Surgery Date Confirmed

Surgery is now scheduled for 12:30 PM Monday, December 3, 2007.

Hopefully, the 4-5 hour surgery can be done with several laproscopic incisions, then begin her recovery with light liquids and pureed food prior to being discharged in a few days. The feeding tube will remain until we return in January or February.

No more nightly tube feeding? Significant reduction in insulin injections? No more acid reflux?

Joy has a bronchoscopy schedule for December 11 th and pulmonary clinic on December 12 th. Will she get a release then? A lot of bridges yet to cross. One of our new friends was packed and planned on returning home after her clinic visit yesterday but bronch results indicated problems and she was re-admitted. Her daughter seemed a "little down". Ya think?

Joy will really need our prayers for this one!

Still No Surgery Date )*&^%$#@(

We have not updated this site lately since nothing was proceeding according to our plan. However Joy continues to gain strength, shows improvement and feels the best post surgery.

Clinic went well today and her labs, x-rays and manometry test were satisfactory and all of Joy's doctors are convinced 100% that this surgery is necessary and the outcome should provide protection to the new lungs from reflux aspiration and therefore increasing her lifespan.

So you ask, "what is the delay?" Depends upon the &%$#(@$ surgeon's schedule and thus far we have not been successful in getting a date that sticks. Maybe next week? The following week? And, Joy is getting very, very, very hungry. Almost 5 months and no food and limited water.

Cathy and Kayce have been invited to one of our friends house for Thanksgiving dinner. Kevin is going out of town on a hunting trip. Caroline and Crystal along with niece Lora and her friend Erica will join Joy and me for Thanksgiving dinner at a local restaurant. Joy will sip water on ice while we indulge. She might nibble a little but don't tell anyone!

So, we enjoy the beautiful weather and fantastic fall foliage and pray for rain to help towards the 60 day remaining water supply for the area.

Happy Thanksgiving

Surgery Date Unknown

The surgeon called this morning to advise that after studying some of her recent test results, he wants to confer with endoskopy doctors to resolve any concerns. The concern is and actually has been previously, that muscles in her esophagus have weakened which may delay food movement (motility) to the stomach. So if he reduced the size of the opening into the stomach to reduce acid reflux, it may also cause motility problems at that juncture and compound her problem. Since these tests were done more than a week ago, we just wonder why this issue was not resolved prior to yesterdays roller coaster ride of emotions.

So, we wait and expect to get an update from the doctor "sometime next week", whatever that means in doctor speak. This will be a 4 1/2 to 5 hour surgery so we want them to get it right!

Joy continues to gain strength, finally getting out and about and still catching up on her sleep. Clinic went well yesterday and PFT numbers were the best post transplant.

SURGERY CANCELLED

Stomach surgery scheduled for tomorrow has been cancelled, apparently over concerns with recent test results. That is all that we know at this time (1:00 PM EST).

Stay tuned......................

Progress

We went shopping on Saturday and Sunday for a couple hours which included a trip to the nail salon and a pharmacy run. Both, pretty good days and she said she feels a little human for a change.

She received a phone call today from the surgeon's office advising that her surgery is scheduled for Friday. Between now and then, we will meet with him in clinic, have a regular clinic visit and a pre-op clinic appointment and another day of rehab. Joy tolerated her first day back to rehab today quite well.

This surgery is not the panacea to end all and is not without risk but, we have to trust the doctors medical advice that it is absolutely critical so, we proceed. The surgeon describes her reflux severe enough to cause lethal incidences and worthy of the risk for increasing her chances of survival.

Discharged

this Against Joy's wishes, she was discharged this afternoon and will return to clinic next Tuesday to meet with the surgeon to discuss a date, hopefully soon. They promise any delay is for medical reasons and not scheduling. The rejection and infection issue has complicated this somewhat but not to the extent that they cannot do the surgery. The doctors are 100% certain that it is medically necessary due in part to Joy having the worst case of acid reflux they have seen. If she did not have the surgery, the reflux would continue to infect and destroy her lungs and drastically impact her survival. Six to nine months of the three antibiotics should control the MAC infection mentioned a couple days ago.

So, the Thanksgiving trip looks doubtful but she is adamant that as Dolly Parton sings, "Trim the tree and wrap the presents, turn the Christmas music on, this Christmas I'll be home with bells on."