Frustrated

I'm having an emotionally hard day. Maybe it's due to being so exhausted, I don't know. I'm not getting the sleep I need, I'm not even getting the sleep I was getting before Liam was admitted into the hospital. The new med/feeding schedule is worse. Im up every 3 hours. Sometimes I have to get up just to get up again an hour later because the pump goes off. Liam is cranky and has been whinning and screaming. I took him to his pediatrician yesterday and he's tachypneac again. We're waiting on CCS to approve the payment on his nebulizer since the darn thing cost $70 not including the medicine that does in it. He does better on the nebulizer, his tachypnia goes away. The plan with our ped is to gove him 2-3 days on the nebulizer with the albuteral and if he's still tachypneac we're going to switch his QVAR into one thats nebulized as well then go from there. I hate CCS. If they wait any loger to get us the nebulizer then Liam will end up right back in the hospital. Its frustrating. Id pay it out of pocket if I had the money. He should for sure have it tomarrow...according to the timeline it normally takes for approval anyway. I had bad dreams all night last night. Not about Liam but others. They seemed all too real and I couldnt shake them. And here I was complaining that I didn't have a perfectly healthy son and then he gets worse. Its like God is telling me that things could always get worse and that I should just be happy with what I have. Im not frustrated at Liam nor do I blame him. Im frustrated watching my son fighting so hard to breathe. He sounds like he cant catch his breathe and all I can do it give him his inhailer every 4 hours and rock him. Even in sleep he's working hard. He was discharged sunday and the diagnosis was pnumonia due to aspiration. I keeping hearing how things will get normal after his first year, but even Liam is an oddity among the anomoly of CDH. Everytime I turn around Im being told that Liam is odd, hes noy doing what other CDHers do, that they dont know what to do with him. Its aggrivating to hear that over and over again. I have no choice but to watch Liam struggle while they throw their hands up and shrug. And today my mind has decided to be unco-operative. Its miss firing neurons make me feel like im falling into a black pit even though my body can feel the sunshine. It only means I have to fight harder to get through the day, but its only 1 day. tomarrow will be better.