“You can't whine and bellyache because somebody else got a good break and you didn't.”- John Wayne

October 4^th: I hate the stupid Si-pap mask that Duke has been wearing. I hate it I hate it I hate it. It alarms all the time: when he sneezes, when he snores, when he exhales through his mouth. The alarm is triggered when the seal around his nose is broken. I swear I look at the darn thing and the seal breaks. The nurse and the respiratory therapist and nurse both hate the machine too because they are the ones who have to turn the alarm off. At one point the nurse was in the room with me and the machine went off back to back 5 times without anyone touching it just because Duke was snoring. It also does not allow me to see Dukes face and makes his eyes swell because it is so tight on his face. Hate it!

            During rounds today the nurse, respiratory therapist and I all said something about the machine. The doctor in charge of rounds agreed we would go back to the original machine (Vapo-Therm) for a couple of days to see how his CO2 numbers are and to give him a break from the machine since it is alarming a lot and when it does it pauses (which does no one any good).  They are going to rotate between the two machines in hopes of getting Duke to regulate his breathing to be less shallow.

            I also talked to the doctor about when they are estimating Duke to come home. He said we are looking at a couple of weeks because the big thing is getting his lungs strong enough to get off the machines. From there he can start working on eating, but he can always come home with the feeding tube in his stomach and we work with an occupational therapist to help him at home to learn to eat (and teach us to help him learn to eat too). It is just amazing that it all depends on Duke about how he is doing. For once it is not something I can help with or influence. All I can do is kangaroo time him to give him comfort and love on him. I will admit to liking the Vapo-Therm ventilator because it allows me to be closer to him during our time together and the machine is quieter. I haven’t been able to touch his head for a week.

            I know this is a little bit of a whiny post, but all in all I am grateful for where John is and that he is getting better. My son doesn’t require one on one care, he doesn’t have cancer, his heart is SO strong and we have had good lung X-rays. It’s just rough when you can’t control anything.