Long Night

Well, the hope that the stretch of bad days for Elias coming to an end did  not become a reality. In fact they gradually worsened. Elias slept all of 2-3 hours sprinkled through the night. So that obviously meant about the same for us. As much as one of us tried to separate and sleep in another room Elias fussing and crying was too much, both in volume and in quantity. As we said yesterday, it is so difficult to tell what the issue is. We looked at everything last night. Searched for patterns that would occur before the screaming and nothing would be consistent. To make it even more bizarre, Elias is completely fine blowing raspberries and looking around when he is being held. Provided that you are in constant motion, but the moment you stop or attempt to sit down and he begins the fussing all over again. The only things we can come up with right now is that his stool in his ostomy is a bit runny and thin and this started as the stronger antibiotic ended. He is very inconsolable at the moment. We tried having him sleep in one of his chairs, which seemed to work for a short spell. We even changed his trach tube at 4 am this morning just to rule out that being an issue. This is the down side to the transition process dragging out. We do not have anyone (speaking of doctors) to see that can give us a remedy or plan. Of course it is as usual the weekend and Katharine is off, which usually translates into something going wrong as it seems to every time this rare occurrence happens. We could call the FA team, but they will tell us we need to go to the ER because they do not know Elias well enough yet. Things will be easier once we have seen all the doctors, but that is still several weeks away before that begins. in fact we are still waiting on dates from the Aero-digestive team schedulers. They have been trying to schedule us now for going on 6 weeks, if there is a flaw to CCHMC it is the expediency in which the Aero scheduling occurs. Once we are in hopefully that won’t be an issue any longer. Well, back to the Elias duties. Time to start his feeding and medicines. Hopefully, Elias will give out and finally fall asleep.