Isaac is slowly improving we think.
I sat in the garden by the gym earlier while he was doing physio and reminded myself that this is not like ‘that’ admission back in October. Let’s call it BLACK OCTOBER. He is not struggling to walk a few steps in that garden on oxygen, he is not in a wheelchair.... he CAN breathe. It was a timely reminder that things could be a lot worse.
But he continues to cough, a lot. Coughing like that hurts. His throat hurts, his ribs, his back. Only a CF parent will understand this, but I’ve been delighted by the sputum specimens we have been able to send to the lab, the ickiest in a long time - if there is any other shitty bacteria hiding in there, we will find out now, and then aim some big guns at it!
Isaac, as usual, is mostly in good spirits. He had his six minute test yesterday (they test at the beginning and end of each admission how far he can run between two markers in six minutes) and he tried so hard, but was so breathless. The physios have him in the gym twice a day which helps him shift the mucous from his chest. We normally protest to do IVs at home as soon as possible very loudly, but this time, I know it’s the right thing to be on the ward. The team all continue to aim to get him well enough for our holiday, and I’m feeling more confident now, albeit for the test results. I’ve asked about continuing IVs myself in France but it’s not an option, for risk of sudden reactions and being so far from home.
As happy as I am that we should (we hope) get to go on holiday, I’d be lying if I didn’t admit that this admission (after IVs in August, October, January, March, July and July again) didn't worry me. Hopefully the tests he is having this week will help us work out why his lungs are having such a bad time. To put it into perspective, that is six (some very long) courses of strong IV antibiotics a year, when previously, he typically had one to two.
Thank you so much for all the kind offers of help from our nearest and dearest, of which we are spoilt. Good news to follow we hope x
