Friday, February 08, 2008

Notes but no more clues....

Hi there: It is Friday morning and I am sitting in a large atrium called "The Park" below John's new room on G11, the bone marrow transplant floor. I am drinking coffee and deciding that I should update you guys on what is and isn't happening. I can summarize by saying that we still don't know very much about what is causing John's walking and talking problems, but there are many doctors trying to figure it out.

Last night we moved from P(Purple)602 to G (Green)1160 near the F elevator. This room is next door to the room we were in about a month ago. Patient Transportation brought John into the new room in a large cart that is meant for carrying a patient plus their belongings. It looks like a big sleigh. John was smiling and looked a little Christmasy in the front of the sleigh in his red knit shirt and red plaid dance pants. Mason and I came behind with multiple computers and other bags. This room is bigger and nicer (more room for 3 computers, 3 phones, speakers, sound systems, etc.:) and it has a Murphy bed that we keep folded down as a sofa. It felt familiar to come back to the floor where we know so many of the staff.

We saw doctors yesterday. Dr. Forman and several students and ''fellows" stopped by early to say that the new MRI looks similar to the last one about 10 days ago, not better and not worse, and therefore inconclusive. Dr. Forman was very apologetic about not seeing us the day before, and I learned that he had actually come by--right after he had told the nurse he couldn't come and ten minutes after Mason and I had gone to dinner:) Neither John nor the nurse had remembered to mention it to us, as the doctor had immediately left after saying hi to John and seeing that I wasn't there. Anyway, they want to see the pneumonia resolved and are consulting again with Dr. Prabhu, the surgeon who left for Dubai. He did admit that the other neurosurgeons do not wish to do the diagnostic surgery.

Dr. Hosing and the bone marrow team who are on for this 2 week period (Dr. Andersson is not on this week--They all rotate for 2 week stints) called for Infectious Diseases people to come in re: ambisome treatment length and other matters. Also John's heart rate is a bit elevated and they are watching that. They are ordering a follow up chest x-ray for today or tomorrow.

Two doctors from Infectious Diseases (read Infections--a big component of this place which is full of immune compromised peope) examined John at different times and each asked a million questions--whether John had been exposed to TB, where he had traveled, and a lot about the timing of various drug regimens John had been on and various symptoms and problems we had seen. These interviews were interesting, stimulating in our minds many hypotheses, but again frustrating because there have been so many events that it seems impossible to speculate about what might have cause what and when. At least from Mason's and my perspectives. These docs do seem very interested in looking for solutions for the brain problem, as well as checking out the pneumonia further by ordering a CT scan of the chest for today.

I am about to go up and see doctors again. John and Mason were sleeping when I brought breakfast to them. I got a great night's sleep in the hotel and am super grateful to Mason for being here with me. More today, I promise, no matter what I still don't know....Love, Anna


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