Listening to Keflex

Dayssi's UTI appears to be on the way out, no match for the Western medicine being practiced at LCPH. I have to say, this experience is having quite an impact on my appreciation for what can be accomplished with some hard science and the use of pharmaceuticals. You start to feel like the doctors can fix anything, which I guess explains Dr. Dahl's swagger. I wonder how many children he has rescued from the brink of oblivion.

I am also reassured about the critical role of psychology in all of this, particularly in Dayssi's illness and treatment. Her discomfort, so far, has been all about feeling out of control. It is the only part of this (besides the series of pokes she received in initial emergency room visit) that has really bothered her. Jim and I are teased often about the plight of our poor children, having two psychologists as parents, but I am so glad right now that we can appreciate the psychological aspects of what is going on. We try to manage her expectations and give her choices whenever we can, and it really seems to help. And sometimes we just refuse to do what makes life easier for the doctors and nurses when it makes life easier for Dayssi. For example, we now refuse to put Dayssi in hospital pajamas because it freaks her out. She goes into the OR either naked, in a diaper, or in her own pajamas. The doctors are pretty understanding about this in general, the nurses are not always as easy going, but we are now insistent about letting her choose what she wants to wear. And typically, she rides happily into the OR on her gurney and sits quietly with us until she is asleep (usually they let us go in there with her, depends on the procedure).

We spent a good part of every single day at the hospital last week, between Dayssi's routine stuff and then treating and checking up on her infection. The oncology clinic is very aggressive about everything and I like it. After our emergency room visit I called to check in with our nurse practitioner and, even though Dayssi's counts are normal, they brought us in for a bunch of checks just to make sure the UTI was the only infection in Dayssi's body. Her little PORT has been getting a serious work out. It frightens her to have it accessed but it doesn't seem to hurt, at least not when we can get the anesthetic cream on early enough (an hour is good, less than 30 minutes not so great). They tell me in the oncology clinic that after a while the kids are entirely unaffected by having the PORT accessed. I'm looking forward to that.

We're doing ok with the new drugs but, just like our first venture with the steroids, the pattern with new meds seems to be, initial curiosity and acceptance, followed by rage, fury and resistance to the point of having to be forced, to finally finding a bunch of ways to feel in control of the situation and then accepting the meds as a necessary but only slightly annoying part of life. It can be fun to watch how resourceful Dayssi is in terms of her ability to gather her wits and figure out how to feel like she is choosing to do this. She is very deliberate in her choices of who will give the medicine, in which room, with which kind of dropper (right now she is hooked on a teeny tiny dropper from a bottle of infant tylenol which takes forever to use since we have to fill and refill it many times to get her a single dose). We are struggling with the pill, which she only took in pieces twice. We are now crushing it and mixing with cranberry juice concentrate, but it tastes gross even with the concentrate and the more you add the more she has to take. Tomorrow we'll try what the pharmacist recommended, which is to crush the pill with a drop of water in a spoon, then add just enough syrup to fill the spoon, suck it up in a dropper and try to administer in one squirt. I don't think the baby dropper is going to do it, but we'll see. She might come around to the idea of only one squirt.

We are seriously sleep deprived right now. Since Wednesday there have been a lot of hours every night that both of us have had to be awake. While Dayssi was feverish she woke often, uncomfortable, but didn't want to take any Tylenol (which she used to love). And we've had to wake her to get her to take her antibiotic too, which you can imagine is really fun. Sometimes it takes over an hour just to get the Tylenol in her, before the antibiotic, including watching a movie on Jim's portable DVD player and spending time in three rooms. BTW, for any of you whose kids don't like to take Tylenol, Jim bought some little dissolving tablets today and Dayssi liked them alot. If they are like the anti nausea meds she takes they dissolve in like 3 seconds. As she says, "It disappeared!" Anyway, we are hoping that with her UTI clearing things will fall back in to an easier rhythm. But we also feel like we are getting a realistic preview of what much of the next 3 years might be like. It was very hard this week, and she was actually in pretty good condition, relatively speaking.

Blah blah blah. That is the latest. A few words here about India: she is doing ok, worries about Dayssi with all the crying at medication time, but it seems to make her feel better when she can offer Dayssi something she wants.

Speakinawich, she is on my lap waiting for me to read her some books. Gotta go.