May 25:

Q had some set backs this week.

On Wednesday the 19th his fever spiked (to about 104). They did a series of CT scans to figure out what was causing the fever. Found a couple things:
1) Even though he had been doing well with the standard respirator, there was a lot of build up in his lungs. Apparently having stuff in your lungs that you can’t clear yourself means that the lungs are partially collapsed, so it’s been referred to that way too.
2) Some small blood clots had begun to form in his lungs. While this isn’t a good thing, it’s a very common occurrence when you’re on your back and inactive for this long.
To address these issues they did a series of broncoscopies, put him back on the VDR (the stronger respirator), and started him on two broad-spectrum antibiotics and a strong blood thinner.

The chest infection turned out to be staph again, so within a couple days they took him off the broad-spectrum antibiotics and started a new, targeted one (that’s different from the last cycle, since that irritated his skin).

Very early Monday morning (the 24th) his night nurse found that his pupils were not responding as they had been. She immediately called Dr. Chen (the neurosurgeon) and he called Dale and Beverly in to the hospital to approve another surgery. There was some bleeding and clotting in his cerebellum, likely caused by the blood thinner (which they immediately stopped giving him). Dr. Chen was pleased with how the surgery went, and said the cerebellum is “very forgiving.” He placed one of the drains back in Q’s head to relieve intracranial pressure, and the ICP numbers have been good ever since. No word on how long the drain will need to stay in.

He was sedated for the first 24hrs after surgery, but had his eyes open earlier today. He’s moving his head quite a bit, especially when someone touches his face. From what the doctors and nurses are saying, even though there were some scary days this week, it’s very possible that he’ll be back to where he was last week within a few days, and we just have to hope the next steps move him forward from there.

May 18:

For some time now they’ve had him alternating between a standard respirator and a more intense one called a VDR. The intense one was to help agitate the gunk around his lungs that he can’t get out by himself, so the broncoscopies and trach suction can clear as much out as possible. It sounds like, with the help of antibiotics, he’s beaten the infection. He hasn’t had a broncoscopy in several days and he’s been on the standard respirator for the last two days: all of this is good.

His fever has been up and down; most likely because of his body dealing with those lung issues. When the temp goes up they treat it with Tylenol and ice packs, trying to let his body do as much of the work as possible.
They did a spinal tap (yes, really) over the weekend to make sure there’s nothing unwanted in his cerebral-spinal fluid and so far the tests have all come back ok. They’ll keep watching that as we move forward.

Like I said, we’re really just waiting at this point for him to give us new signs of patching himself up. This could go on for a long time, so we’re hoping he’ll be as phenomenal in beating this as he is in most things in life.

May 12:

He's still in a coma, though making little signs of recovery from time to time. The drains that had been placed in his head to relieve pressure on his brain are out, which is a great step, and the CT scans show that his intracranial pressure has been stable and normal since then. He's still on a respirator, which is why he's still in the ICU. Because he doesn't have a reliable cough reflex he has to have regular broncoscopies (sp?) to clean his lungs out. He's had an on-and-off fever as his body fights minor infections - they know he's dealing with staph but that's something they can monitor and treat with antibiotics. The worry with infection is the possibility of pneumonia - as long as he's on the respirator there's a higher chance of infection, but they need to see steady coughing and breathing to get him off the respirator. A bit of a catch-22. He's shown a few cough responses, so we're hoping he's progressing that way. The infection risk is the main reason why we can't invite people in to see him. He moves his legs and feet quite a bit; arms, shoulders and head sometimes too. He opens his eyes sometimes and seems to track faces occasionally, but I really don't know how much of that is reflex and how much is him actually looking at us.

The doctors have said that now we all have to have patience because it's a very slow healing process. Weeks and months, they say.