All engines full reverse

Ford has not been doing very well since coming back from the cath lab, but it is still unclear what the problem is.

He's been fighting a fever ever since, which drifts between 40.2 and 38.5. Despite all the tests for viruses and infections so far coming back negative he is being treated with antibiotics, and getting alternating doses of Tylenol and Advil every 2 hours. Yesterday nothing seemed to be bringing him down so we packed bags of ice around his head and stripped him down. After several hours of that it fell to 37.7, which is still on the higher side of normal. The funny thing was that he didn't seem to be behaving in a distressed way. A little fussy, but not much more than usual. Not too sleepy or dopey. He was actually mostly just lying their calmly, looking around, with his head encased in ice. Almost comical to watch if I wasn't so freaked out.

The doctors initially seemed unconcerned because Ford was placed on some kind of heated blanket during the procedure. Also, apparently it isn't unusual for kids to come back with a higher temperature after any kind of operation, their body reacts to the invasion. But it has been lingering like this for a couple days now.

Then they thought it could be a reaction to the dye they put into his blood for the CT scans they did to check their work - but he had a CT scan a few weeks ago and had no reaction then.

Then maybe there was an infection or other trauma in his heart, but echos and x-rays all show his heart as being ok, even better off after the ballooning of his aorta.

Then they decided to draw more blood to test for infection again, after the first round showed nothing.

So we are just waiting and hoping that they either figure out what's wrong and have a treatment available, or that it just blows over and he gets better. But while we do that, Ford is being subject to all the precautionary measures of the ICU. He's got an IV in his foot (which took 11 tries to get), then as a back up they put one in his head, then as another back up, and more dishearteningly as a "longer-term option," they are putting a pic line in his arm. He's been on the high-flow nasal prongs for respiratory support as well. And yesterday, after several bouts of vomiting, they decided to put him back on continuous NJ (intestinal) feeds with an NG tube to drain his stomach. He hasn't looked like this since before we left Edmonton and their adage: "It's always two steps forward one step back" is wearing a little thin with me. He seems to be running in full reverse. This is one of those hair-pullingly frustrating moments to be in because early last week they had optimistically suggested that we would be discharged on Friday. And now they are gearing up for a long-term stay in intensive care.