As I look back on this past week, all I can say is "Phew."
Its not until after the fact that doctors start saying how bad things were. Not fully anyway. We knew things were bad, it was obvious. But doctors begin saying their true feelings afterwards. After the first four days we heard everything from, "He was in the deep dark woods." to "He really scared me." to "He was incredibly sick."
I'm sure that Ben was processing things more quickly than I was. It wasn't really until yesterday that I realized Friday, Saturday, and Sunday they were doing ALL they could for him. They could offer up no more support.
Phew. Rambo is still being highly supported. They are allowing him to wake up more each day. They continue to slowly wean the vent. I wonder if pulmonary will actually consider pressure support at night long term for him yet. We still don't know what happened. We don't know if it will happen again. I don't know how much lungs can put up with and still get back to functioning well; lungs that weren't even the most healthy to begin with. A CT scan of his lungs was done several days ago. They wanted him in a more stable position to do it, but it seemed likely that he had a pulmonary embolism and they needed to confirm so they could treat accordingly. Even though this is highly unlikely in a young child it seemed to fit the bill with the way in which everything happened. It seemed too good to be true that we might have an answer. And it was. Its again one of those fortunate/unfortunate things. They did, at the least, get a good picture of the lungs and it wasn't pretty. Five days into this illness and on the upswing, and he was living off of a small section in the right upper lung. There were places that were not functioning at all- no air exchange whatsoever. It makes me wonder what he was living off five days prior, and shows why he was in such a dire place. They have just today changed his clotting meds to shots. He'll be getting 2 shots a day for the next 3-6 months. They will repeat the ultrasound of his vessels to see if any new clots have formed or if these existent ones have moved. He also gets another echo tomorrow since he is now off all the heart meds to make sure that's stable. Lets hope it is. He amazes me each time I look at him. Each day I am starting to see a little more of the Theodore I know. It's going to be a long road. But I'm so thankful God has blessed us with another day with this sweet boy.