Friday, October 27, 2006

Update from Sally 10/27/06, 10:30 am

I (Sally) just talked to her (10/27/06, 10:30 am); they may release her for a couple hours so she could go out to dinner. The doctors thought about releasing her for a few days and readmitting her, she is not in favor of this, what a hassle. She had a rough night without much sleep and is very tired.

Joan did find a California Pizza yesterday and made Patti's belly happy!

When I talked to Joan she said she is headed back today around 5:00. No luck with the house hunting, although Rosemary said she has some contacts that are about 20 to 30 minutes away from the hospital with housing for about $520.00 a month. However she has not brought them to Joan, I gave Joan her direct number to contact Rosemary.

I also broached the subject that this is just insane how long it is taking to receive a donor. The doctors feel the same way; they just cannot believe this has not happened yet! Thank God she is strong willed I am taking credit for that she gets that from me! Yea right!

Muff and Brady are headed down today after work, and Patti is very happy about seeing her men! Harlan is going with them to stay next week with Patti.

Tuesday, October 24, 2006

PUSH 4 Patti Card Drive!

OK. I am hearing that people don't know what to send to Patti. Let's have a Card Drive! Everyone send her a thinking of you card, or a funny card, or a prayer card, a puzzle card (she loves word searches), or a get well card, OK? Get your church groups involved, or your co-workers who you have talked to about this situation. EVERYONE!

The address is:

The Cleveland Clinic Foundation
9500 Euclid Ave.
Room G8127, Patient: Patti Prince
Cleveland, OH 44195

Also found at the top of this blog all the time, so come back any time to get the address again for the next card.

Here is the latest news: After running a fever over the weekend and more testing, the doctors have no idea why she had the fever. They did put her on antibiotics and the fever came down. They took her off the antibiotics and the doctors assume the fever will return. They are taking her off the antibiotics to give her body a break and not get too dependant on the meds.

She is still number 1 on the Cleveland list, and still number 49 on the national list.

Most importantly, she knows we are all praying for her and she appreciates it. Now...

CHARGE with the CARDS!

Thursday, October 19, 2006

Passing time -- Still waiting for transplants

I spoke with Patti on the phone last night and she sounded in pretty good spirits. She said she enjoys getting the mail that people are sending her and she can sometimes get on her own email, but not often.

I'm looking into the settings that would have to be on a laptop if she could get connected to a network outlet in her room and have internet access... OR, if she would have to use a dial-up.

She has a DVD player with her, so if anyone has a movie they would like to send to her, she can watch it.

"Aunt" Jan is out in Cleveland with her this week and as far as I know, Patti's mom, Joan and her boyfriend, Barry are going to go out next week. And I believe Dale, Gina, Mary, and Brady (maybe Muff too) are going out this weekend.

Remember, no fresh flowers and she still loves to eat, so desserts are good.

She has been watching TV, doing word puzzles and such and just talking with whoever is there. She likes phone calls too, but sometimes can't talk much.

I guess that is about all for now. I'll have results from the Music Gala after Sunday 10/22/06.

Friday, October 13, 2006

Truly Number 1

Patti is truly Number 1 on the list in Cleveland for the transplants. There have already been "offers" so-to-speak, but they haven't been just right for Patti (one donor had organs that were too small, the others didn't have all three -- both lungs and liver -- organs available), so time is getting VERY close. Keep praying.....


On October 12, 2006, she was checked for Diabetes and her oxygen was moved up to 6 liters, which pushes her up on the national list. She is still 1st on the Cleveland Clinic List, but her rating on the National list is now 49! Also, her roommate died on the night of October 11 (morning of October 12) and she was in the hall in a wheelchair from 4am until 11 so she has had some tired times, but feeling pretty good!

Here is the family portrait that was taken on September 19, 2006. The day after Brady got his prosthetic eye. :-)




Also, here is a "copy" of the article that was in the Ithaca Journal on October 11:


Article published Oct 11, 2006, The Ithaca Journal
Organist puts on musical fundraiser

When Jen Gage Sage, Dryden United Methodist Church organist, heard Katy Prince share the story of her niece, Patti, she responded with history and heart. Gage Sage said, "You can't hear a story like Patti's and not want to do something about it."

Patti Prince is a Utica area native. This 25-year-old mother to 9-month-old Brady has suffered from cystic fibrosis since birth. This debilitating genetic disease deteriorates the lungs and liver. There is no known cure, although an arsenal of medicines and machines help to add years to a cystic fibrosis patient's life. For Patti, the next step is a double lung and liver transplant, which she awaits while in a Cleveland hospital.

Patti's family has surrounded her with love and support and involved the community in her story with a variety of fundraisers. Katy organized a motorcycle ride in August and a car wash to coincide with an early September chicken barbecue. The funds from these events will go toward the $20,000-$30,000 of out-of-pocket expenses Patti will incur with her treatment.

Here's where the Dryden United Methodist Church comes in. The church has stepped up to the plate to assist in Patti's plight.

Gage Sage knew Patti was a flutist when her lung capacity allowed. For Gage Sage, music is like breathing, and she was touched by this opportunity to help return Patti's breath, both figuratively and literally.

She is associated with many fine musicians from Ithaca College through an interesting venue. Gage Sage enjoys Chinese food and has found a welcoming table at the Hai Hong Restaurant in Collegetown. During her visits there, she has come to know several of the staff, which includes marimba player Yu-Tzu Huang and pianist Billy Chou. Yu-Tzu is a two-time winner of the coveted Ithaca College Concerto competition.

Combining both of these interests, Gage Sage has organized a Magical Evening of Delectable Music and Decadent Desserts, which will showcase both of these musicians and The 1020 Danby Jazz Trio.

Gage Sage said Death by Chocolate, Cream Puffs and German Chocolate Cheesecake will be on the menu.

The event will be at 4 p.m. Sunday, Oct. 15, at the Dryden United Methodist Church. Suggested donations are $20 for adults and $10 for seniors and children. Doors will open at 3:30 p.m. Contact her at 347-6888 for more information.

Monday, October 09, 2006

Update and Reminder

This week's update is this:

Patti is still in Cleveland, the doctors will not release her until the blood is gone and her coughing up is a lot less than what it is now.

Brady is lying on her bed with her right now (Monday, 10/9/06, morning) and tooth number 2 poked through this weekend while he was there with her!

Muff and Dale and Brady are coming back today around 1:00pm, Gina is going to stay with Patti this week. Next week is covered by Muff’s aunt. After that we may need to have someone else volunteer to go out during the week to stay. Dale or Muff are going to alternate weekends driving out so if you can go and stay and need a ride the pick up place or meeting place will be Syracuse. Let me know if you can help out with this.

Mary is still going to take care of Brady during the week.

This weekend is the Music Gala and Dessert Night at the Dryden United Methodist Church. Music starts at 4:00 pm and everyone is welcome. A donation at the door is encouraged and greatly appreciated but no one will be turned away from the event for inability to donate. Please come and enjoy the music and desserts.

Tuesday, October 03, 2006

Patti will probably stay in Cleveland

Here is the latest:

The doctors met yesterday after putting Patti on vipac breathing machine that forces oxygen into her system. The CO2 levels are still not right, but they are not too concerned about it because her body is compensating for it. They also said they are 90% sure they are going to keep her until the transplant, and that they want the transplant to happen now. Also, because of this machine it moves her up on the list again.

Please do not try to call the clinic. If you have any questions, email princepack@frontiernet.net and we will try to get answers for you.