September Sunset

Over the course of this last week, Joy has made great improvement in several areas which on the surface seem slight however, they are significant steps in her rehabilitation. For starters, she has not used oxygen for a couple weeks even with exercise. She walked the long halls to the clinics and tests without the aid of a wheelchair. Additionally, she stopped using the rolling walker at rehab, walked a couple days holding hands with a PT and now walking almost a mile on her own.

Her back pain continues to be an obstacle and we should get the results of a recent MRI and CT Scan in clinic this next week. Lab results (blood, O2, vitals, pulmonary tests) remain generally stable but continue to adjust insulin to balance low blood sugar readings. We believe the quantity of meds and more particular Prograf (anti-rejection), is contributing to some personality issues but over time they should be resolved.

Her progress sometimes seems a little slow when compared to a couple of our new friends but we also know of several that have been back in the hospital 3-4 times and still on round the clock IV's at home and still on oxygen and greatly challenged at the rehabilitation center. And, we have learned of others that did not survive, so overall we are fine with being in the middle and continuing to progress. We met a 5 year survivor in clinic this week and although his road to recovery has not been perfect, he is quite happy to have this extra time and appreciates the time with his grand kids and traveling. It is quite alarming that on average, only 20% of the transplant patients are compliant with medicines and clinic follow-up appointments and this was the root cause of 3 out of 4 of the aforementioned deaths.



Surgery is schedule for October 31st but since this would interfere with her plans to go "trick or treating", we plan to ask her doctor to convince the surgeon to schedule it sooner. We know this surgery offers additional challenges so we want to proceed as soon as realistically possible and begin to learn how to eat all over again. An Illinois Thanksgiving?

Update

We have not had any significant developments or changes this past week but we wanted to keep you current.

Joy had her clinic visit Tuesday and everything is progressing. O2 levels are up and lung function has increased slightly. She will be having CT Scans next week of her lungs and back. They are trying to determine the cause of her back pain. A nerve block may be indicated if warranted. She saw the stomach surgeon and we are waiting for a call to schedule a date for the surgery, probably the middle of October. Once she has recovered from that surgery, we should be able to return home. Otherwise she continues to exercise on a daily basis at the Center for Living, receive tube feedings 14 hours per night and has weekly clinic visits and tests.

We will keep you posted if anything new develops. Joy thanks everyone who remembered her birthday. She even received a must unusual gift of a camel (stuffed). She really enjoyed my sketch of a birthday cake but it went up in flames when I lit the candles. What a shame, it looked like it would have been delicious.

Musings

Joy would like for me to share some of her thoughts with you. My daily trip to the mail box usually results in a bounty of get well cards for both Joy and me. After a prolonged illness, greeting cards usually begin to fall off after several weeks however, we have continued to receive numerous cards to add to our several hundred on a daily basis. Now, this is not a solicitation for more cards but a sincere acknowledgement of our appreciation for your extra ordinary concern for both of us. This includes family members, friends, church friends and high school buddies. Joy was especially touched to receive a blog comment from Bob Loghry several days ago. Bob and Joy began kindergarten together and traversed the Montpelier Public School System through the 12 th grade. It was such a thoughtful gesture and to realize how firm old friendships really are.

For, Stephen Bauer, just in case the great "The Ohio State University" wins the battle with your school, can we settle on dinner at Hamilton Lake next summer? This will be conditional upon your mother not eating the seafood platter next year.

People are beginning to inquire about our return to Chicago and the direct answer is that we do not know but, we are "kinda" hoping for the first of November but will disappointed if we are not there by Thanksgiving. Just to many bridges to cross to be more specific.

ER AGAIN !

To use a good southern phrase and we are in the south, "it just ain't fittin' " if we don't visit ER more than once or twice while we are here! After working most of the day yesterday (Thursday) trying to get Joy's feeding tube unclogged, we gave up and received the doctor's permission to use an alternate tube "one time only" to provide some evening nourishment with plans to visit ER by 7 AM today (Friday). The tube actually has a tube within a tube, one to the stomach (G)and the other to the intestines (J) which is the one that we normally use. The advice to arrive that early was perfect! There was no one in the waiting room when we arrived and got back to a room faster than getting to a hotel room. By the time we left almost 8 hours later, the waiting room was packed (easy 150+) and the nurses told me it was an exceptionally busy day with serious and numerous trauma patients. Four Life Flight patients as well.

So, after consulting with team doctors, they decided to perform surgery and remove the old tube and replace it with a new one and so far it is working. I wish I could say I was optimistic, but we will see. Joy tolerated the surgery and is recuperating at home. Due to this side trip, we both missed support group and her rehab today. It is so difficult to sustain any continuity in regards to rehab but hopefully, the tube issue is behind us. I think this may give them thought to accelerate the stomach surgery but, that is no miracle cure either. She will have to learn to eat all over again and for several, this has been difficult.

Unless we have more issues develop, the plan will be to rest up over the weekend and start all over with rehab on M-T-T-F with clinic on Wednesday.

And today, Nifong goes to jail, the lacrosse players file suit against the city of Durham for $30,000,000.00 and the city gets a new DA. Oh yah, Duke football will try to make it 1-21 against Virginia tomorrow. Not!

IT"S ME!

Sunday, September 2, 2007

You've heard from Wayne and the kids, but I have not been on the computer for several months now. The fact that I am writing, should indicate that I am slowly on my way back. The anti-rejection medication makes everyone have tremors, so it is difficult to type, but I wanted to say thank you to everyone who has written, sent cards, gifts, and letters of encouragement. The prayers have kept me going when I wanted to give up, so keep the prayer warriors at work!

Wayne has been the caregiver poster child. He is working harder than he did when he had a full time job, as this one never stops. I literally would not be here if it weren't for his loving and faithful care.

I will have a bronch and a surgical biopsy on Tuesday and will see the doctor on Wednesday. We all have to have blood tests, a chest x-ray and PFT (pulmonary function tests) and see one of the doctors once a week. After 3 or 4 months, it will be once a month, and eventually every three months. So they keep a close eye on us.

Hope you all have a safe Labor Day. I think we will take a ride this afternoon, and maybe drive to Cary where we use to live. Wayne attended a Duke Football game yesterday, but his presence didn't help, as they lost their 21st game in a row!!!! But, all is not lost, as they have the best graduation rate in division one. They post that at the games, since their record is so bad. Crystal came and sat with me.

Love and praise to all of you.

Joy