OK people I'm going to get a little into Patti's current health, which we haven't done thus far, but prayers need to continue and gain in severity! I don't want to scare anyone too much, but here is the gist of things as I see them.
A lot of people got an email from Patti's sister Barb about Patti's appointment with Dr. Sexton. Here is more:
- Patti had a doctor's appointment on Monday, July 10, 2006 with Dr. Sexton (her cystic fibrosis doctor in Syracuse).
- Her lungs are still functioning at 17%.
** Here is an exercise so you can get an idea of what this means. Take a breath in for the count to ten then let it out. Do that 3 or 4 times. Now take the breath, but only for the count of 2 and let it out. Do that again 3 or 4 times. I (Aunt Katy) imagine that to be how Patti has to breathe all of the time. After 3 times of the count to 2 I got light headed. ** - She has lost another 6 pounds.
- Doctor Sexton would like to insert a feeding tube for her to use only at night and she needs to eat well during the day to try to regain some weight.
- Doctor Sexton would like Patti to fill out her DNR because if Patti has to go on a respirator (life support to make her breathe) she will NOT get the transplants even if she is already on the list.
Here is the information from "Aunt Sally" about what is happening in Cleveland:
"I spoke with the Social Worker, Rosemary Lann this afternoon. This transplant is not a by the book process because of the severity of being double lung and liver. The doctors have not committed to it yet. I told her we have our 6 week Care Partner Joan, and an additional partner signed up for the 6 weeks. The Esiason Foundation has said they will fund the housing once she has been added to the list. She was impresses by our hard work!"
"Alan Stewart is the Transplant Coordinator at Cleveland Clinic and Rosemary said to call him. I called and left a message for them to call me back so I can ask him the following:
- Are all of the test results back?
- Has the appointment with the surgeon, David Mason been waived for Patti or is there another surgeon she has to see or talk to from Dr. Sexton's office?
- Does she still have to make an appearance before they will have their "pow-wow?"
- I, Aunt Sally, think we should move her down there, Rosemary says not to do this until we have a commitment from the doctors that they will do the surgery. I, Aunt Katy agree that we should move Patti to Cleveland as soon as she is put on the transplant list.
So immediately, the following demand our undivided attention:
- Who is doing the cleaning of the basement? When?
- Who is laying the new floor? When?
- Sally will call Dr. Sexton and find out when he is planning to insert the feeding tube to help her gain some weight back.
- Who can relieve Sarah through out this summer? -- Katy is in charge of this. Any volunteers to take weekends when Sarah wants to come home would be appreciated.
- Each of us needs to come at least once even one night for one hour and help in what ever way we can -- bring diapers, formula, groceries, etc.
- Who can make some dinners for freezing? (Sally will be bringing some up this weekend) It would be appreciated if others would do this also.
Please post comments to this blog here so that everyone can see what everyone else is going to do and the "list" can be compiled, evaluated, and tracked.
