Joy was freed from confinement late Friday afternoon. After meeting with the home health care provider, Joy traveled with me to run several errands and tolerated that activity quite well. Once we were back at the hotel for the evening, it took a couple hours to get meds and insulin supplies reorganized, pump/feed set up going and adapting to a new schedule. To say she was tired would be an understatement.
The weekend will be for R&R , a few more errands, maybe some Duke baseball for Wayne and dinner with transplant friends on Sunday afternoon. It will be a BYOC (bring your own cans) for Joy. Actually, this time around she can eat liquid or soft pureed foods for comfort or pleasure while relying 100% on the cans for nourishment so maybe we can allow her to sit at the table and eat some dessert.
She has a clinic appointment for lab work on Monday and hopefully will be ready to hop in the family truckster on Tuesday for a couple days ride home.
Our next return trip to Durham will be in late June. We have been here in January, February, March, April but somehow will manage to miss May. How could that happen? Maybe I should not jinx that!
More to come..............
Saturday, April 26, 2008
Thursday, April 24, 2008
IT WORKS
Well, sew my head to the carpet! The procedure to remove the kink in the tube was brief and productive. The tube flushes as designed and they will begin overnight tube feedings tonight. Thanks to an imaginative resident and convincing the interventional radiologist, correcting this problem by inserting a wire through the tube is a first for Duke!
Stomach pain continues but showing signs of progress. She has five incisions in that area so it makes sense that she should have some pain but this has been a little more intense than anticipated.
Rejection IV medication is complete, the low white blood cell count has been treated for now and if feeding goes as planned tonight, plans are for discharge tomorrow (Friday). We plan to hang out here for a couple days just to better ensure that all the pieces are working prior to heading home. Besides, she is not looking forward to the 900 mile trip in the family truckster on the day that she is discharged.
Maybe, possibly, hopefully Joy is making some progress.
Stomach pain continues but showing signs of progress. She has five incisions in that area so it makes sense that she should have some pain but this has been a little more intense than anticipated.
Rejection IV medication is complete, the low white blood cell count has been treated for now and if feeding goes as planned tonight, plans are for discharge tomorrow (Friday). We plan to hang out here for a couple days just to better ensure that all the pieces are working prior to heading home. Besides, she is not looking forward to the 900 mile trip in the family truckster on the day that she is discharged.
Maybe, possibly, hopefully Joy is making some progress.
Wednesday, April 23, 2008
The Tube
Despite all efforts, the feeding tube remains clogged since Monday night. A resident surgeon even tried without success and ordered a series of x-rays yesterday to determine the cause. The tube is bent like a fishhook at the end which is in the small intestine so tomorrow bright and early, they plan to run a wire through the tube guided by contrast and imaging technology, and attempt to correct the malfunction. The surgeon said he was NOT optimistic that this procedure would resolve the blockage.
What will they do if this doesn't work? I don't want to think about that but I (we) too, are not confident this will be an easy resolve.
In the interim, she goes without tube feeds and relys on the ultra small full liquid diet meals she is served. But, for what ever reason (s), the nausea has all but disappeared. FOR NOW? I think it was the M&M's and two small bites of a Krispy Kreme that I prescribed for her.
Pain is still a significant issue and in addition to the tablet narcotics and morphine injections, they added another pain family medicine designed to address stabbing pains. Additionally, they have added pain relieving patches to the pain sights. A theory, and only one doctors opinion is that a nerve was cut or damaged and if so, the pain "should" go away in time. Medical school must have a class on learning ambiguous terminology such as the use of should, maybe, could, may, possibly, might, soon, in-a-minute, be right back, give me a second........................just to name a few. Duke has no exclusive on that however.
Joy has had the second of three infusions of steroids to treat the rejection and tolerating that OK.
Lab tests indicate an extreme low white cell blood count and low immune system so they are giving her injections to boost those numbers. They tell her that her body is absolutely prime for a full blown infection so in addition to these meds, they have re-added the medicine she was taking for the Candida esophagus infection, just to make darn sure.
So tomorrow, we will know if the corrective procedure works and if not, what will he do next if it does not (we already know that one) and how soon.
It is what it is.
What will they do if this doesn't work? I don't want to think about that but I (we) too, are not confident this will be an easy resolve.
In the interim, she goes without tube feeds and relys on the ultra small full liquid diet meals she is served. But, for what ever reason (s), the nausea has all but disappeared. FOR NOW? I think it was the M&M's and two small bites of a Krispy Kreme that I prescribed for her.
Pain is still a significant issue and in addition to the tablet narcotics and morphine injections, they added another pain family medicine designed to address stabbing pains. Additionally, they have added pain relieving patches to the pain sights. A theory, and only one doctors opinion is that a nerve was cut or damaged and if so, the pain "should" go away in time. Medical school must have a class on learning ambiguous terminology such as the use of should, maybe, could, may, possibly, might, soon, in-a-minute, be right back, give me a second........................just to name a few. Duke has no exclusive on that however.
Joy has had the second of three infusions of steroids to treat the rejection and tolerating that OK.
Lab tests indicate an extreme low white cell blood count and low immune system so they are giving her injections to boost those numbers. They tell her that her body is absolutely prime for a full blown infection so in addition to these meds, they have re-added the medicine she was taking for the Candida esophagus infection, just to make darn sure.
So tomorrow, we will know if the corrective procedure works and if not, what will he do next if it does not (we already know that one) and how soon.
It is what it is.
Monday, April 21, 2008
Monday Evening Edition
The loyal readers of this blog will remember not so long ago when I documented the feeding tube clogging and what an arduous task it was to unclog. Trips to the emergency room, using the special Duke Declogging Kit and ultimately replacement of the tube were ever so frequent. Guess what?
After only three days, the damn thing is clogged, the nurse cannot get it unclogged and has requested the kit from pharmacy. I can't wait until tomorrow to see the results of this one!
Pain management remains a big challenge but the nausea is minimal at this moment. Time will tell and it is much to early to bring out the pep band for this one. Joy is eating a few bites of the very soft diet they have allowed.
The surgeon said he would give the "go ahead" to the transplant team to begin treating the rejection and if so, this will eliminate the need for us to chance this with home health care in Illinois. When and how long this procedure will take is unknown.
Stay tuned.
After only three days, the damn thing is clogged, the nurse cannot get it unclogged and has requested the kit from pharmacy. I can't wait until tomorrow to see the results of this one!
Pain management remains a big challenge but the nausea is minimal at this moment. Time will tell and it is much to early to bring out the pep band for this one. Joy is eating a few bites of the very soft diet they have allowed.
The surgeon said he would give the "go ahead" to the transplant team to begin treating the rejection and if so, this will eliminate the need for us to chance this with home health care in Illinois. When and how long this procedure will take is unknown.
Stay tuned.
Sunday, April 20, 2008
Sunday Night Update
Severe surgery pain continues but becoming more managable with the continuaton of the morphine IV. Four IV's are running through three lines in her arms and hand. Her veins are really being difficult in sustaining manageable lines. Another downside of the transplant and medications.
For the first time in a week, she ventured outside of the room for a walk and she appears to have tolerated a very small sampling of soft foods for dinner tonight. We are anxious to see what results or progress she has with introducing real food again. Feeding tube continues to run 24 hours and will continue at that rate until discharge.
Her surgeon called her from home yesterday and today to check on her and will be in tomorrow along with everyone else returning from the weekend.
One of our dearest transplant friends has not been eating and probably requires re-insertion of a feeding tube but he is displaying early signs of giving up and unwilling to go through surgery again. He has no appetite and never hungry and void of balanced nutrition (sounds like Joy) despite his wife's encouragement. This is typical of some of the transplant patients that we know. This is a tough one.......................he has been through so very much. Kidneys, liver and eyesight now failing primarily due to effects of meds.
For the first time in a week, she ventured outside of the room for a walk and she appears to have tolerated a very small sampling of soft foods for dinner tonight. We are anxious to see what results or progress she has with introducing real food again. Feeding tube continues to run 24 hours and will continue at that rate until discharge.
Her surgeon called her from home yesterday and today to check on her and will be in tomorrow along with everyone else returning from the weekend.
One of our dearest transplant friends has not been eating and probably requires re-insertion of a feeding tube but he is displaying early signs of giving up and unwilling to go through surgery again. He has no appetite and never hungry and void of balanced nutrition (sounds like Joy) despite his wife's encouragement. This is typical of some of the transplant patients that we know. This is a tough one.......................he has been through so very much. Kidneys, liver and eyesight now failing primarily due to effects of meds.
Saturday, April 19, 2008
Saturday Night Update
Joy's extreme pain continues despite the self administered morphine IV doses. Last evenings lab results gave indications that she may have suffered a heart attack so the staff was out in full force testing and monitoring her until daybreak but it appears now after further tests and review that did not happen but, they continue to monitor her.
Nausea has minimized but duh, she hasn't had any food for 2 1/2 days. They ran saline through the feeding tube today with plans to introduce nourishment tonight. They will run that for 24 hours in the hospital and should be reduced to 10-14 hours at home.
Pain management is the issue of the moment. Nothing seems to go normal for her.
Nausea has minimized but duh, she hasn't had any food for 2 1/2 days. They ran saline through the feeding tube today with plans to introduce nourishment tonight. They will run that for 24 hours in the hospital and should be reduced to 10-14 hours at home.
Pain management is the issue of the moment. Nothing seems to go normal for her.
Surgery Update
Joy made it through the hour long surgery and experiencing extreme amount of pain and discomfort. Feeding tube was inserted and doctor spent extra time looking at previous Nissen surgery and found everything intact and as it should be. They are now giving her morphine for pain so hope it helps. They will wait 24 hours before introducing saline through the tube and if it functions properly with no leaks, etc. then they will begin round the clock feedings. Initial monitoring is crucial because the feeding nourishment significantly impacts the blood sugar levels and immunosuppressant medicine levels.
Getting very difficult to continue to see her suffer with pain, discomfort and frustration.
Getting very difficult to continue to see her suffer with pain, discomfort and frustration.
Thursday, April 17, 2008
More Surgery and Rejection Treatment
After four days of exhaustive testing, the Transplant Team is unable to arrive at a definitive diagnosis and for a change, is deferring to the stomach surgeon for answers.
He feels that the tests showed nothing that requires corrective surgery to the Nissen or stomach area and also confirms that nothing in the tests gives them a clear and concise diagnosis. He does feel that the recent and extensive esophagus infection coupled with the lack of balanced nutrition is contributing to the nausea stomach issues. Also, he recognizes the impact the significant number of meds she must take is also contributing problems especially on a relatively empty stomach.
So, tomorrow they re-install the stomach feeding tube once again and add a motility medicine to her daily regimen. The idea is to give the stomach and esophagus some time to heal and rest.
Additionally, Monday's bronc lab results show rejection and she must begin steroids for that within the next couple days.
We did confirm that the Nissen is reversible but very recent studies have shown that 5 year survival has increased from 40% to 63% for those patients with the Nissen. The doctor strongly discourages reversal and gives no guarantee that she would return to pre-transplant condition.
As I posted recently, we are not necessarily optimistic but see this process as the best alternative at this time. Don't ask her if she made the right decision to have the transplant.
He feels that the tests showed nothing that requires corrective surgery to the Nissen or stomach area and also confirms that nothing in the tests gives them a clear and concise diagnosis. He does feel that the recent and extensive esophagus infection coupled with the lack of balanced nutrition is contributing to the nausea stomach issues. Also, he recognizes the impact the significant number of meds she must take is also contributing problems especially on a relatively empty stomach.
So, tomorrow they re-install the stomach feeding tube once again and add a motility medicine to her daily regimen. The idea is to give the stomach and esophagus some time to heal and rest.
Additionally, Monday's bronc lab results show rejection and she must begin steroids for that within the next couple days.
We did confirm that the Nissen is reversible but very recent studies have shown that 5 year survival has increased from 40% to 63% for those patients with the Nissen. The doctor strongly discourages reversal and gives no guarantee that she would return to pre-transplant condition.
As I posted recently, we are not necessarily optimistic but see this process as the best alternative at this time. Don't ask her if she made the right decision to have the transplant.
Tuesday, April 15, 2008
Hospital Again
For the sixth time in less than a year, Joy was admitted to the hospital to hopefully diagnose and treat her nausea / stomach pain issues. They ran several tests Monday and today the results of which are not yet known. What we do know is that her condition remains the same. She has tests scheduled for Wednesday and Thursday and hopefully, this will provide a solution.
Neither of us are optimistic at this point but we will see.
Neither of us are optimistic at this point but we will see.
Thursday, April 10, 2008
We're Off To See the Wizard (s)
The bags are packed and the family truckster is loaded and ready for another return trip to DUMC. Appointments begin bright and early Monday.
Joy's nausea and flu like symptoms continue and gradually worsening. She feels worse now than anytime since transplant and it is becoming more of a challenge for her to be optimistic.
So we go.
Joy's nausea and flu like symptoms continue and gradually worsening. She feels worse now than anytime since transplant and it is becoming more of a challenge for her to be optimistic.
So we go.
Subscribe to:
Posts (Atom)
