Saturday, November 12, 2005

"Miserable" day, Weekend visiting, Rosebud Parade

Denise felt like she was having a miserable day today. On the heels of yesterday, that's the way it would seem. Yesterday she had about four hours of therapy. Today she only had about an hour & a half, but we were expecting to have four to six hours, just based on the trend since she arrived. Apparently weekends are much lighter. Even though the patient to nurse ratio is 5 to 1, there were so many people coming to work with Denise yesterday that if she needed something, someone could take care of it. Because there were so few therapy sessions today, there were fewer people around and it took much longer for someone to get to her, so she felt helpless & frustrated. One of her college buddies that has a disability came to visit yesterday and today. Denise wasn't particularly "encouragable" today, but she did feel better to talk with someone that really has an idea of what she's going through.

Weekend Visits:
One productinve thing that came out of today was that we know what to expect on weekends now. Since there will apparently be very little therapy on weekends, visitors are welcome during the hospital's visiting hours (I believe 10am-8pm). There's free parking on Saturdays & Sundays in the La Vina lot from Pasadena Ave (the closest lot to Denise's room).

We went to participate in the Pasadena Rosebud Parade this morning with the kids. They decked their wagons out with real and paper flowers & flags. Jacob was pulling his flowers off almost as fast as we could put them on. It's the first time we ever did it, and it was tons of fun. Denise's parents, my dad, and one of Denise's college buddies enjoyed the morning with us. The kids even got a picture with the Rose Queen and the court that will be in the Rose Parade in a few more weeks.

I have a page magnifier for Denise! Thanks for the tips on where to find them. Hopefully it'll do the trick for her.


Blogger Navelgazing Midwife said...

I'm not even sure where to begin. Will I help you feel hopeful? Or angry. I pray for hopeful.

I also have Disseminated Coccidiomycosis (DC) and have since the fires here in San Diego since October 2003. Blessedly, my hospitalization was much shorter (unfortunately, I happened to be in Orlando, Florida on vacation at the time and the ID docs had very little practical experience with DC - I was a teaching tool!), but I have had the full range of -azoles, now living on 800 mg fluconazole (Diflucan) every day. I have no hair, ulcers in every mucous membrane, ulcers on my scalp, take copious amounts of Immodium AD each day to keep diarrhea at bay, am more exhausted than any words can describe, so take Provigil to only take 2 naps a day instead of living in the bed.

I suffered with cocci meningitis, every 6 weeks - lasting at least 2 weeks, usually longer, for over a year until it was suggested (by another cocci survivor, btw) I ask for acyclovir - and voila! I have not had any meningitis in 11 months now.

I've had blood clots with a DVT (last December) and the titer two weeks before the DVT was zero - a miracle! Once I started the Coumadin, the titers zoomed up again, 8 times above where they should have been. (Still far lower than many folks, I know that.)

Last week, my visit with the ID was fantastic. My titers again are zero. I cannot believe how wonderful that is. The ID doc said I will just have to live with the fevers, night sweats, supreme exhaustion, and on the flu for the rest of my life, but I am alive and I can do it.

I am alive. I can do it.

As a midwife, my clients, my own children, my partner of 20 years, and my writing are what keep me alive. Disney helps, too. *laugh*

Please, please, please... email me anytime. I am more than glad to share my hope and hear your pain. There are no words to describe my sadness at your wife's illness and your family's difficulties. I live in San Diego and am up in Anaheim often enough and could certainly wander over to Pasadena if you are every interested in an in-person visitor.

Because I never know when I will no longer be able to be a working midwife, I am in school working towards a Master's in Psychology (so I can help women with birth trauma). I hate having to think negatively like that, but I also need to prepare for "in case of." My children and partner have been through so, so much. I can't imagine your struggles.

God bless you and know I will add your blog to mine and share your prayer lists with those who are in my life.

Thank you for writing. Thank you so much.

November 13, 2005 8:14 PM  

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