Back to the hospital

Will was admitted to the hospital on Monday and is very sick. We actually went up on Sunday to the ER, but the ER doc (apparently) mis-read what was going on and sent us home. She suspected lymphoma recurrence (so did we) and told us to follow up with the pulmonary/transplant doctors and the oncologists to schedule lymph node biopsies. I was working on that Monday when Will (who was getting worse) went up for a regularly scheduled appointment with his ID doc and was dx with some form of superior vena cava syndrome, basically a series of big blood clots in the big veins in the right side of his neck, and admitted right away. (I think it's not actually, technically, in just the right spot to be SVCS, they have told me at least twice exactly where the clots are but I am not capable of remembering the names of all these vessels and all my brain can do when they start in on that part of it is think -- How do they remember all this crap? And, who cares anyway? Big, big vein in the neck near to/leading towards the heart, that's all I need to know.)

Things have gone downhill since. Will is miserable, in a lot of pain, all swollen up on the entire right side of his head, face, neck, shoulder, arm, hand, chest, etc.. (I don't think it helped that the ER gave him 2 liters of IV fluid in 2 hours on Sunday. . ..) Can't talk really, can't eat well. Can't cough, which means his lungs are filling up with crap.

Yesterday they started making noises about putting him on a ventilator, because of concern that the swelling would start to obstruct his airway. This is still a possibility but hasn't, thank God, been needed yet.

It goes on and on, the normal hospital stuff. A million doctors involved, and since it's a teaching hospital a million and a half student doctors in various stages of training. The current debate: should the portacath come out? Can he tolerate the surgery now if it needs to come out? Is it really the cause of any of this or just a bystander? (The docs have different theories on this.) If the port has to come out, Will basically will have no good access options left. The veins in his arms already are shot from picc line after picc line; he had a port on the other side pre-transplant, so they don't think they can move it there. It's a dilemma. The medical docs in charge of him and the interventional radiologist think we should treat through for a little while and least in hopes the port can stay. They don't think the port has a raging infection in it or that it is the cause of all this particularly. ENT didn't have an opinion yesterday, although they are eager to vent and a little alarmist about the airway. Pulmonary/transplant wants the port out. I don't know what ID thinks yet. And a partridge in a pear tree.

He is being treated for a blood infection. The port may be infected, or the clots(s) may be infected on their own, or the blood cultures might have been contaminated. (Only one of 6 has grown anything so far and it is growing a common skin form of staph; but blood infections are, I've been told in the past, notoriously hard to catch, which is way they keep drawing cultures, so even 1 growing is important, I guess.) He isn't spiking big fevers so that's good and means the antibiotics are working to keep that under control so far. They've pretty much ruled out lymphoma for now, which is nice. What a rabbit trail that was. The lymph nodes are not swollen and he has none of the other markers that were present for his past two lymphomas (EBV spike, fevers, weight loss.) The ER doc apparently just got it totally wrong when she did her specific examination to determine if if was lymph nodes or some other kind of swelling and decided lymph nodes. Bummer.

Will has not yet really started to respond to the treatment they're giving (heparin drip to work on the clots, increased steroids to combat the inflammation, sitting up to encourage proximal drainage). Our job is to hope the treatment starts working to clear the clots, and the work-around veins that are surely growing get bigger faster, and that Will can hold it together long enough to be able get well enough to cough and start to clear his lungs. And that the lungs hang in there too. Honestly, it's a pretty awful situation and it really doesn't convey any sense of it to say that I feel so bad for Will who doesn't deserve this (as if that's a consideration in this universe) and who is tired, frightened and in a lot of pain.