T turns blue and I blink

Thanks for all the well wishes! They definitely help.

When I got to the hospital, C told me that not doing well meant that his fever spiked and he started shivering, and his blood pressure plunged. First his feet started turning blue, then his body turned this mottled color. The resident put a bag mask on him and started puffing. C said she looked overwhelmed. Then she said "I'm going to call a code. And all sorts of people are going to come in. Don't worry." She called the code and some people rushed in. C thought "this isn't that bad." Then more people rushed in and filled the room. They put oxygen in him, and a drug to increase his blood pressure and he stabilized.

Sadly we saw a slightly less severe episode on Tuesday morning. Obviously we didn't know his blood pressure had dropped, but we both knew something was horribly wrong. I was about to call 911 when his colour started to return. I don't think this made it any less traumatic for C since he saw the whole thing again and it was worse. But looking at T lying sleeping peacefully, it made me feel better because he came through that time on his own and worse, because I could imagine it pretty clearly in my mind.

It's funny how I'll say "Oh I think it's a viral infection." or "He just misses his doctor." but then my actions reflect the actual situation i.e. that this is an urgent life-threatening situation. Like I called the Hemo clinic and spoke to his doctor who said to give him ibuprofen and wait an hour. Then called back after he turned blue and left a message. The nurse who heard the message understood exactly what I was describing. She told me "Based on what you said, you need to take him in right now." But his doctor didn't hear the message and said I could take him to the Hemo clinic or his ped. I was very clear that I wanted to take him to Hemo, even though if it was just a viral infection, he should go to his ped.

There's a part of my brain, the mother intuition part that understands exactly what's going on. But it doesn't tell the other parts, because it would make it very hard to remain calm and do what I need to do.

C and I both just read Blink, which describes how people "thin-slice" i.e. make a judgement based on a very small set of initial data. The nurse "thin-sliced" based on my phone message And I definitely "thin-slice" with my kids and act on it even if my more conscious brain is telling me otherwise. I didn't even know that I was deciding whether or not to call 911 until I talked to his hemo doctor yesterday. And if I had dialed 911, I'd have found myself calling with no conscious thought whatsover.

I spent the entire day with him. I didn't get home until almost midnight. He's definitely weaker and more pale, but he kicks his legs a lot more now. He used to just lie there and scream. He slept a lot. I tried to prevent him from playing with his Broviac and his monitor wires. We played some games of peekabo when he was awake and he played with his toy.

The Hemo/Oncology doctor who's responsible for the unit came by and said the words "out of the woods" "life-threatening" and "sepsis". I'm not sure if they wait to use the words "life-threatening" until after the crisis is over, or I just don't hear the words until afterwards. I think it's the former, because it's obvious that if someone's in intensive care that they have a life-threatening condition.

At 11pm he "graduated" to the step-down unit, which still has a 2:1 nurse to patient ratio, and is still intensive care, but not quite as intensive. But first he got transferred to a treatment room, because they ran out of beds. The nurses said it must be the full moon, because they suddenly had 3 unexpected PICU cases.

His minimum stay has been extended to at least a week.

C's at the hospital now and says Little T started smiling again. Of course this is a guy who smiled in the ER when his Kasabach Merritt Syndrome has returned. But still it's a good sign. I'm exhausted and supposed to be resting, because we have learned from hard experience that we have to take care of ourselves when he's in the hospital, or we get sick. But I did want to get this all down first.