Yesterday was a relatively uneventful day for Will at the hospital. He had the broncoscopy in the afternoon. It was 4 hours late, which meant he was NPO for almost 20 hours, because they don't let you eat before or for 2 hours after. He had a fever last night and required oxygen. Neither of those are unusual for him after a bronc. He hasn't had a fever since (so far!) and his oxygen requirement is decreasing.
Today results from some of the tests have started to come back. Negative for c.dff. That's very good. Detected both CMV (cytomeglovirois) and aspergilus in (I think) the sample collected during the bronc. This is both very distressing and normal. Will always has at least CMV shell vial in his lungs and almost always cultures aspergilus. As we have learned the hard way in the past, the trick is getting the docs to really look at the results and thoughtfully consider whether there are active infections or not, so Will gets needed treatment and can avoid unneeded treatment, especially of the time that wipes out his already suppressed immune system. In the meantime, Will is quarantined because of the CMV results (whatever they are) and that is a pain, and scheduled for a CT to check for active aspergilus infection. (I hate all the CTs and worry about secondary cancers from radiation in a disproportionate way that must be displacing some stronger emotion.)
I talked to the medical doctors on the phone, but before the test results had started to come in. Their read at the time was: not obviously getting better yet but certainly not getting worse. The pulmonary doctor has so far declined to call me back after 2 pages. I'll try her again in the morning and if I can't get through, I guess I'll drive up and see what I can find out in person. Will reports that he thinks he feels slightly better today, so I hope that's a good sign. They have him scheduled for picc line placement tomorrow, which also might be a good sign that he can come home and continue treatment here soon. I am hoping he has a peaceful night, free of fever.
(PS: Are you out their pulmonary doctor, sharing the universe with me? I think that ignoring worried people is a very thoughtless thing to do. It's not like I call and bug you all the time. I waited until I knew the test results were coming in so we could have a real discussion. I bugged the medical docs first. Unless you're assisting with a lung transplant (and you're not a surgeon), attending a dying person, or having a baby you should call me back. I carried around my cell phone even into the bathroom all afternoon and hung up on a client when I saw a number I didn't recognize that I thought might be you.)
4 comments:
Oh no, I am sorry to hear about this!! I hope that the pulmonary doctor calls you back! Let me know if there is anything that I can do. It is much shorter drive for me...I can go and hunt her down for you :)
Take care and please don't hesitate to call!!
Lisa
Oh sweet E, I was not keeping up and missed the past few days- gosh darn. Ok then, so, Will feeling better? That is a great thing. Even incrementally. I cannot imagine having to learn and know all that you have learned and know-- which tests, which results, which treatments. But I also know this is so much about management, about amelioration. But the doc not responding? No excuses really, if she is not available, then she should have someone else cover, unless her battery is dead on the pager. So that makes me angry and frustrated on your behalf.
I also totally get worrying about THAT because worrying about THIS would feel too much like drowning-- so your CT scan concern? understandable to be sure.
sending love, and hopes for clarity, a plan, and a quick recovery for Will,
xo
Kate
Well, I am gonna find that doc and kick her arse. What a heaving cow !
Glad Will may be coming home soon. I hope you are getting some rest and care yourself. Wish I could send you some flowers and a foot massage thru the coments page. Thinking of you both
I know you are have faith so may God bless you.
Eb
Hi
just checking in. How's everything going? Hope Will is on his way home
EB
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