Deja Vu All Over Again

Well, when I signed off in July, I really didn't think we'd all be getting together again so soon. For those of you who haven't necessarily been in the "loop" for the past few days, let me get you caught up. Besides, this serves as a record for me, too. I'll try to remember the details as best I can:

On Monday, (11/3), Greg called me about 2 and said he wasn't feeling very well. We thought he was just a little tired, as he had painted the kitchen ceiling on Sunday. He called again at 3 & said we had to head home (we had car-pooled), so we left & when we got home, he was running a fever. We continued to monitor him, and at 3 a.m. Tuesday he hit 103. I knew from past experience that it was no use calling the "on call" doctor (when he had pheumonia on 2003, the on call doc told us to take Tylenol. Note: Tylenol doesn't work so great for pheumonia). So I went to vote at 6 and called Dr. Raju (his oncologist) at 8:30, when they opened, expecting her to tell him to go to hospital admitting right away. At about 9:30, the nurse called me back & said they'd called in a broad-spectrum antibiotic & she would see him at his scheduled appointment on Thursday(!). I called Greg's sister, Skibby, & apprised her of the situation. She was very alarmed & said he should go to the ER immediately. Greg was more inclined to follow the doctor's advice, so he sent me on to work. I wasn't comfortable with the situation, so called Dr. Vij's office in St. Louis & left a voice mail for his nurse. She called me back within 10 minutes & told me to get him to the ER immediately, and that waiting until Thursday was completely unacceptable. This convinced Greg, so I arranged child care for Matthew (because I KNEW the ER wouldn't finish with us before 5, when daycare closed) & we got to the ER at about 1:30.

The triage nurse asked what the problem was. I said, "He has multiple myeloma, he's 130 days post stem cell transplant, he has a history of PCP pneumonia and he's running a fever of 103." So, of course, she wrote down on the paper: "fever." Just like the other 137 other people in the ER who had gotten there before us.

Luckily, a friend of ours is the education coordinator RN on the oncology floor, so we called her & she came down to the ER to peel us off the ceiling and reassure us. (Thanks Deb!) They took his temp and a chest X-ray, all of which took about 5 hours. (I really think I could've done it quicker--but what do I know?) and the ER doc couldn't figure out why we came in through the ER. We explained the local doc thought this could wait 48 hours, but his transplant doc said to get in right away. The ER doc said the X-ray showed pheumonia. We figured this was no surprise, as he was presenting the same way he had in 2003. So, they decide to admit him. We finally got to a room about 7:30 that night. The Brincks had Matthew & took him to swimming & Mickey D's, so he was happy. (Thanks Per & Vicki!). Eric took him after that & got him to bed.

Wednesday was a rough day for Greg. He was running high fevers & had terrible chills all day. As we all know, there's no rest in a hospital, as they were hanging antibiotics all day, drawing blood, poking & prodding. He's in an isolation room, so at least its private. But, they said that while it is pheumonia, its not PCP pheumonia (90% of people with PCP don't survive), & he appeared to be responding to the antibiotics, so if he could remain fever free for 24 hours, he could go home. They assured me this would not be a repeat of 2003, with a month in ICU & a close relationship with a ventilator.

I called any family & friends whe hadn't notified on Tuesday. When I called George Connor, he told me he didn't want me to call him anymore, as I never have good news! However, he and Mary brought me chili, hot cornbread & brownies still warm from the oven on Wednesday night. Some people will do anything for warm brownies!

Anyway, (this post is getting LOOOOOONG), he felt much better Thursday. Hardly any fever (just a little in the evening) better color and energy & he even ate something that day (but I didn't bring him any of the brownies--I'm kind of a b!tch that way). So, I had visions of bringing him home today. Not to be, however. (Either they like him, or he has VERY good insurance!)

Late yesteray afternoon, they brought in Dr. Sistrunk (I didn't make that name up), who specializes in infectious diseases. He asked at 34,297 questions, all of which Greg answered negative. He was stumped. He did say that, after 48 hours, someone figured it might be a good idea to have a radiologist look at the X-ray, and he/she said that its NOT pneumonia (or "ramonia" as Matthew says). So, for 48 hours they were treating him for something he doesn't have. Sistrunk says he might have a bone marrow infection, or something else. He says in passing we might have to go to St. Louis. I immediately start to breathe out of a paper bag & ask when this decision might be made. He says in the morning (Friday).

Greg & I dismiss what he says, & continue to fantisize about bringing him home, because Greg is feeling better all the time. This morning, Dr. Raju comes in & says she's got a call in to St. Louis, but hasn't heard back, & its likely we'll have to go. She just can't decide if Greg should go by regular ambulance or air. Time to peel Greg off the ceiling again! I'm not there, as I can't get the hospital before 8:15 or so, 'cause I have to take Matthew to school. Greg does manage to convince her that I can drive him to Barnes.

Anyway, all this time, no one is telling us why. All we know is Greg's fevers are better, he feels better, and they still want to send us to St. Louis. FINALLY, we find out that its because his blood counts have continued to drop since they admitted him (why would we need this information? We're only the patient). They've given him a total of 4 units of blood and a unit of platelets (this is a LOT), and his reds, whites & platelets continue to drop. (Transfusions are supposed to last 120 days). So, now we're a little concerned. Why no one could tell us this earlier is a mystery. However, I've decided that its not time to panic, that they'll tell me when it is, and that I really don't have the time or energy to panic right now anyway.

Anyway, to try to wrap this up, (for anyone who's still reading) I spent 5 hours today packing, getting the bills paid, getting the house in order & arranging child care because we were led to believe we were going to St. Louis by about 4 p.m. today. Its now 10:30 p.m., no one has told us a thing, I'm at home, Matthew and Eric are at the Altoonians (having a great time, I might add!), and we know less than we knew this morning. Apparently, Dr. Vij has to give his go ahead for us to go, then they have to have a bed. We assume Vij wants him, but we don't even know that for sure. The car is packed & ready to go, but I figured I might as well come home & sleep in my bed one more night & shower in my shower one more morning before its back to urban camping in the hospital.

There's tons more I could write, but I'm sleepy & I'm sure you are now, too (if you're even still reading). I'll update again tomorrow if I can (I can't seem to log into the WiFi at St. John's). Hopefully, I'll know more, but then again, the way things are going, all of this will probably change by then.

Thanks for listening. Thanks too, to Anna & Daniel for taking care of Matthew Tuesday afternoon, Per & Vicki, Tom & Julie, Kris & Jim, Skibby, Deb, Debbie, Judy, Sadie & Tom, everyone at my office (especially David for taking over my trial at a moment's notice) and everyone else for your love, prayers & support. A huge thanks, as always, to Eric. I know I say it every time, but we really couldn't be getting through all of this without you.

Love,
Greg & Ann