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Very, Very Sick


This is actually Dave writing. I stayed over last night so Jennifer could get a break.

Jaymun is the sickest I have ever seen him. He gained 4 pounds in about as many days. His face, legs, arms, and tummy are all swelled up. You can hardly hear his voice when he cries. We have to keep pushing the morphine button because he is in constant pain. His breathing is labored and he has to lay still because otherwise his heart rate skyrockets to over 210. Most of the time he groans with every breath.

Earlier today I took a video of him, but posting it here made Jennifer too sad.

The last bad news we got (several weeks ago) was that in spite (or because) of weaning him to prevent CMV transmission he acquired CMV anyway. He has been on several drugs (ganciclovir and Aciclovir I believe) to prevent CMV reactivation Just more toxic drugs for the liver to remove.

And now today we find out that, possibly because of this infection - but probably because of this last round of intensive chemo which included days and days of busulfan and cytoxin, he may have developed VOD (Veno Occlusive Disease). That is where the blood vessels of the liver are constricted or clotted. Symptoms of this are rapid weight gain, liver enlargement, and high billirubin levels.

At 4:00 this morning hey weighed 21 pounds 12 ounces. By 7:45 he weighed 22 pounds 2 ounces. And even though they are giving him drugs to make him pee, his tummy still is swelling up.

They just told us that they are moving him to the intensive care unit.

This would be a good time for some intensive conversations with Doctor Jesus.