Thursday, January 1, 2009

Some improvement today

A really nice thing happened at the hospital today, the pulmonary doctor covering the service for the holiday was Will’s regular doctor, the doctor who has treated him for something like the past 15 years, since way before the transplant. I can't really say enough about how helpful and reassuring this is to all of us, especially Will who tends to take a little time to warm up to new doctors (and who can blame him---all the questions, all the weird theories, etc.) One of the most frustrating things about the hospital is that on admission you almost never, ever see one of your regular day-to-day doctors, instead you see a series of doctors in training on various services who are consulting with (they say) your regular doctors.

The upshot is, the regular pulmonary service who sees Will all the time doesn't think Will has a fungal infection in his lungs and have discontinued treatment for that. This is very good because the drug for this treatment gives Will terrible headaches and the infections disease doctors were starting to talk about a spinal tap---I know they have to be conservation, but, really, Will can tell them the drug gives him bad headaches, exactly the same every time he has taken it, and these headaches started with the medication. . .still, I understand that it would be horrible to miss something. . .but this is exactly the hazard of massive numbers of new doctors at every hospitalization.* Will always cultures positive for the aspergilus in his lungs because the fungus is everywhere all the time, so just because it's in the lungs doesn't mean there is an active infection.

They also don’t think he has an active cytomeglovirois infection (hooray!) and are working with the infections disease doctors to discontinue the ganciclovier. In fact, all they found was shell vial (dead virus, basically) which is always there, and the levels of CMV in Will's peripheral blood are lower than they have been in the past. This is more good news because the ganciclovier is pretty famous for wiping out bone marrow and Will needs all the healthy blood-production capacity he can get right now, so we have been agitating for pulmonary to weigh in on this and to check the peripheral blood levels and are super happy with the result, first because it means Will doesn't have yet another very nasty virus to fight off and second because the treatment for CMV is so counterproductive if you don't really, really need it.

The current theory is that Will is really sick with the parainfluenza (Which is not the flu, but instead a poorly named virus that causes nasty colds and upper respiratory tract infections in most people, for example, me right now; but can easily cause lower respiratory tract infections in people with weakened immune systems, like Will.) pneumonia and the pseudomonas flair up, but unless something goes sideways (always a possibility) he should recovery fully, it will just take quite a bit of time. (Think: many weeks to be back to normal; although I think they'll send him home from the hospital as soon as he is off oxygen and doesn't have fevers.) So, as silly as it sounds it feels like huge progress to be down to just one type of pneumonia plus a bacterial infection.

Will reports feeling some better today, partially due, I think to them discontinuing the voriconazole, which gives him terrible headaches. When I visited Will was able to talk some, watch television, and eat a (very small) lunch. When I talked with the nurse just now he reports that Will is saturating at 93-95% at 2 l delivered through nasal cannula. So his oxygen requirements are down, which is good. Hopefully he’ll eat dinner and continue to feel better and start to recover.

Liam is doing okay, has a little cough that I may take him to the pediatrician for if it doesn't start to improve. I feel like crap but am hoping this is a short-duration thing and as long as I keep up with the Tylenol and decongestants I'm pretty functional. I've been waking and sleeping in my new hat from Grandma KM and it helps a lot, so thanks mom, you are helping even if you don't think you are. Mollie is going nutso from being inside all day every day, but that's just what happens when Will is in the hospital. She too will recover.

**A note: I understand and actually subscribe at least in part to the theory that new doctors are good because they will be more conservative and may spot things your regular doctors misses because he or she is inured to you and your complaints. But, it has to be a team effort so you don't end up with treatment that you don't need. It sounds like the new ID doctors absolutely could have taken a "wait half a day or so and see what happens" with the CMV and consulted with (either) Will's regular ID doctor who has many times chosen not to treat Will when his peripheral blood levels of CMV are higher than they are now or the pulmonary service, which could have brought the same historical perspective.

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