Home is where the heart is...

I really don't know how the nurses do it day by day. As there was talk about letting us go home for multiple day passes through the weekend, we knew we'd be set up with all the teaching required, so that it was safe to go home. We learned about Keian's CVC - how to hep-lock, change caps, emergency training etc. Changing the caps made me incredibly nervous - If the CVC line is not clamped during this properly, he could bleed out. Since he now has the NG tube and basically isn't eating or drinking more than a bird (literally), we also had to be trained on how to keep up with the cleaning and administering of feeds. I was so nervous on Thursday night once we got home, but after 24 hours, I definitely feel more confident. Ryan had an idea for a makeshift IV pole, and I have to say, it worked pretty damn well for the overnight feed. Armed with a full box of pediasure, syringes, sterile water and a tube - my little boy gets his nutrition. It's a very weird feeling. Today, Ryan was feeding Joren his bottle in the living room and I was in the kitchen "feeding" Keian - we had a bit of a laugh!

It's been 4 days since his surgery and he's doing so much better. I asked him today if his feeding tube was bothering him and he said "not at all". He doesn't seem to be favouring his neck as much and he can finally look down at his CVC site - for the first couple days; he would nearly cry looking down at his chest. It's quite a change, but he's happy that he won't have to get "poked" anymore.

His mood flips from one extreme to the other pretty quickly. Today, he was doing his best to dance around to a little song he was singing and a few minutes later he was yelling at us for no reason. He puts on such a brave face almost all of the time and we know how truly traumatizing this all is for him to go through. He amazes me every second with this strength and how he lives each minute without dwelling on his sickness. He is very angry and he has every right to be. It's hard for him to figure out how to deal with the emotions and to even understand why he has these feelings. He's only 5 and he's missed out on so much already in just these past few months.

"Courage is resistance to fear, mastery of fear - not absence of fear"