Joy continues to exhibit signs of improvement but nothing startling that would make headlines. She had possibly, her best day since 7/1 on Monday. Noting earth shattering, but completed her required exercises and was not completely wiped out when she got home.
Although it was a long 9 hour day with her lab work and CT Scan in the morning, surgeon appointment in mid afternoon and late afternoon with her primary transplant team physician, the day went well until we got home. Lab work showed some progress and the need to adjust a couple meds. Surgeon visit went well and validated that it was not an "IF" but a "WHEN" they would do the stomach surgery. We all agree that she needs to build more strength before another surgery. Her primary physician is still concerned that some signs of pneumonia remains and the biopsy cultures are not clinically conclusive at this time. She will have a bronc and lab studies next week and clinic appointment with primary physician the following day. Lung function has improved but remains low at 62% (I believe).
I was successful in getting the Rx for the Feeding Tube Declogging Kit that I mentioned earlier and not a moment to soon. Before giving Joy her evening meal tray last night, I attempted without success to flush the feeding tube. Crystal and I worked until after 10PM, sent Joy to bed without dinner with plans for me to go to Duke Pharmacy today (Wed) to fill the Rx. Finally, after another several hours this morning, I got the tube unclogged and fed her a delicious 2 hour lunch. Although I am diligent with the flushing schedule, it may require more water and more frequent flushes to an already volume intolerant patient. Such is life.
So, 2 more days of rehab, then Sat-Sun-Mon off, clinic Tue and Wed and back to rehab Thur and Fri. She has completed 7 of the required 23 days of rehab but we know she will need more than that, so the 23 is a moot point. She will continue rehab here until we head for Chicago and then resume an aggressive program there.
Happy Labor Day.
Wednesday, August 29, 2007
Saturday, August 25, 2007
Our First Trip to ER
This is our 2nd full weekend at home since June 23rd and we will use this time to rest. More later.
Joy continues with the ups and downs of recovery, but showing very slow signs of improvement. Shortness of breath with minimal activity, nausea and continued use of oxygen linger on. Her lungs are working at 57% capacity so they have room for improvement but, they will never be 100%. She still has a couple spots on her right lung believed to be remnants of the pneumonia. No bronc or biopsy was deemed necessary since the absence of negative trends. Exercise at rehab is essential to improvement and Joy has be attentive every day except yesterday.
The stomach feeding tube that I have mentioned requires flushing with water four times a day in both ports and I have done that as required. However, on occasion and for whatever reason, this tiny tube decides to plug and then the work begins. It usually requires a nurse from the supplier of the machine and nourishment company to make a house call. On Thursday, my efforts along with her two hours failed so our only option was going to the Emergency Room. We anticipated a long wait and I was prepared with her pill box and insulin test kit, etc. but not prepared for the 15 hour waiting time. We arrived at 3 PM on Thursday and left after 6 AM on Friday morning, just in time to see the sun beginning to rise. Duke Emergency Room also serves the extended community with Life Flight Helicopters and a major Trauma Center and the waiting room is large and probably seats two hundred. It was packed! Finally, after no sleep, nothing to eat for either of us (Joy missed tube feed from 6PM to 8AM which is her normal time) blood sugar levels going down, out of pain and nausea medicine and general discomfort, they unplugged the tube and we went home. Their process is similar to what I do but they use two capsules of an enzyme dissolved in water and it resolves the issue quickly. Joy has required that "kit" twice during hospitalization. It is doubtful, but I am going to try to obtain this med to avoid ER in the future. Guaranteed, it will clog again!
So, once we were home, I hooked up Joy's feeding machine, got her settled and we both slept for a couple hours prior to next scheduled round of meds and insulin. She missed her first day of exercises at the Center for Living since we have been here and I can't blame her. Later in the morning after getting her settled in for a couple hours, I left her alone for the first time since discharge and returned to Duke to finish my last session of presenting the Caregivers Guide. The pool of potential caregivers is increasing and the attendance was good and the quality of my material was well received. A great feeling! Joy did well on her own (well yah, she slept all of the time) and that was a relief.
The 90+ degree weather didn't last long and the 100+ days have continued with sweltering humidity. But I know my Chicago family and friends won't feel sorry for us after enduring the storms and excessive rain and flooding in their areas. Flooding there, drought here.......go figure!
Next up is another scheduled clinic visit Tuesday and also a clinic visit with the doctor that will do the Nissen (stomach wrap surgery). Joy just can't wait to go back into the hospital for surgery and a few days stay. She is just so excited.
Joy continues with the ups and downs of recovery, but showing very slow signs of improvement. Shortness of breath with minimal activity, nausea and continued use of oxygen linger on. Her lungs are working at 57% capacity so they have room for improvement but, they will never be 100%. She still has a couple spots on her right lung believed to be remnants of the pneumonia. No bronc or biopsy was deemed necessary since the absence of negative trends. Exercise at rehab is essential to improvement and Joy has be attentive every day except yesterday.
The stomach feeding tube that I have mentioned requires flushing with water four times a day in both ports and I have done that as required. However, on occasion and for whatever reason, this tiny tube decides to plug and then the work begins. It usually requires a nurse from the supplier of the machine and nourishment company to make a house call. On Thursday, my efforts along with her two hours failed so our only option was going to the Emergency Room. We anticipated a long wait and I was prepared with her pill box and insulin test kit, etc. but not prepared for the 15 hour waiting time. We arrived at 3 PM on Thursday and left after 6 AM on Friday morning, just in time to see the sun beginning to rise. Duke Emergency Room also serves the extended community with Life Flight Helicopters and a major Trauma Center and the waiting room is large and probably seats two hundred. It was packed! Finally, after no sleep, nothing to eat for either of us (Joy missed tube feed from 6PM to 8AM which is her normal time) blood sugar levels going down, out of pain and nausea medicine and general discomfort, they unplugged the tube and we went home. Their process is similar to what I do but they use two capsules of an enzyme dissolved in water and it resolves the issue quickly. Joy has required that "kit" twice during hospitalization. It is doubtful, but I am going to try to obtain this med to avoid ER in the future. Guaranteed, it will clog again!
So, once we were home, I hooked up Joy's feeding machine, got her settled and we both slept for a couple hours prior to next scheduled round of meds and insulin. She missed her first day of exercises at the Center for Living since we have been here and I can't blame her. Later in the morning after getting her settled in for a couple hours, I left her alone for the first time since discharge and returned to Duke to finish my last session of presenting the Caregivers Guide. The pool of potential caregivers is increasing and the attendance was good and the quality of my material was well received. A great feeling! Joy did well on her own (well yah, she slept all of the time) and that was a relief.
The 90+ degree weather didn't last long and the 100+ days have continued with sweltering humidity. But I know my Chicago family and friends won't feel sorry for us after enduring the storms and excessive rain and flooding in their areas. Flooding there, drought here.......go figure!
Next up is another scheduled clinic visit Tuesday and also a clinic visit with the doctor that will do the Nissen (stomach wrap surgery). Joy just can't wait to go back into the hospital for surgery and a few days stay. She is just so excited.
Saturday, August 18, 2007
A Cold Front Moving In
After several days of sweltering 112 degree heat index, we anticipate much cooler temperatures into the upper 90's, so we have that going for us.
The last couple of days, Joy has participated in daily rehab and completed all phases of the exercise program. Not a stellar performer, but since this is not a competition, it all counts toward recovery.
It feels so good not having to go somewhere today and tomorrow (Sat and Sun). This is our first full weekend at home since June 23rd. What a deal!
One of the highlights of her recovery has been the Food Cures book she received from her nephew Daniel Bauer. It was written by Joy Bauer and Dan requested the author to autograph it for Joy, which she did. So, it is from the real Joy Bauer to the real Joy Bauer. Kinda neat!
During my idle time while visiting Joy in the hospital last week, I continued to think about the overwhelming experience from her last discharge and homecoming. I felt this was something missing from the Support Group training and decided to be proactive and write a guide that would benefit others that follow. So, I put together my thoughts, prepared an outline and then a couple rough drafts (I alluded to this in my August 9th blog update). My presentation to the transplant social workers was received with praise and appreciation and with a little planning, this was the topic for this weeks Support Group. The questions were numerous and we only covered about a fourth of the material. Therefore, we plan to continue the topic next week until all the issues are covered. Going forward, they will incorporate this Caregiver Guide into their standard education process. It feels so good to know that this will better prepare future caregivers. Those days will still be overwhelming but they will be better prepared rather than it being a totally overwhelming surprise. If anyone is interested in a copy, send me your E-mail address and I will forward you the PowerPoint format presentation. It will be like reading a great novel, you won't be able to put it down. Not!
Well, with the 10AM items covered, it is almost Noon so I must now change hats and get back to my day job.
The last couple of days, Joy has participated in daily rehab and completed all phases of the exercise program. Not a stellar performer, but since this is not a competition, it all counts toward recovery.
It feels so good not having to go somewhere today and tomorrow (Sat and Sun). This is our first full weekend at home since June 23rd. What a deal!
One of the highlights of her recovery has been the Food Cures book she received from her nephew Daniel Bauer. It was written by Joy Bauer and Dan requested the author to autograph it for Joy, which she did. So, it is from the real Joy Bauer to the real Joy Bauer. Kinda neat!
During my idle time while visiting Joy in the hospital last week, I continued to think about the overwhelming experience from her last discharge and homecoming. I felt this was something missing from the Support Group training and decided to be proactive and write a guide that would benefit others that follow. So, I put together my thoughts, prepared an outline and then a couple rough drafts (I alluded to this in my August 9th blog update). My presentation to the transplant social workers was received with praise and appreciation and with a little planning, this was the topic for this weeks Support Group. The questions were numerous and we only covered about a fourth of the material. Therefore, we plan to continue the topic next week until all the issues are covered. Going forward, they will incorporate this Caregiver Guide into their standard education process. It feels so good to know that this will better prepare future caregivers. Those days will still be overwhelming but they will be better prepared rather than it being a totally overwhelming surprise. If anyone is interested in a copy, send me your E-mail address and I will forward you the PowerPoint format presentation. It will be like reading a great novel, you won't be able to put it down. Not!
Well, with the 10AM items covered, it is almost Noon so I must now change hats and get back to my day job.
Wednesday, August 15, 2007
Home Again II
Arrived back home after a 7:00 PM discharge and after setting up feed tube, replenishing the pill box, getting new Rx filled, revising my spreadsheets to accommodate the change in medications and times, unloading car and unpacking it is time to call it a night.
Joy not feeling that great but discharge was a viable option since she will receive the same course of treatment as she would receive in hospital. Rehab resumes tomorrow, clinic appointments next week and appointment with the physician to do the Nissen (stomach wrap surgery) a week from Tuesday. They want to move up the surgery as soon as realistically possible to minimize the complications she has been experiencing. She tolerated the endoscopy today and biopsies were sent to lab for analysis. Visual examination showed signs of a fungus type growth and acute inflammation. So, we will wait and see but until those results are known, they are treating her with the same drugs that they will probably use by anticipating the results.
Stay tuned tomorrow......................
Joy not feeling that great but discharge was a viable option since she will receive the same course of treatment as she would receive in hospital. Rehab resumes tomorrow, clinic appointments next week and appointment with the physician to do the Nissen (stomach wrap surgery) a week from Tuesday. They want to move up the surgery as soon as realistically possible to minimize the complications she has been experiencing. She tolerated the endoscopy today and biopsies were sent to lab for analysis. Visual examination showed signs of a fungus type growth and acute inflammation. So, we will wait and see but until those results are known, they are treating her with the same drugs that they will probably use by anticipating the results.
Stay tuned tomorrow......................
Tuesday, August 14, 2007
Just Another Day
It is difficult to write this blog without being terribly redundant, so I will do my best.
Nausea, headaches, limited O2. insulin up and down (low of 57---yikes) and just overall damn tired of being "sick" and not feeling well, represents the day. And it makes it worse knowing there is no light at the end of the tunnel SOON. No oncoming train, but just a long tunnel.
Best guess at this moment is that stomach acid reflux has caused or contributed to the inflamed airways and the sterile organized pneumonia (I can't define that one) and they are planning an endoscopy tomorrow morning. This is to further help diagnose her situation and also serves as a prerequisite to the Nissen (stomach wrap surgery). Her doctor plans to move that surgery up on the priority list with hopes that will alleviate many of her current problems. She has been taken off water and ice until that surgery is complete and proven successful. So, no food, no more water, no more ice chips and no more sugar-free hard candy until post surgery tests confirm she can tolerate liquids, purees, etc.
I have been told many, many times that you look forward to the blog and I want you all to know how much we look forward to your comments, cards, letters, emails and prayers. Thanks.
The Team is talking of release tomorrow, so we will wait and see but it doesn't make much difference, we are not going anywhere!
Nausea, headaches, limited O2. insulin up and down (low of 57---yikes) and just overall damn tired of being "sick" and not feeling well, represents the day. And it makes it worse knowing there is no light at the end of the tunnel SOON. No oncoming train, but just a long tunnel.
Best guess at this moment is that stomach acid reflux has caused or contributed to the inflamed airways and the sterile organized pneumonia (I can't define that one) and they are planning an endoscopy tomorrow morning. This is to further help diagnose her situation and also serves as a prerequisite to the Nissen (stomach wrap surgery). Her doctor plans to move that surgery up on the priority list with hopes that will alleviate many of her current problems. She has been taken off water and ice until that surgery is complete and proven successful. So, no food, no more water, no more ice chips and no more sugar-free hard candy until post surgery tests confirm she can tolerate liquids, purees, etc.
I have been told many, many times that you look forward to the blog and I want you all to know how much we look forward to your comments, cards, letters, emails and prayers. Thanks.
The Team is talking of release tomorrow, so we will wait and see but it doesn't make much difference, we are not going anywhere!
Monday, August 13, 2007
Not a Happy Camper Today
Camp was not fun today!
Joy's day started with nausea, headache and vomiting and exacerbated by fumes from wax and stripping the floors in adjacent hospital rooms. It gave me a headache as well. Then the doctor tells her the Organized Pneumonia is significant in both lungs and her esophagus is inflamed and he is not sure what is causing it. The biopsy has not yet isolated the strain. They suspicion ed it may be acid reflux and ordered a barium swallow test which did not show evidence of reflux. The doctor is perplexed.
Then we had some issues over getting a face mask quickly for her CPAP machine since they have determined that the BIPAP machine is no longer necessary. Since her doctor is taking a cautious approach to determining the cause of the pneumonia and inflammation, he has taken away her ice chips and sips of water except for sips to take meds. Then during her discussion with one of the Transplant Team doctors, they indicated it may take up to six months to get feeling better. Her primary care doctor told her he may send her home tomorrow depending upon how her next chest x-ray looks and neither of us are necessarily happy about that because she still does not feel well. Some times insurance requires the "treat'em and street'em" philosophy so this could be the underlying reason to hasten her stay. The doctor says he feels she is at the point where he can medicate her from home and see her in Clinic for monitoring.
So, this was not a good day. Joy is ready to leave camp against all medical advice.
She remains critical of her decision to have the lung transplant and absolutely has nothing good to say about Duke. I still cannot blame her for the first part. All of this and she still cannot eat or drink for at least a couple months, requires stomach surgery, more days of hospitalization and more recovery issues. But, what is done is done and I just hope she doesn't give up. That, I am not sure of. We didn't know what we didn't know, so we must proceed.
Remember Roseann Roseannadanna (Lisa Loopner played by Gilda Radner)? "It's always something Jane". Tomorrow will be something else.
Joy's day started with nausea, headache and vomiting and exacerbated by fumes from wax and stripping the floors in adjacent hospital rooms. It gave me a headache as well. Then the doctor tells her the Organized Pneumonia is significant in both lungs and her esophagus is inflamed and he is not sure what is causing it. The biopsy has not yet isolated the strain. They suspicion ed it may be acid reflux and ordered a barium swallow test which did not show evidence of reflux. The doctor is perplexed.
Then we had some issues over getting a face mask quickly for her CPAP machine since they have determined that the BIPAP machine is no longer necessary. Since her doctor is taking a cautious approach to determining the cause of the pneumonia and inflammation, he has taken away her ice chips and sips of water except for sips to take meds. Then during her discussion with one of the Transplant Team doctors, they indicated it may take up to six months to get feeling better. Her primary care doctor told her he may send her home tomorrow depending upon how her next chest x-ray looks and neither of us are necessarily happy about that because she still does not feel well. Some times insurance requires the "treat'em and street'em" philosophy so this could be the underlying reason to hasten her stay. The doctor says he feels she is at the point where he can medicate her from home and see her in Clinic for monitoring.
So, this was not a good day. Joy is ready to leave camp against all medical advice.
She remains critical of her decision to have the lung transplant and absolutely has nothing good to say about Duke. I still cannot blame her for the first part. All of this and she still cannot eat or drink for at least a couple months, requires stomach surgery, more days of hospitalization and more recovery issues. But, what is done is done and I just hope she doesn't give up. That, I am not sure of. We didn't know what we didn't know, so we must proceed.
Remember Roseann Roseannadanna (Lisa Loopner played by Gilda Radner)? "It's always something Jane". Tomorrow will be something else.
Sunday, August 12, 2007
Improvement Noted
After a little slower morning, Joy felt better throughout the afternoon but things like showering and walking are still a little tasking. She can tolerate those activities with minimal oxygen (2 liters per minute) and is improving each day. We walked a lot this afternoon and she did magnificent.
We do not yet know the exact strain of pneumonia she has and we are hopeful that additional lab results will be available tomorrow. Discharge day is unknown and they continue several antibiotic IV's, magnesium IV's, Chemotherapy IV's, tube feeding and of course the normal bowls of meds. She continues with a productive cough, which is good.
The nineth floor roof top helipad is directly across from her window so our entertainment for the day is watching the helicopters land and take off. Free and exciting entertainment!
We do not yet know the exact strain of pneumonia she has and we are hopeful that additional lab results will be available tomorrow. Discharge day is unknown and they continue several antibiotic IV's, magnesium IV's, Chemotherapy IV's, tube feeding and of course the normal bowls of meds. She continues with a productive cough, which is good.
The nineth floor roof top helipad is directly across from her window so our entertainment for the day is watching the helicopters land and take off. Free and exciting entertainment!
Saturday, August 11, 2007
Where Joy and Wayne Hang Out
Dear Friends and Family,
We thought you would like to see some pictures where Joy and Wayne spend their days. The picture of the top is what is known as Duke South. That is where most of her doctors appointments take place. The one below this is the front of the main hospital. We all have spent many days and nights walking through those revolving doors. Joy was on the third floor in the tall building to the right. She had a great view of the picnic area. Don't think she ever got to see it, but I can vouch for the fact it was very nice. I wanted to give Wayne the night off, so Catherine will be presenting the nightly blog posting. I know I do not write nearly as well as him, so I promise not to keep him from his duties for too long. Joy's day was not quite as good as yesterday. She had a headache most of the day and also experienced what we call quite a bit of "productive coughing." Translation: When they do a lung transplant, most if not all the nerves are cut eliminating ones ability to cough. You have to re-learn how to do that. Although the coughing can be contributed to her illness, it is a really good thing that she is able to do this. Overall she has some general fatigue, but was handling all her medications very well. There was no news on the type of strain that she has and is expected to stay in the hospital a few more days. The temperature in Raleigh has been about 105 with a heat index of about 112. Y'all stay cool down there, ya hear!!!! Well that is about it for today. Thank you for tuning in to Words Of Joy From Duke. Until next time, y'all stay cool where ever you are and GOD BLESS. Catherine
P.S. Call me silly, but I have found if I click on the picture, they will open up bigger in another window.
Friday, August 10, 2007
Pneumonia
Joy had another pretty good day which included some walking, resting and much needed sleep albeit hit and miss. You all know you do not come to the hospital to sleep.
The preliminary results from the biopsy indicate pneumonia and the doctor awaits further analysis to determine the exact strain. In the interim, they continue several antibiotics with plans to add additional meds when more lab results are known.
Hopefully, a few days of treatment will suffice and she can return home and back to rehab. She needs time to rebuild her strength and stamina prior to having the stomach surgery. The feeding tube is becoming sore but she is tolerating the "nothing to eat" program extremely well. She didn't know ice chips would taste so good. They removed stitches today from several sites but left the staples in her main incision, allowing for more time to heal. She is anxious to get those wire staples removed.
After talking to and coordinating information from three of our other transplant friends, I would say Joy's progress is on-track or slightly better than theirs. It is somewhat comforting for her to know that she is following a relatively common track although a rough experience at best.
Tomorrow is another day. Good night.
The preliminary results from the biopsy indicate pneumonia and the doctor awaits further analysis to determine the exact strain. In the interim, they continue several antibiotics with plans to add additional meds when more lab results are known.
Hopefully, a few days of treatment will suffice and she can return home and back to rehab. She needs time to rebuild her strength and stamina prior to having the stomach surgery. The feeding tube is becoming sore but she is tolerating the "nothing to eat" program extremely well. She didn't know ice chips would taste so good. They removed stitches today from several sites but left the staples in her main incision, allowing for more time to heal. She is anxious to get those wire staples removed.
After talking to and coordinating information from three of our other transplant friends, I would say Joy's progress is on-track or slightly better than theirs. It is somewhat comforting for her to know that she is following a relatively common track although a rough experience at best.
Tomorrow is another day. Good night.
Thursday, August 9, 2007
Joy Remains in the Hospital
Joy had a very restfull night and slept the best she has in weeks. Early this morning, she had a lung biopsy surgical procedure and has recovered nicely. They removed a considerable amount of fluid and are awaiting initial lab results for preliminary diagnosis. Infection and/or rejection are probable, but time will tell. Until those results are known and specific treatments are determined, they are giving her several antibiotic and rejection medicine IV's. They are letting her bedrest with 2 lpm O2. Depending upon her status tomorrow, we will probably start walking the halls and I am sure this will further reveal how well she can tolerate activity once again.
Length of stay is unknown and will depend upon diagnosis of the problem and subsequent treatment. She has done everything asked of her and once again, it is the doctors time to fix the problem so we can move on. And, we are confident they will.
I met with our social worker today to discuss the pre-discharge education and the overwhelming issues that confront the caregivers. She asked me to prepare a detailed presentation of our experiences along with my spreadsheets, charts, necessary durable medical equipment and detailed memos and she will use this in her future support group meetings. If time and scheduling allows, she will plan her agenda to cover this topic while we are still here. My desire is to better prepare and educate future caregivers to minimize the tremendous responsibilites that await them at home.
Length of stay is unknown and will depend upon diagnosis of the problem and subsequent treatment. She has done everything asked of her and once again, it is the doctors time to fix the problem so we can move on. And, we are confident they will.
I met with our social worker today to discuss the pre-discharge education and the overwhelming issues that confront the caregivers. She asked me to prepare a detailed presentation of our experiences along with my spreadsheets, charts, necessary durable medical equipment and detailed memos and she will use this in her future support group meetings. If time and scheduling allows, she will plan her agenda to cover this topic while we are still here. My desire is to better prepare and educate future caregivers to minimize the tremendous responsibilites that await them at home.
Wednesday, August 8, 2007
Back In The Hospital
All things considered, Joy had a reasonable day yesterday with excercise rehab and came home very exhausted, but as expected.
We awoke about 5' ish this morning with Joy experiencing extreme shortness of breath and difficulty breathing. We put her on O2 starting with 2 lpm and eventually increased that to 6 lpm when she de-saturated to 71%. She was somewhat stable then began an episode of considerable coughing (which is good) but this really took her breath away to the point she just couldn't breathe. Just as I was going to call 911, she began to slow down and I paged the Transplant Team and they suggested I bring her to the clinic for examination immediately. She was scheduled for an appointment tomorrow. They checked her over and quickly determined they must re-admit her but that the wait would be long today since the hospital was at 100% capacity. We arrived at the clinic about 11' ish and she got to her room at 7:30 PM tonight. Both of us are a little tired. I waited until they got the necessary histories, vitals, on-call physician visit, etc. and headed home for a little rest.
Very scary morning, for both of us.
Something that some of you that know Joy really well and know her love for Duke will be surprised, maybe shocked to learn that she hates the place and wishes she never heard of lung transplant. I could agree with her on the second part or at least for now. This is a very, very tough surgical process. But if we had not had it done and she didn't survive the year, then the decision would have been questionable. We continue to place her survival in the hands of the Duke Transplant Team and believe this problem can be fixed but selfishly, we want that accomplished sooner and without so much pain and discomfort. We saw one of our "new" lung transplant friends leaving today for home-home and his surgery was May 1st and he got along fairly well with only two re-admits for rejection.
My guess is that Joy has severe rejection despite the bunny medicine and the chemo IV she has taken. Bronc tomorrow (don't know if it will be biopsy--hope so) and some more tests, meds and stabilization. She has lost another 16 lbs since surgery on top of the weight she had to lose pre-transplant and is looking pretty good. Now, if she only felt that way.
Long day, good night.
We awoke about 5' ish this morning with Joy experiencing extreme shortness of breath and difficulty breathing. We put her on O2 starting with 2 lpm and eventually increased that to 6 lpm when she de-saturated to 71%. She was somewhat stable then began an episode of considerable coughing (which is good) but this really took her breath away to the point she just couldn't breathe. Just as I was going to call 911, she began to slow down and I paged the Transplant Team and they suggested I bring her to the clinic for examination immediately. She was scheduled for an appointment tomorrow. They checked her over and quickly determined they must re-admit her but that the wait would be long today since the hospital was at 100% capacity. We arrived at the clinic about 11' ish and she got to her room at 7:30 PM tonight. Both of us are a little tired. I waited until they got the necessary histories, vitals, on-call physician visit, etc. and headed home for a little rest.
Very scary morning, for both of us.
Something that some of you that know Joy really well and know her love for Duke will be surprised, maybe shocked to learn that she hates the place and wishes she never heard of lung transplant. I could agree with her on the second part or at least for now. This is a very, very tough surgical process. But if we had not had it done and she didn't survive the year, then the decision would have been questionable. We continue to place her survival in the hands of the Duke Transplant Team and believe this problem can be fixed but selfishly, we want that accomplished sooner and without so much pain and discomfort. We saw one of our "new" lung transplant friends leaving today for home-home and his surgery was May 1st and he got along fairly well with only two re-admits for rejection.
My guess is that Joy has severe rejection despite the bunny medicine and the chemo IV she has taken. Bronc tomorrow (don't know if it will be biopsy--hope so) and some more tests, meds and stabilization. She has lost another 16 lbs since surgery on top of the weight she had to lose pre-transplant and is looking pretty good. Now, if she only felt that way.
Long day, good night.
Monday, August 6, 2007
Rehab Day One
Joy had a two hour reassessment evaluation this morning at the Center for Living on Duke Campus and they will use this information to manage her exercise process over the coming weeks. We returned for a modified session this afternoon and she tolerated it better than she expected. Joy met a new pre-transplant candidate that started the process after Joy had surgery and he thought she was starting her rehab for the first time. She responded, " I am but this is my first day back after transplant". He was amazed and told her she looked better than a couple other recent tranplant patients that he had met. Hopefully, this will provide some inspiration to him. The only one that remains from Joy's original group is still awaiting a donor and has been on the Active list since February. She has been living here in temporary housing since that time, just like we are! Despite that, she is very positive and remains upbeat.
Although our daily schedule has not changed, we are finding ways to manage the process better and becoming more efficient. Other than providing Joy the supplies and equipment, she is doing the insulin testing and injections herself and Crystal is still coming each evening after work to administer the chemo therapy IV. This drug takes an hour or so to run so while Crystal stays with Joy to monitor the IV, I now use that time to run errands. While Joy was in rehab today, I stayed in the lobby in a big comfortable chair and even dozed off for a few moments. So there Laraine, I took a nap!
It is now 5:35PM and Joy is taking a well deserved nap but all good things must come to and end so I need to awaken her and serve her a gourmet meal and then Crystal can administer the chemo. What a fine life she leads, being waited on like this.
Although our daily schedule has not changed, we are finding ways to manage the process better and becoming more efficient. Other than providing Joy the supplies and equipment, she is doing the insulin testing and injections herself and Crystal is still coming each evening after work to administer the chemo therapy IV. This drug takes an hour or so to run so while Crystal stays with Joy to monitor the IV, I now use that time to run errands. While Joy was in rehab today, I stayed in the lobby in a big comfortable chair and even dozed off for a few moments. So there Laraine, I took a nap!
It is now 5:35PM and Joy is taking a well deserved nap but all good things must come to and end so I need to awaken her and serve her a gourmet meal and then Crystal can administer the chemo. What a fine life she leads, being waited on like this.
Saturday, August 4, 2007
A Look at Our Day
First of all, Joy is feeling better and gradually gaining strength. She wants to eat something or anything. Imagine that! She spends most of the day in the recliner and taking advantage of the weekend to rest prior to beginning her exercise routine at the Center of Living on Monday. We went to the clinic for blood draws and Pulmonary Function Test yesterday. She has a clinic appointment scheduled for this Thursday with various tests at 8:00 AM and then with a doctor at 1:00PM. A lot of hurry up and wait time with these appointments.
The kids have been great. In age order, Crystal lives locally and has been in and out throughout the process and has been a lot of help these last couple days......more later. Kevin lives in Houston and has flown back and forth several times and was a big help the day Joy was released from the hospital. Caroline lives about three hours away and has also been in and out and always willing to be here at a moments notice. Her planned visit this weekend changed with her daughter Kierra coming down with the stomach flu. Get well Kierra. Cathy and Kayce have been doing a great job with blog assistance, FedEx our mail and anything else we need from home, maintaining the house duties, sending letters/phone calls and caring for Kayce. So, we are well covered. Thanks a bunch!
This will be long but I want to document for you the requirements, emotions and anxieties that come from what is a typical day for us.
Thanks in part to the training from my good friend Super Dave Selke, I am using those experiences in organization and overall process management to help schedule and manage our day. I can't post the spreadsheets that I have developed here, but will try to give you a narrative description of those helpful tools.
Our day begins at 6:00AM for insulin testing, injection, flushing the feeding tube ports and one medication. Joy allows me time for coffee and a shower here. Then at 8:00AM, I do the vitals (BP, weight, O2 Sat, HR, temp, PFT and give her morning dose of Prograf (rejection med). Now I get to make the beds, laundry, collect all of the trash and disposables, update my logs and spreadsheets and assist Joy with ice, bathroom, walking, etc.. At Noon, I apply medicine to her incisions, flush the tube ports again, test/inject insulin and give her more meds. After these items are complete, Joy can rest and I glance at the computer a little and continue with other household chores and assist Joy with conveniences, heat packs, prepare a shopping list and try to fix something for lunch. The time slot from Noon to 5:00PM is designed to accommodate Joy's exercise time at the Center for Living (M-F). The 5:00PM consists of more incision care, tube flushes and a manually administered tube protein. At 6:00PM, we check the vitals again, administer more meds, test/inject insulin, flush her feed tube ports prior to setting up to begin her nightly tube feed nourishment, using the electric IV type pump. We also set up and begin the hour long chemo therapy IV drug (more about that later). Then at 9:00PM, she gets another insulin injection. At 10:00PM, we apply more med to her incision, flush the feed tube ports and give her another bowl of meds. Finally, at 11:30-Midnight she gets more meds and tests and injects more insulin, we get her breathing machine set up and insure she has things at arms reach and after an 18 hour day, we go to sleep.
We thought we were pretty well prepare with understanding and knowledge of the lung transplant surgery but ultimately, we had no idea!!!!!!!
We thought we were pretty well prepared with understanding and knowledge of the post transplant caregivers duties, but we (I) had no idea!!!!!!!!!!! Read on.
Now, let me whine a bit. For the last couple weeks, every single thing I mentioned earlier was exactly what the trained RN's did during the day for Joy and they even had techs to do vitals, assist with bathroom duties, picking up all of the disposable trash, bringing in supplies , getting ice / water for meds and assist in bathing her. The insulin injections, setting up feeding machine and consolidating all the required functions to build a schedule was damn near overwhelming. But late yesterday afternoon, the home health care provider brought out the machine, chemotherapy IV med along with the applicable supplies and began her in home training to administer this product. It was when she laid out a chucks pad on the table, the chemo drug, 8 syringes, special gloves and whatever else, I knew I was getting extremely nervous about this. Then she started the training...............be careful with this because it can cause this, you must turn this off first and then start this but then restart this before you do that or you will cause this and you can't do that................................About that time, Crystal walked through the door or I would have been totally overwhelmed. Period! Crystal completed the training and has agreed to come here every night after work to complete this process. This med will end on Aug. 15th and be supplemented with a new drug in tablet form. Fantastic!! Joy and I consider ourselves to be slightly above the average lay person in medical knowledge, but neither of us could have prepared for this. How a person (s) that possess limited medical knowledge could do all of this baffles me.
Joy is a good patient and has been used to better care than what I am giving her but we are making it work and it will get better as the days and months roll. It is no small wonder why the transplant patient and the caregivers are not provided with minute details of the process..................no one would go through it!
We will keep you posted with frequent blog updates but not necessarily every day. Something has "gotta" go.
Thanks for listening. Now I must get back to work.
Wayne, BN, MSN, PHD,MD, MSW, M-DIV, Critical Care
The kids have been great. In age order, Crystal lives locally and has been in and out throughout the process and has been a lot of help these last couple days......more later. Kevin lives in Houston and has flown back and forth several times and was a big help the day Joy was released from the hospital. Caroline lives about three hours away and has also been in and out and always willing to be here at a moments notice. Her planned visit this weekend changed with her daughter Kierra coming down with the stomach flu. Get well Kierra. Cathy and Kayce have been doing a great job with blog assistance, FedEx our mail and anything else we need from home, maintaining the house duties, sending letters/phone calls and caring for Kayce. So, we are well covered. Thanks a bunch!
This will be long but I want to document for you the requirements, emotions and anxieties that come from what is a typical day for us.
Thanks in part to the training from my good friend Super Dave Selke, I am using those experiences in organization and overall process management to help schedule and manage our day. I can't post the spreadsheets that I have developed here, but will try to give you a narrative description of those helpful tools.
Our day begins at 6:00AM for insulin testing, injection, flushing the feeding tube ports and one medication. Joy allows me time for coffee and a shower here. Then at 8:00AM, I do the vitals (BP, weight, O2 Sat, HR, temp, PFT and give her morning dose of Prograf (rejection med). Now I get to make the beds, laundry, collect all of the trash and disposables, update my logs and spreadsheets and assist Joy with ice, bathroom, walking, etc.. At Noon, I apply medicine to her incisions, flush the tube ports again, test/inject insulin and give her more meds. After these items are complete, Joy can rest and I glance at the computer a little and continue with other household chores and assist Joy with conveniences, heat packs, prepare a shopping list and try to fix something for lunch. The time slot from Noon to 5:00PM is designed to accommodate Joy's exercise time at the Center for Living (M-F). The 5:00PM consists of more incision care, tube flushes and a manually administered tube protein. At 6:00PM, we check the vitals again, administer more meds, test/inject insulin, flush her feed tube ports prior to setting up to begin her nightly tube feed nourishment, using the electric IV type pump. We also set up and begin the hour long chemo therapy IV drug (more about that later). Then at 9:00PM, she gets another insulin injection. At 10:00PM, we apply more med to her incision, flush the feed tube ports and give her another bowl of meds. Finally, at 11:30-Midnight she gets more meds and tests and injects more insulin, we get her breathing machine set up and insure she has things at arms reach and after an 18 hour day, we go to sleep.
We thought we were pretty well prepare with understanding and knowledge of the lung transplant surgery but ultimately, we had no idea!!!!!!!
We thought we were pretty well prepared with understanding and knowledge of the post transplant caregivers duties, but we (I) had no idea!!!!!!!!!!! Read on.
Now, let me whine a bit. For the last couple weeks, every single thing I mentioned earlier was exactly what the trained RN's did during the day for Joy and they even had techs to do vitals, assist with bathroom duties, picking up all of the disposable trash, bringing in supplies , getting ice / water for meds and assist in bathing her. The insulin injections, setting up feeding machine and consolidating all the required functions to build a schedule was damn near overwhelming. But late yesterday afternoon, the home health care provider brought out the machine, chemotherapy IV med along with the applicable supplies and began her in home training to administer this product. It was when she laid out a chucks pad on the table, the chemo drug, 8 syringes, special gloves and whatever else, I knew I was getting extremely nervous about this. Then she started the training...............be careful with this because it can cause this, you must turn this off first and then start this but then restart this before you do that or you will cause this and you can't do that................................About that time, Crystal walked through the door or I would have been totally overwhelmed. Period! Crystal completed the training and has agreed to come here every night after work to complete this process. This med will end on Aug. 15th and be supplemented with a new drug in tablet form. Fantastic!! Joy and I consider ourselves to be slightly above the average lay person in medical knowledge, but neither of us could have prepared for this. How a person (s) that possess limited medical knowledge could do all of this baffles me.
Joy is a good patient and has been used to better care than what I am giving her but we are making it work and it will get better as the days and months roll. It is no small wonder why the transplant patient and the caregivers are not provided with minute details of the process..................no one would go through it!
We will keep you posted with frequent blog updates but not necessarily every day. Something has "gotta" go.
Thanks for listening. Now I must get back to work.
Wayne, BN, MSN, PHD,MD, MSW, M-DIV, Critical Care
Thursday, August 2, 2007
SHE'S HOME
Dear friends and family,We wanted to let you all know that Joy was released from Duke and arrived "home" at 2:30 this afternoon. She enjoyed stepping out into the sunshine and the fresh air for the first time in a month. We thought you all would enjoy seeing this picture taken of her this morning. Thank you all again for all your kind words, thoughts, prayers and best wishes. You all played a huge part in why she is where she is today. I know she is going to sleep good tonight. God Bless, Catherine
Wednesday, August 1, 2007
Homebound
Joy was advised that she will be released from the hospital tomorrow.
Between the flurry of pre-release activity, Joy walked fourteen laps and would have been able to walk an additional four later tonight but was constricted by the nightly feeding tube and a couple last minute IV's. Ultimately, she could have made the ever elusive mile but we were satisfied knowing that it was within her grasp. She now has a new light weight walker added for stability and to carry O2, but we do not anticipate she will required the use of either for any extended period of time.
The day was almost overwhelming with scheduling and training for diabetes issues, home health care for feeding and new BiPap breathing machine, reviewing all the meds I purchased last night, getting new Rx for more meds and blood sugar testing, training on tube feeding and flushing those stomach tubes, wound care and probably more that I just can't remember. You just couldn't imagine what this day was like without being here. It was like learning to be an RN or Nurse Practitioner, all in a few fleeting hours. Thank God that Joy can participate in some of this. She gave herself two insulin injections today and performed admirably.
Tomorrow we start a new chapter. Coming home and getting settled in will be crazy and exhausting but once we get some routine and organization, I think we will be OK. She has a blood test appointment at the clinic on Friday, a doctor appointment at the clinic Tuesday which will encompass most of the day and Monday, she will be re-evaluated at the Center of Living Pepsico Building and begin the daily four hour exercise routine. She is so, so excited about that!
I picked up new meds tonight and last count was twenty-two daily meds consisting of sixty-two pills or doses.
Overall, the surgery expense will be about a half million dollars but her feeding tube will save on groceries for a couple months!
So, let's see what tomorrow brings.
Between the flurry of pre-release activity, Joy walked fourteen laps and would have been able to walk an additional four later tonight but was constricted by the nightly feeding tube and a couple last minute IV's. Ultimately, she could have made the ever elusive mile but we were satisfied knowing that it was within her grasp. She now has a new light weight walker added for stability and to carry O2, but we do not anticipate she will required the use of either for any extended period of time.
The day was almost overwhelming with scheduling and training for diabetes issues, home health care for feeding and new BiPap breathing machine, reviewing all the meds I purchased last night, getting new Rx for more meds and blood sugar testing, training on tube feeding and flushing those stomach tubes, wound care and probably more that I just can't remember. You just couldn't imagine what this day was like without being here. It was like learning to be an RN or Nurse Practitioner, all in a few fleeting hours. Thank God that Joy can participate in some of this. She gave herself two insulin injections today and performed admirably.
Tomorrow we start a new chapter. Coming home and getting settled in will be crazy and exhausting but once we get some routine and organization, I think we will be OK. She has a blood test appointment at the clinic on Friday, a doctor appointment at the clinic Tuesday which will encompass most of the day and Monday, she will be re-evaluated at the Center of Living Pepsico Building and begin the daily four hour exercise routine. She is so, so excited about that!
I picked up new meds tonight and last count was twenty-two daily meds consisting of sixty-two pills or doses.
Overall, the surgery expense will be about a half million dollars but her feeding tube will save on groceries for a couple months!
So, let's see what tomorrow brings.
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