June 21, 2009 In and Out of it

On Saturday, Joshua’s hemoglobin was 6. Meaning, not enough blood and oxygen. From moment to moment, Joshua’s face and temperature were changing. Pale blue to subtle yellow, rosy/healthy to ringed circles under the eyes. His eyebrows are gone now, and his eyelids are puffy, his eyes are at half mast much of the time. In some ways I feel distant from this child of mine, I barely affiliate or really recognize him in this state, and yet I’ve seen it so often you’d think I’d find it familiar, which in fact I do. It’s an odd experience, one I’ve had many times professionally. Maybe it’s just a natural human preference for healthiness. I don’t really know. Or maybe it’s just the lack of anything substantive to do or say when breathing is the only useful accompaniment. Joshua is babbling funny nothings, and seeing friends who aren’t here. I am washing his feet. His O2 sat is 80. He is seeing double and amused by the range of ridiculous thoughts and hallucinations. I join his self-amusement with alarm …This kid needs some blood, folks. The blood finally arrived mid-day. Two units did not seem like enough, though.

Sunday: We are on day 4 post op, and Josh is doing much better, can hold a conversation that lasts through two exchanges, and is focusing on stories told by visitors, to some extent. His appearance has stabilized more in the healthy range. (Now his hemoglobin is 8.4, which is still very low. I don’t know why they are skimpy with the blood and the various other components that are also low, like calcium. I guess I am used to the chemotherapy regimens, and MDs who try to normalize what can be normalized asap... so I don’t understand the rationale for not supplying what he needs, especially since he’s been through so much chemo…and just had such a huge surgery…) Anyway, The blood transfusion made a dramatic improvement almost immediately in his pain, his O2 sat, his color, his energy, and his mentation. He is allowed to drink water today, and some dilute juices. The water was most delicious.

The pain meds are controlling pain pretty well: the toredal is the most effective and completely eliminates his pain. But it cannot be administered for more than 5 days, and the effect wears off after 4 hours and he only can have it every eight hours. So the rest of the day is suplemented with self administered oxymorphone IV and a continuous anaesthetic into the spine. This makes him loopy and itchy and more out-of-it and not comfortable. He doesn’t like opiates.

He’s been okayed to eat food now. It’s going slow, but his guts are working. He texted me requesting spaghetti and canolis, but at this point I can’t tell whether this is a joke, a sincere desire, or merely poor judgment about what’s the best thing for his digestive system…so I didn’t rush to get the spaghetti and canolis, which was a big disappointment, and Josh accused me of breaking his trust…Daniel says I should remind Joshua that the dog got kibbles twice a day…and that we still have plenty of kibbles at home.

The grandparents June and Jack and Saul came to visit over this weekend: I’m sure Joshua’s color changes and mentation drifts were upsetting, yet Joshua was clearly better on Sunday than on Friday or Saturday, and he was happy to have them in the room, telling stories.

Daniel has come down with some flu, and has STAYED AWAY and not participated so that nobody catches what he’s got. I’m so sorry he spent Father’s Day alone. He deserves some consolation prizes at some point.

This morning (Sunday) before I arrived the docs said Joshua may get out of the hospital on Tuesday or Wednesday. Personally, I’d like to see some normal blood values before he gets discharged. I hope that’s not asking for too much. Any opinions on this, MD friends?