. None of seem able to relax.
I want us all home together, a thousand kisses deep x
