I am home for the night! This is a mixed bag for me, it is the first time I have ever left him on the ward, and the first time his Dad has stayed with him. It's not been an intentional thing, just the way it has always worked out. So I am home, with my gorgeous girls for the night. Little Rosa sang to me as I rocked her to sleep 'let it go, let it go' and now Anouk is staying up late (she needs some special Mama time) and we're watching... Yes, you guessed it, Frozen. I am both delighted to be home, and yet somewhat sad - I think I need to learn to let it go a bit too.
The good news is he is feeling OK - the physio's have him in the gym daily doing all sorts, we fill our days with giant chess and connect four in the hospital garden, super mario and endless nebs, IV's, and physio. We have both made friends on the ward, and being in hospital is always hugely humbling. We come away feeling very lucky for our lot.
The bad news is, his cough is about the same, and his lung function has dropped again. Damn it. Early days. He may be started on steroids if there is no improvement soon.
This admission has been unusual for us. In the past we have stayed just a day or two, before going home, where I complete the two weeks of IV's at home, with community nurses input where needed. It's only been when he is very unwell where we have had to stay in longer. This time they want him to stay in for the first week or so, which we were not expecting. They are trying both intensive physio and hypertonic saline, both of which we can do at home, so hoping we can get him home soon. I have refreshed my IV training (he has a PICC line in, which can be a big infection risk, so we have to be super dooper sterile in mixing up and administering the drugs). We just want to get him home now. Better sleep.. Better food... Our family all together.
Being home without him.... Just feels, wrong.
I made it home from the the hospital in ten minutes. Which tells you two things; we are very lucky to live so close to an amazing (CF Specialist) hospital, and that when I am tense and need to see my lovely girls, I may speed.
Things that I have learnt (again) this week; My boy is so brave. Hospitals are crazy hot. Every hospital hour = three normal hours. Children's wards are not for light sleepers. People can be so lovely.
When I ask him how he feels about staying in, he said it is OK, painful, fun, tiring and good for snacks (as well as three pretty good NHS meals a day, his dietician drops off extra snacks as he need to up his weight... This and the Costa hot chocolates and M&S extra breakfasts, which are costing us a small fortune, keep him very happy). He is not unhappy about missing school either. Yet.
Hoping for better new to report soon. I'm sure we will x
