I told them so.....

Family and friends,

I'm a lot a bit angry right now, so in order to calm myself down I'm going to talk about positive things first. Yesterday they removed the dialysis tube that was in Bob's neck. Basically the surgeon just yanked it out when Bob wasn't looking. No anesthesia or anything. Bob did really well. Secondly, the physical therapist came in today and got Bob to actually stand up and he's been sitting in a chair in his room for the last 4 hours. Finally, and Bob's most favorite, was that the speech therapist came back today and retested Bob on the swallowing of the green applesauce and water and he did great. No aspiration into the lungs. Tomorrow will be the final test where they do a video swallow exam where they follow the fluids (I guess on a CT or something) to ensure that they are not going into his lungs. Bob is very happy, excited, and optimistic today. Bob is obsessing with food right now, not the bigger picture - that's my obsession.

That being said, here's the part that I'm angry about. I had to stalk the GI doctor this morning. Called his office, called his nurse, called the nurse at the hospital, had him paged overhead etc... because he was supposed to read Bob's video capsule this morning. He FINALLY called me back at 1:30 and said "I've got some bad news, the capsule showed that Bob is still actively bleeding" (which I've been saying for the past 2 weeks!) and that the area that is bleeding is lower than the place where they had previously cut. (Remember how mad I was that they didn't look at the rest of the lower 15 feet of Bob's intestine?) Well, surprise surprise, that's where the bleed is coming from. Now I after I had the doctor admit 2 weeks ago that they didn't look at that part because they were sure that the part they cut out HAD to be the only spot, then they changed their story and said they couldn't go any farther because of risk of perforating the remaining 15 feet. So, if I believe their second story that they couldn't go any farther for risk of perforation, why would we let them try it again? The camera pill showed active bleeding, but couldn't determine if it was from a blood vessel, a tumor, or a ulcer. (I'm hoping ulcer since that's what he's been having). So now we have to make a decision. Do we let the original GI doc and surgeon cut him open again, or do we have him transferred to a hospital that is equipped to do a double balloon endoscopy (which has the ability to see the whole intestine all 30 feet). Now to make things worse, I spoke to Bob's oncologist for a long time today. Although Bob is in remission, the course of chemotherapy for Leukemia is 7 days initially (which he's already had), then 3 days of lesser chemotherapy on the 30th, 60th, 90th, and 120th day to ensure that all the Leukemia cells are killed. Now we've obviously missed the 30th day schedule. But the doctor is concerned that if we don't start the 3 day therapy soon, the leukemia could come back with a vengance and it would be much harder to get rid of the 2nd time around and he'd need to start back at the beginning with the stronger 7 day treatment. So it's imperative that we get the 3 day chemo started soon. No one wants to do the chemo though because he's actively bleeding. So we've got to fix the bleeding ASAP. That's why I'm so frustrated. Lots of big decisions to make and they have to be made quickly so we can get Bob not bleeding so he can start 3 day chemo. I encourage people to put comments below with their opinions.

One step forward, two steps back.

Please keep Bob in your prayers.
Love and thanks,
Michele