A Letter from Patti

Okay, there has been much thought put into this and believe me, I have cried enough in the past couple of days so please respect my decisions. My head tells me to stay in Cleveland but my heart tells me to go back to the comfort of my own home. The pros and cons have been weighed and my heart wins. I am not thinking about the money part of it, so don't think that that's the reason I don't want to stay in Cleveland.

I think that this is happening for a reason and maybe the reason is that my heart wanted to be home so bad for the holidays and possibly Brady's first birthday. Maybe my New Year will really be started with my new organs.

The doctors have informed me that at this point, no matter how much they call the OPO (Organ Procurement Organization), I will not get the organs if there are people who are more sick and match the same organs. My scores will pretty much not change either. I guess the only way that my lung score will change (a big jump anyway) is if I'm on a ventilator and we don't want that.

We are also going to rotate (or whatever) antibiotics to try to keep me more healthy. Also, I have talked to Dr. Mehta about if I need to be hospitalized again for a flare up, he said that I can stay at University hospital unless my lungs take a major turn for the worse or I start coughing up blood again, then I have to come back out here.

My mom will be putting her stuff in storage and coming to stay with us to help with Brady and things around that house. So, this is how it is for now.

If we get the trasnplants before the holidays, that's fine with me too but at least I can be home for a little while. I still have my worries about the snow and possibly not being able to fly, but that's the chance that we would take if I never came out here to begin with. Anyhow, plans are for me to be out of here Friday (December 1, 2006) morning and on my way home. Please pass this on to others that are on your lists so they know not to send me mail out here anymore.

Thank you and love you all!
Patti

After Thanksgiving

Nathanial and Brady went to see Patti for Thanksgiving. They actually got to leave the hospital for a little while and went out to dinner. Brady Michael slept through dinner, but he was happy to be with his mommy and she was happy to be with him.

Unfortunately on Saturday Nathanial and Brady needed to come back to New York (home). This left Patti alone out there in Cleveland. After sending out a request for visitors who live in or near Cleveland, an email was received that there is a family (and maybe a church) just south of Cleveland that would like to "make Patti their girl" to visit her and help to keep her and her family company while in Cleveland. I would like to extend my thanks to Christian and Emily Costa and their 4 girls for caring enough to want to visit Patti.

If nothing else, the email request I sent out has extended prayers for Patti greatly! As most of you know I included this web site in the email (as most of you got that email too).

Now here is the "latest" news from Aunt Sally....

Dr. Mehta told Patti today that if releasing her from the hospital does not lower her score on the national list, she will be released. This has Patti very upset. The car ride home (to New York) is too much for her and she does not have a place to stay in Cleveland. Any suggestions?

Here is what would be optimal...
1. To get Patti's mom, who is having some great financial difficulties, "moved" to Cleveland from New York. (I'm working on getting information from Joan -- Patti's mom -- on what exactly she needs to complete here to get her moved there.)

2. To get Brady out to Cleveland to be with his mommy for as long as possible while she has to be in Cleveland. (This would mean someone needs to be there to take care of Brady, and Patti a little bit.)

3. Housing... We need housing near the Cleveland Clinic.

I'm open to any and all suggestions. Please, please send me yours.

Thanks,
Aunt Katy (princepack@frontiernet.net)

Or just post a comment and I'll get it and share it with everyone.

The Waiting is the Hardest Part 11/12/06

Here is Patti and her little man, Brady.

He loves his mommy, can't you tell?

***********************************************

In the email that I got from Patti tonight with the above picture, Patti explained to me that the waiting is the hardest part. Sometimes she feels like this is never going to happen. All she wants is for it to be done and she gets well enough to go back home with her husband and baby (who doesn't seem much like a baby anymore). She enjoys her moments with him so much and can't wait for it to be all the time!

We are still looking for "stand-by" people who are willing to go out for a week at a time (or even a few days) up until Patti has the surgery. This week, Patti's high school French teacher is giong to go stay with her. The only expenses anyone would have to be there with her is your own food and drink. The room that you would be staying in is being paid for by Patti's mother and father-in-law (Dale and Gina). That is their contribution to the benefit fund, in addition to helping to handle the money and making sure the bills that need to be paid out of it are paid. Thank you, Dale and Gina. What a great help!

After Patti get's her transplants (soon, God. Please, God let it be soon), the room will be used by Dale and Gina so that they can be there with Patti too.

What do we need now? Well, what does Patti need now?

1. More prayers!

2. Companions. She is so afraid of being caught out there alone when the call comes in that says they have organs for her. If there isn't anyone right there with her, she will end up going into surgery alone. If there is anyone out there that would like to go stay with Patti (even if you don't know her well, but you are just willing to sit with her for a little while every day and be there for her), please email me princepack@frontiernet.net or Patti's aunt Sally sai3@cornell.edu

3. More prayers! Look at that picture at the top of this web page! Even in the state that she is in, she finds the will in her heart to be happy with her Brady. Keep praying.

Pictures from the week of Nov. 6 - 10, 2006

Patti and two of her doctors in Cleveland.

Patti and Rosemary her social worker.

Patti, wearing the robe that Aunt Sally sent to her, and her Grandma Croop.

Double Prayers Tonight - Nov. 8, 2006

Patti had a better day today, the antibotics kicked in and she had a pretty good day.

Thank you, "prayer partners" and THE Man upstairs! She is back eating and is tired from the last few days so she is going to try to get some much needed sleep.

Double prayers tonight for a donor soon.

Pray harder -- November 7, 2006

"Patti's fever was worse today, light headed, twiching eyes. A Cat-skan was ordered to decifer what the hell was going on. They honestly thought there may be a blood clot in the lungs.
When they were ready to do the Cat-Scan with the dye it would not go through the port, it was clogged and they had to change it. They did the table dye through the vein and the vein blew. Called the nurse to run the vein so they could accomplish the Cat-Scan.

She still had nausia, headache, and she was scared with her CO2 level so high.

I believe that I have been doing secondary praying for a child I love to life. Hear my prayers, I am here (Mom thinks I have a calling, I think I have too much of a hellion in me to even be considered) what ever you want from me just call, I'll be there. Love, Aunt Sally"

News from November 7, 2006

News from Sally:

November 6, 2006 started out OK, but ended up not a good day. Patti's fever is back. They put her back on antibiotics. She was lightheaded, with a bad headache. She did keep breakfast down, but not all of lunch. She didn't want dinner either, but said she was going to try to sleep and maybe when the night snack came she could keep it down.

They took more blood (which seems to be flowing more) Xrays of her lungs and put her on Colispen which is stronger than the Toby.

The doctor also told Patti the other person on the list had her transplants this weekend and she was surprised Patti did not get hers first.

Soon, please GOD! Patti's Grandma Croop (who is spending this week with Patti) left for the evening, as Patti wanted to sleep.

Dear God,
We know that you know the time and the place and the situation for everything. We become scared because we do NOT know the time. The unknown frightens us, makes us irritable, uncomfortable, and sad. Please God, let the time to heal for Patti be now. We don't want to be scared any more. We don't want Patti to be scared any more. We know that you know, but we don't know the time. Please God, give Patti the strength to hold on until Your time to heal so that she may again have her time to laugh with friends and family, embrace Muff and Brady, love life by counting the moments that take her breath away instead of having to focus on the strength to take a breath, and a time to dance. O God, please heal our beautiful Patti so she may dance through life with her Muff and Brady.
Amen

News for November 2, 2006

Patti had a good day on November 1, 2006. They will start her on physical therapy November 2, 2006 to keep her upper strength up, she is walking some and keeping the lower body strength up.

We need someone to go stay with her next week (November 6 - 12, 2006), her anxiety of being alone when they have a donation is unthinkable. The out of pocket costs for you to go sit with her right now are gas to get there and your food, Gina and Dale are paying for the room at $50.00 a night instead of making a donation to the benefit fund. The one stipulation here is if a donor is offered the room is immediately vacated for the paying people, which is only logical. If you decide to stay through the transplants you pay for your own accomadations.

We need someone to go stay with her as Harlan is leaving to come home on Sunday. I am not sure if Muff and Brady are making the trip down this weekend or how Harlan is getting home. I will do some research and get back to you. If you can go down for even a couple or 3 days let me (Sally at sai3@cornell.edu) know. As always I thank you for your love and prayers.

In the words of Brooks and Dunn:

"I raise my hands, bow my head

I'm finding more and more truth in the words written in red

They tell me that there's more to life than just what i can see

Oh I believe"