We have become super saturated with each other. It's been almost two weeks, and we're still not sure when we'll be home. Today he is grumpy and fed up and angry and frustrated and happy and sad and everything in between. I had a little cry in the garden. One minute he is sweet and cuddly, the next he is refusing to come when the doctors ask him to, and yelling at me.
Sometimes it just feels so HARD. The day is one long list of things I have to ask him to do (nebulisers X 4, IV's X 4, physio X 4, clean your teeth X 2, go to hospital school X 1, let the doctors examine you X 2, nurses obs X 4, take your meds X 54, wash your hands properly X 23.....). And I have to do it all with a smile on my face, holding it all together. How can you ask a kid to do all that and not sound like a nag?
The good news is, he has put on 3kg since coming in, which actually makes me worry that he might actually pop. Isn't that how Elvis died? I checked this with his doctors, but they seem very pleased. His cough is slightly better, in that he coughs less often, and is sleeping better. The long line is lasting well, with no sign of infection. And most importantly, he feels OK. (It is very odd being on the ward where kids are coming in seemingly more poorly than your own, but the next day they are the ones going home, whilst day after day, we stay).
The not so great news is that he is still rattley. With physio he is very productive still, and a huff sounds less like a whoosh of air, and more like a chest full of jelly. This doesn't sound any better to me than when we arrived. He is still breathless with exercise.
Everything hinges on today's lung function tests. The bottom line is, they won't let him go home until they have seen some kind of improvement in his lung function. On one hand I am so glad that they are committed to seeing is come back up, and not willing to accept that we might have lost that 20%, but on the other I am worried that we might not see an improvement YET (I'm sure we will see it, but listening to his chest, I'm just not sure it's gonna happen today, and if not today, then we'll be in over the weekend at least. It might only sound like a few more days, but it feels like an eternity to us).
I think now that he feels OK, the only advantage of staying in is the weight gain (not because we feed him less at home, but just that out of boredom and inactivity, he is eating more here). Not wanting to knock anything they are trying to do here, but we were meant to be staying in for intensive physio, but I know he is doing less here than we could do at home. This morning the physio could only give him 5 minutes, and then when I ask him to do more, he argues that he's had all he needs (when I know by his cough, he hasn't). We have half an hour at the gym, but this is nothing compared to the exercise he could be getting at home, even on IV's he could be going on long bike rides. I can do everything at home, IV's, nebs, more physio, that we do here. He is due to finish the IV's in 3 days, but they have mentioned carrying them on for another week. We just really want to see that rise in lung function today so we can do that extra week at home.
I think I'm sounding a bit desperate now, sorry. Our girly girl is crying before school every day, missing me and having the new school term to cope with at a time when she only ever gets to see one parent at a time, and when she does, they're pooped and worried about everything. We miss our family, our home, our beds. It's hard to be positive all the time. Hospital seems to have zapped it all up. Wish us luck.
PS; When I started this blog, I promised myself that I would be honest, else what would be the point? So this is an honest account of how I am feeling right now. This blog is about life with CF..... It is not an illustration of our lives as a whole, so if you find it a depressing read, and I sound like I am moaning all the time, maybe find a blog about cats or something. I hope for our family and friends it is a good way of keeping up with how he is, and that it also raises awareness and funds for CF, and names on the organ donar register. We are currently experiencing a CF blip. Happiness will resume shortly. Have a great day x
