3/4/09 - Up and About

We've had several busy days in a row, so I apologize for not updating sooner. We keep hoping that a light day will pop up her schedule, but it's just not meant to be!

Alyssa ventured out into the real world on Sunday, going to the ESL Sports Centre to see Athena play Fairport in the Section V Hockey final. Athena won (sorry Heidi) so a good time was had by all the Deff's. Several of the players are good friends with Ryan and Kyle. Alyssa enjoyed her first outing, although she slept for hours upon returning home.

Monday saw a return to plasmapheresis at RGH. Her HCT level had dropped to 22, which will mean that she will need another blood transfusion. Alyssa is begun receiving the drug, Aranesp, which should help to build up her HCT count, and eventually eliminate the need for blood transfusions. Relative to plasmapheresis, the plan is to try two treatments this week - Monday and Friday, then possibly one treatment next week.

Following her plasmapheresis treatment, we drove over to the dialysis treatment center to be briefed on the peritoneal form of dialysis. Alyssa has decided that she wants to switch to this format as it will give her move flexibility. I will use the next update to explain this process and it's impact on Alyssa.

We finally got home around 5:00PM, so it was a really long day for Alyssa.

Tuesday wasn't going to be any easier. Dialysis was moved up to 9:00AM so that Alyssa could meet with the peritoneal surgeon in the afternoon. During dialysis, Alyssa had the opportunity to meet 1/1 with a 38 year old woman who is currently using peritoneal dialysis. She was very helpful in helping to eliminate some of Alyssa's concerns.

Following dialysis, we went over to see Dr Kurchin to discuss the surgical process of implanting the catheter into Alyssa's peritoneal cavity. It is a relatively basic surgery that will be performed on an outpatient basis. She should be in and out within three hours. Continuing with her string of great doctors, Dr Kurchin made a big hit with Alyssa. He is very engaging and informative. He's also French with an accent that makes him sound exactly like Lumierre from Beauty and the Beast. He is the only surgeon in this area that performs this procedure with a scope, which makes it a less invasive procedure. She is scheduled for the surgery on March 18th.

It's now Wednesday morning and we have already had blood drawn and met with her hematologist, Dr Kouides at RGH. We still haven't anything from the University of Iowa relative to her genetic testing. Dr K has put together treatment plans that address three potential results that could come from the testing. I'll share those on a "slow news day."

Shuffling down the hallway of RGH, we are now in the Neurology area where Alyssa is presently undergoing a MRI brain scan. This is a follow-up procedure to ensure that the fluid which caused her seizures is no longer on her brain. It's a painless procedure, but you are in a very small chamber that sounds like the inside of a washing machine. ADD and claustrophobics should avoid if possible!

We're finishing off today with the three of us going to Tapas 177 for dinner and then to Jersey Boys with a group of friends. Alyssa has always been a big fan of Broadway musicals. It will a full day, but one she says she up for.
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