Saturday, September 09, 2006

Release day?

Hi everyone:

Patty had a minor upset this morning when nurses told her she wouldn't be starting her second round of IVIG until six o'clock this evening. She called the transplant coordinator, who called the cardiologist, who then came to tell Patty she would start her infusion at 11am. Barring any unforeseen events, we should be leaving the hospital by early evening.

Yesterday, Connor punctured his foot on a piece of metal in our backyard. Our neighbor Denise once again proved how much of a great friend she is -- she handled all aspects of getting him checked out at the doctor, on a day that was already pretty rough for her. Denise also made a beautiful stained glass window for the fundraiser, and has consistently been there to help. What is truly amazing is that she's such a great person, and yet she's a Cubs fan. Some of life's mysteries will never be solved, I guess.

Fortunately, Connor did not need stitches, and should be just fine. Of course, the whole experience brought out the maternal side of Patty, who was a wreck because she couldn't be there to comfort Connor. We're pretty proud of PJ, who really stepped up in a big brother role.

On Thursday night, Cindy stayed overnight with the kids, and Neil is spending the day with them today. We're very fortunate to have so many wonderful friends and family members.

One of the transplant team members shared with Patty that she's a bit worried about the whole lupus issue. Although all of the recent tests came back negative for systemic lupus, there's a very real chance it would be masked because of the cytoxan Patty takes. Rheumatologists want to test Patty without cytoxan to confirm a diagnosis, but the cardiologists feel strongly that Patty should stay on the drug because of its antibody-fighting qualities. So, for now, we know that Patty has some form of topical lupus, but we may be waiting for some time before we get a clear picture of whether she has a systemic variant of the disease.

Patty's white cell count is low right now, which doctors attribute to the plasmapheresis of the past few days. She'll need to go to Edward to have it checked sometime next week.

I have some work I need to get out the door in an hour or so, so I will sign off for now. If there's more to report later, I'll get back with you.


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