We are home! For the weekend at least. Not much happens on the ward over the weekend. Physios come less. Doctors make few decisions without a consultant, so it always feels like limbo time. Therefore we’re allowed home on IVs again. Either until next Thursday, when he will be reviewed in clinic, or Monday if he becomes any less well.
His blood infection markers are at 80. Compare this to Black October, when they were over 1000. This is GOOOOOD!
Although we got home at 3.30 today, he still needs to be back on the ward at 8pm for a blood test (they have to regularly review the antibiotic levels in his blood, as too high risks kidney, liver and hearing damage). Still, should be a flying visit.
Isaac is very tired following a sleep free night on the ward and needs to catch up.
His lung function today was no better or worse than when he started IVs on Monday. But worryingly he continues to cough, rattle and roll; a lot, and struggle with exercise. This is not necessarily unusual though, just five days into IVs, and hopefully we will see a big improvement over the next week. And despite him seeming more symptomatic (coughing up lots of gunk) his LF was nowhere near as low as I had feared to begin with.
They have confirmed that once well enough they will do a three-day continuous blood glucose monitoring for him, to properly access whether his is diabetic too now. He is drinking about 8 litres a day right now, which is not a risk, but could be a sign.
We’re still waiting for other test results. Frustrating as we can’t be sure until then that he is on the correct antibiotics. But this is not because of any kind of tardiness, it’s simply that his sputum cultures need time to grow in the lab for them to identify what exact bacteria he is growing.
We’re so so glad to be home, but going away on holiday won’t be a sure thing until we know how he is/what he is growing in his lungs. We won’t know for certain until we’re just about to leave.
Anouk says things like “why him”, “why us” as she struggles to understand (she is, by the way, the kindest, most empathetic kid you will ever meet). Tomorrow I should have been dancing along to Patti Smith at a festival, but won’t be as I need to be here. But why not us? And above all, we are a team. I will never let him do this all alone.
