Well.... where to start......
I'm a mess today. Totally fragile. I'm being such a girl. Rambo looks "better" today. And by saying that I mean only that he is not heaving quite as heavily. He is swollen all over and surrounded by pumps and bags and equipment. They have been messing with his vent all day trying to get his oxygen and carbon dioxide levels evened out. The problem is that he has two different things going on: pnemonia in his lungs and a severe asmthmatic like reaction in his airways. They way you treat the one is not the way you treat the other. In fact, they can be detrimental to each other. We get his oxygen levels looking good and his CO2 goes way up or we get his CO2 down and his oxygen goes down. They are setting low goals hoping to meet somewhere in the middle.
The good news is that they got the amount of oxygen they are giving him down from 100% to 65%. His sats are sitting slightly low but that's the lesser of the two evils for now. He's pretty much completely sedated and I'm happy for it.
They just did a bronchoscopy; thankfully it was uneventful. They had to do a trach change beforehand so they could properly ventilate during the procedure. He was in a tenuous enough state before a trach change, but they took every precaution and it went well. Fortunately, or unfortunately, who knows... the bronch didn't show anything unusal. No inflammation, no mucous, nothing unusual. We were hoping it would give us some answers.... but it didn't. The doctor did get some cultures and we'll see if anything grows out of it. Part of me is happy the other part is a little let down. We're still in square one.
As far as I'm concerned - I'm tired. I fell asleep at 6pm last night. I woke up for a short bit from 9-11:30pm and then slept again until 7am. I think I'm emotionally drained. I feel utterly sick that he could be ill from something at home. I know that it's not our fault. I know that we don't actually know what's causing this. I know that no one is blaming us. I know that nothing comes to us that isn't allowed by God. But I just feel.... guilty, sick, sad..... I'm tired. I've cried several times today. And the only thing that's gotten me to laugh is a botched crossword answer of "spinal crackers". It still makes me laugh.
I'm trying to keep my mind from thinking too far down the road. If/when he gets home will he be the same boy he was 2 days ago? Is this causing permanent damage? Will he see with the same clarity? Will he still be so happy and carefree?
Theodore is in a critical state. The nurse said this morning that he's just stable. I have pictures to put up but my lap top is malfunctioning so I'll have to do it in a separate post. We're still waiting on the echo to look at his heart. We are having our equipment tested to see if there is some sort of mold, fungus, bacteria in it that is triggering this. And then we'll have our house tested... and who knows what else we'll have to do to be sure he is safe when it is time for him to get out of here.
For now I think I'm going to try another crossword and see if I can't get myself to laugh again.