Setback

Greg is back in the hospital, in ICU. I couldn't get ahold of him all day Monday. I got concerned and finally talked the staff at Hope Lodge into unlocking his room to check on him. He was unresponsive so they called the EMTs. They took him to Barnes Emergency and I jumped in the car & got here about 12:30 a.m Tuesday. He was very disoriented and confused. His blood sugar was 20 (100+ is normal). We spent the night in the ER and yesterday morning, he was placed in ICU. Long story short, they think the blood sugar thing was a symptom, not a cause. They're treating him for infection, and he has fluid on the lungs, which they're treating as pneumonia. But, this morning's theory is congestive heart failure as he still has way too much fluid on board. This weekend he could barely get his shoes on. The confusion is getting better, and he's much improved this morning. They're going to do an echocardiogram, and a spinal MRI. Someone from radiology read the CT scan they did yesterday, saw his C1-3 vertebrae, and freaked. They've put him in a cervical collar again. I can't get any answers on that. My theory is that they're seeing the scar tissue from 5 years ago, when his spine had all those tumors. But, they're keeping the collar on now as a precaution. I can't tell you how thrilled he is about that. I'm being rather pushy for someone to tell me that he really needs it. But, nothing so far. They may take it off after the MRI. He's really uncomfortable.





He also has very low platelets (what else is new?) and a terrible skin rash that looks like burns, mostly on his legs, but also on his lower back & a few other places. Also a little GI bleeding. My theory is that all of this, coupled with the pulmonary issues, adds up to Graft-Versus-Host disease. However, no one from oncology has been here yet to see him. Plus, I get the impression that GVHD is diagnosed only after they rule everything else out.





They boys are camping out at home, with Eric taking care of Matthew unless he's at work or school. Then Matthew goes to day care or the Wherely's. This was Eric's idea. He's a great big brother. I just hope it doesn't overwhelm him. Last night they had a pajama party in our room. I guess that means the bed is full of popcorn again.

Speaking of popcorn, I have to wear the HazMat suit all the time I'm in the room (ICU rules). (I'm going to relate this to popcorn -- just bear with me). The gown and gloves are really hot -- especially when I'm trying to sleep. Its also really hard to type with the gloves on. But, I have found one advantage -- cheese popcorn. I had it for dinner last night. When you're done, you just change gloves -- no orange fingers. So I got that going for me.

I'm definitely urban camping now. Hope Lodge made me check Greg out yesterday. Technically, family isn't supposed to stay in ICU, but the nurses took pity on me since I'm homeless. I have my very own recliner, which was really hard to get. I actually managed a few hours of sleep last night, after only about 20 minutes the night before. I'm going to try to find a place to shower at some point -- I think I have to go to the ransplant unit. Hope Lodge says he can come back, but he must have someone with him 24/7 when he does. I guess I'll just sell the boys for medical experiments and quit my job. Does the hospital sell lottery tickets? Actually, we have a few ideas, but its hard to make any plans right now. I have a feeling he's going to be here a while.

I'll post again, after they change their minds about everything they've told me so far. That usually happens around shift change (7 a.m. & p.m.). Until then, huge thanks to everyone for all the prayers, good wishes, mojo, karma, support and help. You're all keeping me just this side of a nervous breakdown. I can't tell you how much I appreciate that.

Love,

Ann & Greg



P.S. I forgot to mention how horribly rude the ER phone staff was to me on Monday night during my drive up here. Wouldn't give me ANY information, practically called me a liar when I said I was Greg's wife, hung up on me once, kept putting me on hold when I was in the middle of a sentence and not coming back the other times, and flat out refused to take any medical history from me. Super ugly and rude. "HIPPA regulations!" I didn't know HIPPA says you have to be a bitch. I'm going to see about how I lodge a complaint. Maybe Greg will get to rename this hospital yet!