We made it home safe and sound Sunday night and now trying to recover.
It was a very uncomfortable trip for Joy and I suspect it will take her days to bounce back. Back pain continues to be an issue and she feels she may have another fracture. Maybe in a few days "travel pain" will subside and she will know for sure. Mild nausea continues but the daily vomiting and violent dry heaves have subsided.
We are trying to negotiate her next scheduled visit in October to a date that will be better suitable to our schedule.
So she comes home a little better than when we went down but, I am beginning to wonder if............................
Monday, September 29, 2008
Friday, September 26, 2008
Duke Update, Again
Surgery is complete, nausea issue addressed and Joy has been discharged so we are preparing for our return trip home tomorrow.
Intense back pain has been resolved for the moment and current back pain probably residual effects of the surgery itself. All the attending physicians have indicated she has an extremely high probability of reoccuring fractures despite any/all precautions.
Nausea issue improved slightly but doctors feel this will require a "long haul" type resolution because several factors are involved in the root cause. We will see how she responds to the added motility medicine over the next month until we return to Duke for follow-up in a month.
The doctors did a lot during her week's stay and she came out better than when she went in but still has plenty of opportunity for progress.
Intense back pain has been resolved for the moment and current back pain probably residual effects of the surgery itself. All the attending physicians have indicated she has an extremely high probability of reoccuring fractures despite any/all precautions.
Nausea issue improved slightly but doctors feel this will require a "long haul" type resolution because several factors are involved in the root cause. We will see how she responds to the added motility medicine over the next month until we return to Duke for follow-up in a month.
The doctors did a lot during her week's stay and she came out better than when she went in but still has plenty of opportunity for progress.
Monday, September 22, 2008
Surgery at Duke Scheduled
The MRI conducted late Saturday revealed another compression fracture. We knew of course, that she had the one that was surgically repaired in Illinois and we knew that she had the second fracture that the doctor was waiting to see if it would heal on its own. Not only did it not heal but Duke discovered another fracture. So after discussing scheduling options with the doctors and "squeezing" them just a little, they have scheduled her for surgery here on Wednesday. We are thrilled that they will be able to do it here. To many things can go wrong with transplant patients in post surgeries and if complications arise, we feel she will be better served at Duke.
Today she had an endoscopy which revealed no infection or complications other than seeing first hand earlier suspicions that the Nissen was to tight. They loosened or increased the opening about 1/4 inch so we are hoping for some resolution to the nausea / vomiting issues. Pain and nausea are still under control with the help of IVs for each.
Lab analysis from bronc last Thursday has not revealed any infection or rejection in her lungs!
History has not necessarily been kind to her so we proceed with cautious optimism and hopeful these procedures will resolve her current issues. They cannot prevent further fractures and in fact indicate more fractures are likely. Ouch!
Today she had an endoscopy which revealed no infection or complications other than seeing first hand earlier suspicions that the Nissen was to tight. They loosened or increased the opening about 1/4 inch so we are hoping for some resolution to the nausea / vomiting issues. Pain and nausea are still under control with the help of IVs for each.
Lab analysis from bronc last Thursday has not revealed any infection or rejection in her lungs!
History has not necessarily been kind to her so we proceed with cautious optimism and hopeful these procedures will resolve her current issues. They cannot prevent further fractures and in fact indicate more fractures are likely. Ouch!
Friday, September 19, 2008
September Duke Trip Report
The drive to Durham was uneventful and Joy tolerated the trip reasonably well. She had a day to rest up prior to clinic appointments and procedures and planned to go shopping but was in to much pain so she rested until dinner. Despite my encouragement to cancel dinner plans, she forged ahead with a birthday meal with family and friends. We had a good time albeit brief and she really paid for it in pain and discomfort.
Although lab analysis results from the bronc are not back, the doctor did not find anything of concern. Other tests and procedures were within acceptable limits.
The nausea and pain concerned the Transplant Team physician and she admitted Joy to the hospital immediately. Nausea / pain was at its worst and Joy was very, very sick. Throughout the day today (Friday) she has had six different IVs, several x-rays, stomach CT Scan and Team plans an endoscopy and MRI on her back and whatever else tests they deem necessary. Nausea and pain finally managed by mid day today. Team doctor heard crackling noise in her lungs and immediately ordered three different antibiotic IVs. Fever of 102 coupled with the crackling indicated some type of infection.
So the plan is to address the stomach issues, the back pain, treat and monitor the infection and complete necessary tests over the next few days. Team doctor indicated as a last resort if all tests were inconclusive, they would "loosen" the Nissen which would allow her food to empty into the stomach on a more timely basis however, it would increase the risk of aspirating acid reflux, which of course is why the Nissen was done.
We are praying for a resolution to these issues otherwise, it will be difficult to be optimistic toward seeing her quality of life improve. Most of the things she enjoys has otherwise been stripped from her to this point.
Although lab analysis results from the bronc are not back, the doctor did not find anything of concern. Other tests and procedures were within acceptable limits.
The nausea and pain concerned the Transplant Team physician and she admitted Joy to the hospital immediately. Nausea / pain was at its worst and Joy was very, very sick. Throughout the day today (Friday) she has had six different IVs, several x-rays, stomach CT Scan and Team plans an endoscopy and MRI on her back and whatever else tests they deem necessary. Nausea and pain finally managed by mid day today. Team doctor heard crackling noise in her lungs and immediately ordered three different antibiotic IVs. Fever of 102 coupled with the crackling indicated some type of infection.
So the plan is to address the stomach issues, the back pain, treat and monitor the infection and complete necessary tests over the next few days. Team doctor indicated as a last resort if all tests were inconclusive, they would "loosen" the Nissen which would allow her food to empty into the stomach on a more timely basis however, it would increase the risk of aspirating acid reflux, which of course is why the Nissen was done.
We are praying for a resolution to these issues otherwise, it will be difficult to be optimistic toward seeing her quality of life improve. Most of the things she enjoys has otherwise been stripped from her to this point.
Monday, September 1, 2008
Labor Day Update
The past few days and weeks have been a little like the character in the movie "Groundhog Day". Very repetitive. Gets up, throws up, takes a lot of meds and narcotics, back to bed for rest (doctors request) gets up for a couple hours in the evening and back to bed. Back brace and narcotics have seemed to help back pain slightly but we don't really know if that means the fracture is healing or if the pain meds are disguising the problem.
Regardless, conventional wisdom tells us that we need to make the mid September Duke clinic appointments / procedures soooooooooooooooooo, somehow we will get her there. Blood tests have indicated a need to increase one of her anti-rejection meds several times so we do not know if the pain meds are impacting their effectiveness or if she has some rejection issues which would be the major reason for our visit.
So in a couple weeks, we load the family truckster and head for North Carolina. I am sure she will enjoy the trip!
Regardless, conventional wisdom tells us that we need to make the mid September Duke clinic appointments / procedures soooooooooooooooooo, somehow we will get her there. Blood tests have indicated a need to increase one of her anti-rejection meds several times so we do not know if the pain meds are impacting their effectiveness or if she has some rejection issues which would be the major reason for our visit.
So in a couple weeks, we load the family truckster and head for North Carolina. I am sure she will enjoy the trip!
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