I am with my boy, and I miss my girls, my dog, the cosy life we have made for our family in our little cottage. Dan comes to my rescue, but then it feels wrong not being with Isaac. He is brave, and he is brilliant company, but he is also at times angry, bored and frustrated, and it's me he lashes out at. Because that's safe. Unconditional. And I know this, I understand. I understand him. But it's still hard sometimes.
CF affects all of us, Anouk especially gets very sad when we have to stay in, and she's beginning to question why the poorly looking kids get to go home, but Isaac doesn't ('Is Isaac more sick than them?' She asks).
Midweek it looked possible that we would get to come home early to finish the course at home. I've retrained, so I am all set to do his IVs myself, but his test results just weren't good enough. As much as we tried not to get our hopes up, we did, and it was a big disappointment. Then we were told he might even need a third week of IVs, which he has not needed in years (two weeks is the standard length for IV antibiotics). We agree with the plan, which is focussed on getting his lung function up as much as we can, but it's tough.
This weekend he has been allowed home for the day inbetween IVs. Tomorrow we are back on the ward full time to resume the extra physio sessions too. Last night he was up until 4.30am doing his IVs which had been due at 7pm. His longline had blocked, and he has another's cannula in his hand now. They will try and rescue the longline again tonight, otherwise he will have a new one tomorrow morning. He is looking increasingly pin cushioned, and the cannula (in his hand) limits him much more than the longline (in his arm).
On the plus side, we escaped for a few hours the other day and we had some fun, and the Christmas Spirit came to the ward early this year, when every child was given a book on Astronomy, a piece of Meteorite, and a Telescope. Amazing.
He is getting better, just not quite better enough yet. Merryness will resume shortly x
