Who needs answers

ok, so a couple of updates.

regarding the CT scan from monday, the pulmonologist's nurse called saying that dr nichols would like to meet us and set up an appointment for another bronchosocopy. this does not entirely thrill me. i'm not sure what he's looking for. but i guess he will tell me this in the preceding appointment. it means, most likely, another IV put into him. i feel like for every IV, drug, or medicine that Isaac receives he is set back a little. his lungs were way louder yesterday, a day after the CT scan, than they are today.

regarding the blood that was sent up to dr ochs. yes, i think this guy's really brilliant in his field, but he and his lab seriously need to get their act together because they seem to lose blood. i am betting they misplaced my blood i gave them in november. and as for the blood that was drawn from isaac on february first, dr ochs had no idea about it; he was sure the nurse who drew the blood delivered it to the wrong lab. when i talked with the nurse she gave me the address and fedx tracking number which all went to dr ochs lab. go figure. i call him back up and talk to some lab guy who says, 'oh yes, we received his blood february the 2nd'. ok. great. dr ochs calls later to say that his lab didn't run that sort of test (the test that would do a count of the different type of lymphocyte cells). ok. great.

anyway, i guess the tentative plan is for us to go up to seattle on tuesday. take some blood, run some tests, and have isaac take a serum containing the benign virus which will demonstrate, hopefully, how functional his immune system really is.

and figure out what's going on with his lungs.

i swear, isaac's just gonna get better on his own without any of these doctor's help. that's my feeling.

CT scan

Yesterday, Isaac underwent a CT scan. We hope to hear back the results today from Dr. Nichols. So here's where we are at thusly:

Two weeks ago we drew 5mls of blood and sent it up to the children's hospital in seattle to dr och's lab. we have yet to hear the results of these tests. my understanding is they are counting his Tcells with certain proteins like CD3, CD4, etc.. there were a whole swath of them dr ochs wanted to look at.

Last wednesday we visited with a pediatric cranio-sacral chiropractor. i thought she seemed quite good. she moved his skull bones around and that was kinda trippy. i could see isaac's eye become more or less squished as she moved the bone that makesup the forehead. she would touch him here and there along his spine, hips, scalp and sometimes he'd end up shuddering for about a minute as tension released from him. isaac didn't seem to mind too much. she also did a couple of adjustments on his back which left him screaming. i hope that those were not adverse...

Last Friday we visited with paul miller an osteopath in lake oswego. we visited with him for 3 hours. the first hour i gave him a complete history. and the next two he gave isaac gentle pressures here and there, along his hips, back, ribcage, shoulders, neck, scalp...he said isaac's legs were different lengths (not really, but that his hips were out of whack giving the effect that one leg's longer than the other) and that perhaps this was related to his diaphram tightening (making him grunt) and this was a result of his lung distress. or perhaps his hips and diaphram strangeness brought on the lung disease... hard to say, it's a chicken and egg problem. anyway, his approach is real gentle and he wants to work on isaac for a few weeks to see if he has an effect. so we're going to. we're not going to resume seeing the chiropractor until, maybe, after the work miller does. doesn't make sense to be seeing two different folks who are doing similar work. plus i feel like miller's approach is gentler.

well, hopefully we'll hear some informative news from dr ochs and dr nichols this week.

my dear little boy

he's asleep on the pad surrounded by his toys. zoe's asleep behind the lazboy chair. i just wanted to list a few things i rather enjoy about my boy:

1. he loves to suck on tags -- you know, the sorts of tags you might find near the tail on a stuffed animal, or the inside collar of a shirt. he fingers them. and then he puts them in his mouth.
2. clear rubber tubing -- he goes gaga for these! 'course he's used to seeing them around for the past several months as these clear rubber tubings are used to give him supplemental oxygen and for my breast pump
3. he cries when robert blows his nose -- something about the noise scares him. and when i was making pesto in the electric chopper, tonight, he began to cry. it's a pretty loud noise. and his lips form the perfect little pout. you can't help but say, "ooh ooh, it's ok little boy, it's ok!"
   
4. sucking on my neck and cheeks. he does this when he's tired. i love it!
5. he gets so excited with any new toy you put before him. i'd love to have such enthusiasm.
6. zoe. he loves her. when she comes in the room, he hears her and stops what he's doing to give her a look. if he's in his jumperoo, he comes to a complete stop and stands at attention, and then he wiggles. and then he screams. a scream of delight, of course.

ok, that's enough for now.

pneumocystis

they seemed to have changed the name from pneumocystis carinii to pneumocystis jirovecii. why? you can read it yourself here

so, i was hanging out at the CDC (center for disease control) website and thought i'd look up pneumocystis, just for a gas. well, some interesting articles popped up that caught my eye. in particular, one focusing on how common it is to find pneumocystis in normal healthy immunocompetent adults, and that perhaps it is spread from person to person. "Our findings may suggest that healthy adults represent a new dynamic reservoir and source of infection for human Pneumocystis species." There are other reports where patients in a hospital seem to have caught it from other patients. In this latter case the patients had undergone kidney transplants. More than likely these patients caught PCP because their immune system was supressed in order for the kidney transplant to take. The genetic strain of the PCP's found in these patients were all the same, suggesting that it can be transmitted from person to person....

why am i writing about this? well, hans ochs has questioned whether or not isaac really had PCP. i have yet to question the pulmonologist on how he made the diagnosis. is the presence of pneumocystis mean he's got PCP? or was it an overwhelming colony outbreak? i do not know. and wouldn't it be interesting if he caught it in the hospital? or perhaps from me? or anyone else?

the fact it can be passed from person to person doesn't really matter. i really do want to know, though, how the diagnosis was made. if he didn't really have PCP, then what did he have?