The chronic diarrhea continued throughout the night and morning hours and had her totally wiped out which limited her mobility. Finally in early afternoon, she received a med that helped and she pushed herself to walk four laps with Kevin and me. Then late afternoon, Joy walked for the first time without the aid of the walker. Kevin and I lightly supported her on each side and pulled the walker behind as a back up. We walked three laps before returning to bed for early evening feeding tube and another round of chemo.
The Transplant Coordinators and the pharmacist were in today to talk more about going home issues including meds and home health care products and services. They still plan to train Joy and me on the insulin monitoring and injections and also how to clean and administer nourishment for her stomach feeding tubes. One of the Transplant Team surgeons indicated he was considering her for release very soon once these loose ends are finalized.
Getting her home will be nice but, the thought of not having the security blanket of the doctor and nursing care available as it is in the hospital makes us both a little anxious. This will be a big adjustment to say the least.
We are most appreciative of your cards and letters and thank you again for your thoughtful consideration.
Tuesday, July 31, 2007
Monday, July 30, 2007
Another Good Day
Joy continues to deal with chronic diarrhea, the cause of which is unknown and remains a concern. She feels a couple particular meds may be the root cause but the staff is looking into a resolution.
No bronc today and she had the final two drainage tubes removed which made her feel better. She is still using the bipap breathing assistance machine at night and continues to receive nourishment through her feeding tube 6PM to 9AM each night, until she returns for the stomach surgery. Surgical biopsy may be this week or next which will hopefully determine the effectiveness of her rejection therapy.
She walked with assistance and some O2 three separate times for total of ten laps. Blood sugar continues to fluctuate but within manageable range.
They are considering sending her home possibly later this week, depending upon the diarrhea diagnosis and treatment and how much she progresses with the walking.
A women that Joy met in rehab also awaiting transplant, received her lungs a couple weeks ago and although she is progressing, she anticipates being in the hospital another couple weeks. Interestingly, her husband had a heart attack which required by-pass surgery and is now in the same room with her. "Ya think it might have been stress induced" ??????
No bronc today and she had the final two drainage tubes removed which made her feel better. She is still using the bipap breathing assistance machine at night and continues to receive nourishment through her feeding tube 6PM to 9AM each night, until she returns for the stomach surgery. Surgical biopsy may be this week or next which will hopefully determine the effectiveness of her rejection therapy.
She walked with assistance and some O2 three separate times for total of ten laps. Blood sugar continues to fluctuate but within manageable range.
They are considering sending her home possibly later this week, depending upon the diarrhea diagnosis and treatment and how much she progresses with the walking.
A women that Joy met in rehab also awaiting transplant, received her lungs a couple weeks ago and although she is progressing, she anticipates being in the hospital another couple weeks. Interestingly, her husband had a heart attack which required by-pass surgery and is now in the same room with her. "Ya think it might have been stress induced" ??????
Sunday, July 29, 2007
Another Decent Day
Her day was very much like I described in the last two days except that her walking was limited to ten laps. She was a little dizzy and weak this morning which shortened her overall walk time. They are giving her two diuretics, one of which is Lasik (sp?) and the combination really pulls the fluids out of her but fortunately, she recovers around noon. The continued chemotherapy drug may be impacting the fatigue type issue as well. Overall, I think she is progressing without setbacks or snags.....................................at least for now.
We have talked about her short term, day by day, one step at a time goals with her intention to wean from the oxygen and then the walker. Ultimately, just walking with me by her side for moral support and also being there as a backup.
Tomorrow, will probably see the resumption of the bronc, more frequent doctor visits (as opposed to the weekend), going home education, pharmacist, insulin staff and I am sure I forgot something else.
We have talked about her short term, day by day, one step at a time goals with her intention to wean from the oxygen and then the walker. Ultimately, just walking with me by her side for moral support and also being there as a backup.
Tomorrow, will probably see the resumption of the bronc, more frequent doctor visits (as opposed to the weekend), going home education, pharmacist, insulin staff and I am sure I forgot something else.
Saturday, July 28, 2007
More Progress
Today's blog will be shorter since Joy's day consisted of routine meds and in room testing and walking, much like what I reported yesterday. She walked fourteen laps today (4200 ft) in three sessions which is progress. One doctor indicated that she may have her final two chest cavity drainage tubes removed tonight or tomorrow. He said the rejection is still a major concern and next weeks biopsy will give them a clearer picture.
Plans for tomorrow will be the same, walk, sit up, walk, sit up and walk. One day soon, they may "show her the door". She can't wait, other than having to start physical rehab at the Pepsico Bldg in the Duke Center for Living Complex.
Still several concerns, but making progress.
Plans for tomorrow will be the same, walk, sit up, walk, sit up and walk. One day soon, they may "show her the door". She can't wait, other than having to start physical rehab at the Pepsico Bldg in the Duke Center for Living Complex.
Still several concerns, but making progress.
Friday, July 27, 2007
Stable With Some Progress
A day without a bronc was a relief. They introduced a new med ganciclovir which is a chemotherapy infused drug to aid in the prevention of disease in solid organ transplant recipients. It appears she is tolerating it at this time. Additional x-rays and normal in room PFT tests, breathing treatments and daily bloodletting rounded out that portion of the day.
We are doing more "going home training" and the daily walking assistance has now been assigned to me. That first day at home will be a severe adjustment so we need to learn all we can. Since early morning meds must be taken at 8:00AM, I am afraid her days of sleeping in are over forever. And, any thoughts about turning in early at night must wait until she takes another bowl of meds at 10:00PM. Naps will be at a premium since other meds must be taken at Noon and 6:00PM. These times may be subject to change but that is her lifelong future. She walked eleven laps today (3300 ft) in three separate walks. She still uses the heavy duty walker, O2 and requires some assistance. She walked with sneakers today and after thirty days without shoes, it took a couple laps to adjust to the feel.
So, the goal continues to walk more, wean from O2 and my assistance. This will come and she is making progress. They have removed some more tubes which makes it easier to get in / out of bed, walk, bathroom breaks and make her feel more comfortable. No update on the day they plan on performing another biopsy to check on the rejection. We are hoping for progress since this is a major rejection and therefore the aggressive meds.
We are doing more "going home training" and the daily walking assistance has now been assigned to me. That first day at home will be a severe adjustment so we need to learn all we can. Since early morning meds must be taken at 8:00AM, I am afraid her days of sleeping in are over forever. And, any thoughts about turning in early at night must wait until she takes another bowl of meds at 10:00PM. Naps will be at a premium since other meds must be taken at Noon and 6:00PM. These times may be subject to change but that is her lifelong future. She walked eleven laps today (3300 ft) in three separate walks. She still uses the heavy duty walker, O2 and requires some assistance. She walked with sneakers today and after thirty days without shoes, it took a couple laps to adjust to the feel.
So, the goal continues to walk more, wean from O2 and my assistance. This will come and she is making progress. They have removed some more tubes which makes it easier to get in / out of bed, walk, bathroom breaks and make her feel more comfortable. No update on the day they plan on performing another biopsy to check on the rejection. We are hoping for progress since this is a major rejection and therefore the aggressive meds.
Thursday, July 26, 2007
Rougher Day
Throughout the morning and early afternoon hours, Joy was vomiting and experienced severe diarrhea which made her feel pretty exhausted. But, she still had to swallow the typical days meds, more IV's and the ever frequent bronc. Those issues subsided later in the afternoon and she slept for two to three hours before they awakened her to start the final round of the new rejection infusion. Other than the aforementioned issues, her doctor is frankly surprised that she has tolerated this med as well as she has. Later in afternoon, she had chest and abdominal x-rays and additional tests to insure the diarrhea is not the result of a new infection. Another biopsy is planned for next week. She is resting on room air a lot but still requires O2 for exercise.
By late evening, she felt somewhat better and completed a four lap walk which is a record. Although she has done six laps total previously, this was the first time she completed this many laps during one walk. Encouraging.
I am not aware of the plan for tomorrow but hopefully she will feel well enough to walk even more.
By late evening, she felt somewhat better and completed a four lap walk which is a record. Although she has done six laps total previously, this was the first time she completed this many laps during one walk. Encouraging.
I am not aware of the plan for tomorrow but hopefully she will feel well enough to walk even more.
Thank you everyone!!!
I wanted to extend my sincerest gratitude to all of you. Your love, encouragement & support towards my parents and our family has and will continue to be greatly appreciated. Since I started going to mom's appointments at Duke over a year and a half ago, sharp turns and surprises were always par for the course. We never knew what to expect and we never knew what they would hand my mom next. Well, like dad said, we could never imagine anything like this. Through out this entire process what has remained the most consistent is her determination and my dad's unwavering love and support for her. They both have been an inspiration to their children. Even on the worst day's, we all have remained strong and resolved to keep moving forward on this journey with her. With that said I thank each one of you for joining us on this ride. At least with Joy, we all knew it would always be a colorful ride. We are all very grateful for everything that you all have done for her.
Love,
Caroline
Love,
Caroline
Wednesday, July 25, 2007
Rejection
As I mentioned yesterday, the new major issue is rejection and while this is always a reality, this one is more significant than the doctors had anticipated. This is the same rejection issue mentioned several days ago and was not specifically identified until the results of the recent biopsy was available.
Joy tolerated the pre-meds and then the rejection med which was administered by IV during the night. This med mandated that vitals were taken every 15 minutes for the six hour duration of the infusion. Not ideal for a restful nights sleep.
After a couple hours to recover from this, she walked three good laps and had to return to the chair and subsequently the bed to prepare for todays pre-meds and a four hour dose of the rejection med. The med as Joy puts it, comes from the Easter Bunny. Look on the internet for anti-thymocyte globulin rabbit and you will see why. Anyone want a dose of this knowing the potential side effects? Fortunately, Joy seems to be tolerating this at the present time and BP has remained stable with the support of dopimine.
We expect the same routine over the next three days and hope she can still continue some walking.
Joy tolerated the pre-meds and then the rejection med which was administered by IV during the night. This med mandated that vitals were taken every 15 minutes for the six hour duration of the infusion. Not ideal for a restful nights sleep.
After a couple hours to recover from this, she walked three good laps and had to return to the chair and subsequently the bed to prepare for todays pre-meds and a four hour dose of the rejection med. The med as Joy puts it, comes from the Easter Bunny. Look on the internet for anti-thymocyte globulin rabbit and you will see why. Anyone want a dose of this knowing the potential side effects? Fortunately, Joy seems to be tolerating this at the present time and BP has remained stable with the support of dopimine.
We expect the same routine over the next three days and hope she can still continue some walking.
Tuesday, July 24, 2007
Another Good Day, Well Sort Of
Joy had a restful night without incident and walked three laps in Acute Care before walking to her new room in the Step Down Unit. Once she settled in there, we went for a three lap walk for a total of six laps today (1800 feet) and she seemed to tolerate it quite well. She still requires O2 for walking. Her voice is getting closer to normal and she does not get out of breath talking like she used to. I am wondering how her now talking better benefits me? That was a joke! She was able to sleep another three hours this afternoon so hopefully she can begin catching up, little by little.
I was thinking on the way home tonight, how best I could caution you to not be overly optimistic about her progress without sounding negative or pesimistic. Well, here is the best way to explain what I am talking about when I say this thing can turn on a dime!
Joy called me about 9PM tonight to say the doctor that does her broncs each day came in and she was joking with him about having to do another, twice in the same day. He said he was there to talk about something very serious. The preliminary results from yesterdays biopsy came back and showed a "real funky" (his words) rejection that they would not have known about without the biopsy. Apparently quite rare. This he said, may explain why she has not progressed as well as anticipated, which has baffled the doctors recently. He said the med they need to give her have serious side effects and requires several other IV meds prior to taking the rejection medication to balance the effects. BP becoming unstable, dizzyness and nausea are just some of the side effects. She will begin taking these meds tonight.
I have received inquiries about flowers or plants for Joy and nothing has changed from my very early blog stating that lung transplant patients cannot tolerate these and may be the case for months and months to come. So Joy has asked me to write in this blog that anyone wishing to do something like that should purchase and donate some school supplies for a needy child. We sincerely continue to appreciate your cards, emails and blog updates and thank you so much for your interest in riding along with us.
So, I don't know right now if these meds will require the type of monitoring they do in Acute Care or if she can remain in Step Down. And, how much impact this will have on her progress / set back time is not know at this time. She is taking this like a champ and as with everything else, she does not complain and knows to expect infection and rejection at any time during the rest of her natural life.
Will keep you posted tomorrow night. Thanks for listening.
I was thinking on the way home tonight, how best I could caution you to not be overly optimistic about her progress without sounding negative or pesimistic. Well, here is the best way to explain what I am talking about when I say this thing can turn on a dime!
Joy called me about 9PM tonight to say the doctor that does her broncs each day came in and she was joking with him about having to do another, twice in the same day. He said he was there to talk about something very serious. The preliminary results from yesterdays biopsy came back and showed a "real funky" (his words) rejection that they would not have known about without the biopsy. Apparently quite rare. This he said, may explain why she has not progressed as well as anticipated, which has baffled the doctors recently. He said the med they need to give her have serious side effects and requires several other IV meds prior to taking the rejection medication to balance the effects. BP becoming unstable, dizzyness and nausea are just some of the side effects. She will begin taking these meds tonight.
I have received inquiries about flowers or plants for Joy and nothing has changed from my very early blog stating that lung transplant patients cannot tolerate these and may be the case for months and months to come. So Joy has asked me to write in this blog that anyone wishing to do something like that should purchase and donate some school supplies for a needy child. We sincerely continue to appreciate your cards, emails and blog updates and thank you so much for your interest in riding along with us.
So, I don't know right now if these meds will require the type of monitoring they do in Acute Care or if she can remain in Step Down. And, how much impact this will have on her progress / set back time is not know at this time. She is taking this like a champ and as with everything else, she does not complain and knows to expect infection and rejection at any time during the rest of her natural life.
Will keep you posted tomorrow night. Thanks for listening.
Monday, July 23, 2007
Another Good Day
Joy had a fairly restful night and after the morning ritual of tubes in, tubes out, x-rays, meds and blood for testing, she asked to go for a walk. Although we stayed in the Acute Care Unit, her distance was equivilent to one lap in the Step Down Unit. After sitting in a chair and before anticipating the surgical team to arrive for the biopsy, she walked a full lap which includes a couple hallways outside of the Acute Care Unit. She has found that constant coaching and talking helps to distract her so we are perfecting that together. And, and, and she did all of this with only a couple stops (standing, not sitting)and without the backup of someone pulling a chair behind her, just in case. Fantastic progress.
Several of the RN's have told her that anxiety has presented in 100% of the lung transplant patients they have cared for and Joy's progress is very typical and should not be compared to others progress or any other type of surgery including heart by-pass and heart transplant.
The biopsy, which is a more involved surgical procedure was completed today and the extracted fluid and tissue looked pretty good and the preliminary results may be available tomorrow afternoon. Pneunomia is still present but abaiting. If the biopsy shows rejection, they can treat that with additional meds.
She wanted me to thank each of you again for your cards, letters, e-mails, blog messages, prayers and whatever else. She really appreciates it.
Possibly, depending upon overnight stability and her continued mobility, she may be moved back to the Step Down Unit tomorrow. And, her goal is to be out of the hospital this weekend. She may just pull this off.
Several of the RN's have told her that anxiety has presented in 100% of the lung transplant patients they have cared for and Joy's progress is very typical and should not be compared to others progress or any other type of surgery including heart by-pass and heart transplant.
The biopsy, which is a more involved surgical procedure was completed today and the extracted fluid and tissue looked pretty good and the preliminary results may be available tomorrow afternoon. Pneunomia is still present but abaiting. If the biopsy shows rejection, they can treat that with additional meds.
She wanted me to thank each of you again for your cards, letters, e-mails, blog messages, prayers and whatever else. She really appreciates it.
Possibly, depending upon overnight stability and her continued mobility, she may be moved back to the Step Down Unit tomorrow. And, her goal is to be out of the hospital this weekend. She may just pull this off.
Sunday, July 22, 2007
A Better Day
Other than a few anxious moments in the middle of the night, Joy's numbers stabilized throughout the day and into the evening. More CT Scans, x-rays, bronc, meds, three units of blood, oxygen and otherwise resting was the course for the day. They removed the SWAN (wire type tube in her neck to her heart) but retained all of the IV's and blood gas line.
Her RN got her to sit up in bed, transfer to sit in a chair for awhile and then Joy walked about sixty feet. They did not press her to do more. Slow and easy. A definate restart and very positive morale booster for her. Anxiety issues seemed minimal. She slept for about four hours late today which may be a record, post surgery.
I got to spend a lot of time with her and presented all of the cards she has received. She is most appreciative of your support and thoughtfullness. As I have stated previously, this blog site and e-mails will not be available to her until she is released to come home, but I give her daily updates.
The Team's "focus" is leaning toward a "hidden" infection or rejection as evidenced by a "spot" of interest on one of her lungs. They will perform a biopsy of that spot tomorrow but the results are not expected for a couple days.
Her spirits have regenerated and hopefully she will continue to show improvement tomorrow. We want to get back on the three forward one step back routine. She has really hung in there under some tough circumstances.
Her RN got her to sit up in bed, transfer to sit in a chair for awhile and then Joy walked about sixty feet. They did not press her to do more. Slow and easy. A definate restart and very positive morale booster for her. Anxiety issues seemed minimal. She slept for about four hours late today which may be a record, post surgery.
I got to spend a lot of time with her and presented all of the cards she has received. She is most appreciative of your support and thoughtfullness. As I have stated previously, this blog site and e-mails will not be available to her until she is released to come home, but I give her daily updates.
The Team's "focus" is leaning toward a "hidden" infection or rejection as evidenced by a "spot" of interest on one of her lungs. They will perform a biopsy of that spot tomorrow but the results are not expected for a couple days.
Her spirits have regenerated and hopefully she will continue to show improvement tomorrow. We want to get back on the three forward one step back routine. She has really hung in there under some tough circumstances.
Saturday, July 21, 2007
A Day For Stabilization
The BP's diastolic dropping into the 40's, created sufficient concern to return her to the Acute Care Unit to better monitor and diagnose the dizzyness and short breath issue.
Once again, she has more tubes in her than an old radio including a painful wire type catheter inserted in her neck which leads to and monitors blood flow in her heart. Numerous blood tests, echo card, dopelar heart check and x-rays have not yet revealed anything of concern, at least that we are aware of. They want to rule out a heart attack and I am not aware whether that has been excluded or not.
Her plan for the day was merely to stabilize and diagnose. Overall, her numbers have somewhat stabilized with the addition of IV's and other meds. Her demeanor was good and engaged in conversation between drifting snoozes. She asked about cards that many of you have sent and I will take these to her tomorrow.
So, she is still critical (the reason she is in Acute Care) but stable and the plan for tomorrow will be to wean her off some of the meds that are assisting with her BP and see how that goes. Anxiety issues were minimal but we must keep in mind that she was not up walking or having any activity.
Once again, she has more tubes in her than an old radio including a painful wire type catheter inserted in her neck which leads to and monitors blood flow in her heart. Numerous blood tests, echo card, dopelar heart check and x-rays have not yet revealed anything of concern, at least that we are aware of. They want to rule out a heart attack and I am not aware whether that has been excluded or not.
Her plan for the day was merely to stabilize and diagnose. Overall, her numbers have somewhat stabilized with the addition of IV's and other meds. Her demeanor was good and engaged in conversation between drifting snoozes. She asked about cards that many of you have sent and I will take these to her tomorrow.
So, she is still critical (the reason she is in Acute Care) but stable and the plan for tomorrow will be to wean her off some of the meds that are assisting with her BP and see how that goes. Anxiety issues were minimal but we must keep in mind that she was not up walking or having any activity.
Another Major Setback
At 1am today, Joy's doctors felt that she needed better monitoring than they could not provide for her in the Step Down unit, and moved her back to Acute Care. They are in the process of "installing" a line in her neck to give better reads on her vitals and such. We will of course keep you posted as any news becomes available. Thank you all again for all your posts, kind words, thoughts and prayers.
Friday, July 20, 2007
Snag or Setback?
Overnight, O2 saturation, blood gas and BP dropped which led to additional blood tests, x-rays, bronc and periodic BiPap treatments. All of this prevented walking. During the night she awoke and couldn't get back to sleep and actually completed three laps. Then things changed.
Upon returning from x-ray around noon, before getting into bed, she decided to try going to the restroom by herself for the first time. She became lightheaded / dizzy and fell and hit her head on the floor the sound of which was heard three doors down at the nursing station. Extreme concerns resulted in additional blood tests, x-rays, CT Scans and close observations. Diastolic BP was in low 50's. The impact was just above the left eye and directly behind the eyebrow at the top of the skull eye socket. Swelling has appeared to subside but beginning to turn "black and blue".
If any of you have ever had a ABG test and I have not, everyone describes it as a painful process of sticking a long needed through the wrist directly into an artery. On a good day, Joy tolerates these but never looks forward to them. TODAY SHE HAD EIGHT WITH TWO MORE PLANNED BY SUNRISE.
Her finger tips are all "black and blue" and bruised from the numerous blood sticks to test for blood sugar. Her hands, neck and arms will take months to heal and return to normal color.
She has been through a lot. A long day and we hope for a better one tomorrow. Ironically, the anxiety appeared to have improved today and then these setbacks. I feel so much for her.
Upon returning from x-ray around noon, before getting into bed, she decided to try going to the restroom by herself for the first time. She became lightheaded / dizzy and fell and hit her head on the floor the sound of which was heard three doors down at the nursing station. Extreme concerns resulted in additional blood tests, x-rays, CT Scans and close observations. Diastolic BP was in low 50's. The impact was just above the left eye and directly behind the eyebrow at the top of the skull eye socket. Swelling has appeared to subside but beginning to turn "black and blue".
If any of you have ever had a ABG test and I have not, everyone describes it as a painful process of sticking a long needed through the wrist directly into an artery. On a good day, Joy tolerates these but never looks forward to them. TODAY SHE HAD EIGHT WITH TWO MORE PLANNED BY SUNRISE.
Her finger tips are all "black and blue" and bruised from the numerous blood sticks to test for blood sugar. Her hands, neck and arms will take months to heal and return to normal color.
She has been through a lot. A long day and we hope for a better one tomorrow. Ironically, the anxiety appeared to have improved today and then these setbacks. I feel so much for her.
Thursday, July 19, 2007
A Better Day
Since she was unable to get to sleep, Joy asked to walk in the middle of the night and that lap plus one additional in early morning and a two lap jaunt in mid afternoon gave her four for the day and she planned on one or two more later tonight. Anxiety issues diminished somewhat which contributed to the added mobility. All of this with 1 lpm O2.
She is on room air all the time except walking. Majority of meds have been converted to oral administration except insulin and feeding tube. Occasional IV, but very limited. We met with the pharmacist today to review discharge meds and procedures. About 21 meds and 39 pills plus insulin, stomach feed tube nourishment and a nebulizer required anti-infection inhaler. Her coughing improved today and therefore, no bronc!!!!! Pain creeping up a little but still in manageable range. Med adjustments may have helped the anxiety issues. Incision area infection still a concern and watched closely. She has lost 8 lbs........don't remember if I mentioned that earlier.
She seemed overall more encouraged today than yesterday and pleased with her recent progress.
Still not interested in TV, newspapers, cards, etc. but that will come. Thanks for all of your cards and messages. Be patient, she will eventually be able to get to them.
So again, walk and walk and walk is the plan and she is trying.
She is on room air all the time except walking. Majority of meds have been converted to oral administration except insulin and feeding tube. Occasional IV, but very limited. We met with the pharmacist today to review discharge meds and procedures. About 21 meds and 39 pills plus insulin, stomach feed tube nourishment and a nebulizer required anti-infection inhaler. Her coughing improved today and therefore, no bronc!!!!! Pain creeping up a little but still in manageable range. Med adjustments may have helped the anxiety issues. Incision area infection still a concern and watched closely. She has lost 8 lbs........don't remember if I mentioned that earlier.
She seemed overall more encouraged today than yesterday and pleased with her recent progress.
Still not interested in TV, newspapers, cards, etc. but that will come. Thanks for all of your cards and messages. Be patient, she will eventually be able to get to them.
So again, walk and walk and walk is the plan and she is trying.
Wednesday, July 18, 2007
Limited Progress
After the usual bronc, meds and chest x-ray, Kevin and I along with the PT and the walker, Joy finally walked 2 laps with only one stop at 11 AM. 600 feet. Only 4680 feet to go and without any assistance in one day.
They gave her a couple meds today in tablet form and allowed her to swallow with sips of water. This is one of the preliminary steps to prepare for discharge. She was on room air most of the day other than the two lap walk. Blood sugar bounced high at over 225 with target of 100.
She has developed a sizable infection in the incision area and they have begun treatments accordingly. We will meet with pharmacist tomorrow morning to begin education and practice for me to begin giving her meds, insulin shots, testing blood sugar levels, spirometer procedure and documentation of results, feeding tube cleaning and feeding, incision monitoring, etc., etc. All of the stuff an RN is doing now!
So, a couple people talk about discharge in a few days but I am not hearing it from the primary physician. He is steadfast in a documented one mile in a day walk prior to discharge. Thank God for that. The anxiety and panic levels are new to me and right now, in some respects, she is getting behind due to the limited mobility issue. Breathing is acceptable but not up to acceptable standards at this time.
Meds and dosing schedule changed a little so will see what tomorrow brings.
They gave her a couple meds today in tablet form and allowed her to swallow with sips of water. This is one of the preliminary steps to prepare for discharge. She was on room air most of the day other than the two lap walk. Blood sugar bounced high at over 225 with target of 100.
She has developed a sizable infection in the incision area and they have begun treatments accordingly. We will meet with pharmacist tomorrow morning to begin education and practice for me to begin giving her meds, insulin shots, testing blood sugar levels, spirometer procedure and documentation of results, feeding tube cleaning and feeding, incision monitoring, etc., etc. All of the stuff an RN is doing now!
So, a couple people talk about discharge in a few days but I am not hearing it from the primary physician. He is steadfast in a documented one mile in a day walk prior to discharge. Thank God for that. The anxiety and panic levels are new to me and right now, in some respects, she is getting behind due to the limited mobility issue. Breathing is acceptable but not up to acceptable standards at this time.
Meds and dosing schedule changed a little so will see what tomorrow brings.
Tuesday, July 17, 2007
One Fast Lap
Kevin arrived to see Joy taking one of three rest stops in her one lap trek and saw first hand a little of the anxiety issues that Joy has experienced. Later, more x-rays, the ever popular bronc, meds, spending more time sitting in the chair and consultations. Some anxiety / panic issues remain but showing improvement. Pneumonia and rejection issues showing some slow improvement as evidenced by the bronc and x-rays.
Although strongly encouraged by her primary surgeon, she sat in the chair WITHOUT O2 twice for almost two hours. Yes, room air only !
After developing a game plan with Kevin and me holding/supporting Joy at each side of her walker and the nurse following close behind with backup chair and only 2 lpm of O2, we ventured into the hallway for another walk. She didn't really need our physical support but I think she felt it was there and mentally she felt safer.
Now, the "BREAKING NEWS" and developing story.
She completed one fast lap and WITHOUT a stop! I have not seen her that excited in a long time! She came back to the room, stayed on 2 lpm O2 for a few moments and then went on room air for another hour plus. A real confidence builder.
We might be onto something here! Now the tough love says that we "gotta" do this about 3 separate times tomorrow or a couple laps at a time. But this is another big step. Kevin and I will try the same thing tomorrow morning before he returns to Houston and hope the plan continues to work.
Although strongly encouraged by her primary surgeon, she sat in the chair WITHOUT O2 twice for almost two hours. Yes, room air only !
After developing a game plan with Kevin and me holding/supporting Joy at each side of her walker and the nurse following close behind with backup chair and only 2 lpm of O2, we ventured into the hallway for another walk. She didn't really need our physical support but I think she felt it was there and mentally she felt safer.
Now, the "BREAKING NEWS" and developing story.
She completed one fast lap and WITHOUT a stop! I have not seen her that excited in a long time! She came back to the room, stayed on 2 lpm O2 for a few moments and then went on room air for another hour plus. A real confidence builder.
We might be onto something here! Now the tough love says that we "gotta" do this about 3 separate times tomorrow or a couple laps at a time. But this is another big step. Kevin and I will try the same thing tomorrow morning before he returns to Houston and hope the plan continues to work.
Monday, July 16, 2007
First, I have to say thank you to everyone for all their prayers, good thoughts and well wishes. Keep the comments coming. Although my mom is not near a computer at this time, please be rest assured that we make her aware of all of them that gets posted on her blog. I know she is going to be amazed on just how many there are when she gets a chance to sit down and go through all of them for herself. She will be so deeply moved by all your most gracious and heart warming messages, just as her family is daily. I can't wait to see her get through turns three and four, on to the finish line and into winners circle. We all know Joy is a fighter, and the strongest women I know. My mom told me she was not going to quite, nor ever give up, so YOU GO MOM!!!! I have to agree with Sharon, Dad you sounded awesome tonight. Not sure if a gentle reminder to mom that Duke basketball season is around the corner would be of any help, but it is worth a shot :-). Thank you again everyone, we just could not do this with out all of your love and support. Catherine "Cat"
A Major Step
Using my love for auto racing for an analogy, Joy rounded turn one when she left Acute Care and may have finally rounded turn two today, but the long backstretch is coming and she must now build momentum to be ready for three, four and the finish line. The caution flag is out but ready to go back to green.
After a frank discussion (no, make that extremely frank and candid) with her primary physician and several members of the Transplant Team, they decided to give her some meds to help with the anxiety and reduce the prednisone significantly. Her part in this is to dig deep within and fight as hard as she can otherwise, the consequences are bleak, so read between the lines. I think the new meds helped more than the discussion but combined, it may have worked!
After receiving the new meds, she was able to walk a full 300 ft lap with only two rest stops and duplicated that in late afternoon. She also sat in a chair for a few hours, was wheel chaired to x-ray, walked into her bathroom with limited assistance and survived another bronc. They re-introduced the BiPap machine for a couple hours and nights to help her breathing and purge an increasing amount of carbon dioxide build up in her lungs. Again, mobility is key. All of this with minimal anxiety.
All in all, we think she had a fantastic day and though many concerns remain, she had to get to this step with the anxiety issue first. Period.
I cannot wait until tomorrow.
After a frank discussion (no, make that extremely frank and candid) with her primary physician and several members of the Transplant Team, they decided to give her some meds to help with the anxiety and reduce the prednisone significantly. Her part in this is to dig deep within and fight as hard as she can otherwise, the consequences are bleak, so read between the lines. I think the new meds helped more than the discussion but combined, it may have worked!
After receiving the new meds, she was able to walk a full 300 ft lap with only two rest stops and duplicated that in late afternoon. She also sat in a chair for a few hours, was wheel chaired to x-ray, walked into her bathroom with limited assistance and survived another bronc. They re-introduced the BiPap machine for a couple hours and nights to help her breathing and purge an increasing amount of carbon dioxide build up in her lungs. Again, mobility is key. All of this with minimal anxiety.
All in all, we think she had a fantastic day and though many concerns remain, she had to get to this step with the anxiety issue first. Period.
I cannot wait until tomorrow.
Another Difficult Day
All but two drainage tubes were removed on Sunday and vitals remained quite stable. Walking was limited to about a quarter of a lap.
Panic and anxiety attacks are absolutely hindering her mobility even to the extent of moving from the bed to a chair. She feels like she is going to drown and die. Extremely out of self control getting up or standing. Unfortunately, the class of meds that control this slow down the breathing which is not what they want with new lungs. The RN's, Resident and PT's have documented her records accordingly and are advocates on Joy's behalf. Coaching, counseling and breathing excercises have not helped. Situations like this are somewhat common in lung transplant patients so they just need to find a way to help Joy.
I am going over early this morning (Monday) in hopes of catching a moment with her lead physician to plead her case.
Overall physically she is progressing but she will never leave that hospital until the anxiety / panic attacks cease and allow her mobility. Very tough experience.
Panic and anxiety attacks are absolutely hindering her mobility even to the extent of moving from the bed to a chair. She feels like she is going to drown and die. Extremely out of self control getting up or standing. Unfortunately, the class of meds that control this slow down the breathing which is not what they want with new lungs. The RN's, Resident and PT's have documented her records accordingly and are advocates on Joy's behalf. Coaching, counseling and breathing excercises have not helped. Situations like this are somewhat common in lung transplant patients so they just need to find a way to help Joy.
I am going over early this morning (Monday) in hopes of catching a moment with her lead physician to plead her case.
Overall physically she is progressing but she will never leave that hospital until the anxiety / panic attacks cease and allow her mobility. Very tough experience.
Saturday, July 14, 2007
Mixed Bag of Ups and Downs
The first few hours of the days activity was limited due to excessive shortness of breath and exhaustion. They planned to take her to radiology for another x-ray but instead they did it in her room. She got that under control about noon and walked one lap with 3 long sit down breaks. The one lap is her record so far (1/18 of a mile) with 20 laps as the target but that won't be anytime soon. The doctor wanted her sitting in the chair after the walk but she insisted upon the bed where she remained. She was to exhausted to be taken down to x-ray so I guess they will try that again tomorrow. Numbers were pretty stable and bronc revealed progress with the rejection and infection issues.
The anxiety issues are greatly inhibiting her progress and since this may be chemically induced I do not think she has that much control over it. Insulin levels have been up and down but remain well above target.
Long tough day. Maybe tomorrow.....................?
The anxiety issues are greatly inhibiting her progress and since this may be chemically induced I do not think she has that much control over it. Insulin levels have been up and down but remain well above target.
Long tough day. Maybe tomorrow.....................?
Friday, July 13, 2007
A Rough Start But Overall Slight Improvement
By the time I arrived at 9AM, Joy had been transported to and from radiology for a daily chest x-ray and was seated in her chair and remained there for several hours, which is better for her than the bed. However, she was absolutely the most wiped out that she has been for months. Her numbers were dropping rather low and blood sugar continued higher than desired.
Finally, in mid-afternoon, her numbers improved and stabilized and actually pretty good. About 5PM, she forced herself to take a walk. It takes the nurse about 35 minutes to unhook / re hook all of the tubes, IVs, monitors and get her moved from the bed to the walker. I walked behind her with the "emergency" chair which she used once in a 90 foot walk. Shorter than ideal but a big step for her especially since her numbers did not crash as they have in the past. I was especially proud of her accomplishment because it would not have surprised me if they suggested moving her back to Acute Care. She is getting great care in the Step Down and it is considerably more quite than the AC environment.
Her bronc Dr. told her that although she came through surgery fantastic, he knows that it has been a tough road and acknowledged that the Team was more concerned about her than we knew. He reminded her that she is not 18 and this will take more time. Joy's doctor prior to transferring her to the Transplant Team dropped in again which really lifts her spirits. He said he may leave Fellow teaching and move to the Transplant Team and was using Joy as his source of inspiration.
So this is what I have been talking about. It can go to looking good to a reversal in minutes. The plan again is to walk, rest, walk, rest and I expect her to do about two 300 foot laps tomorrow assuming she has a good night and certainly a much better morning than today. The ultimate goal is 20 laps in a day.
She is talking a little more but still weak in volume. It may take some time but for now, this is so traumatic and difficult she questions her decision.
Finally, in mid-afternoon, her numbers improved and stabilized and actually pretty good. About 5PM, she forced herself to take a walk. It takes the nurse about 35 minutes to unhook / re hook all of the tubes, IVs, monitors and get her moved from the bed to the walker. I walked behind her with the "emergency" chair which she used once in a 90 foot walk. Shorter than ideal but a big step for her especially since her numbers did not crash as they have in the past. I was especially proud of her accomplishment because it would not have surprised me if they suggested moving her back to Acute Care. She is getting great care in the Step Down and it is considerably more quite than the AC environment.
Her bronc Dr. told her that although she came through surgery fantastic, he knows that it has been a tough road and acknowledged that the Team was more concerned about her than we knew. He reminded her that she is not 18 and this will take more time. Joy's doctor prior to transferring her to the Transplant Team dropped in again which really lifts her spirits. He said he may leave Fellow teaching and move to the Transplant Team and was using Joy as his source of inspiration.
So this is what I have been talking about. It can go to looking good to a reversal in minutes. The plan again is to walk, rest, walk, rest and I expect her to do about two 300 foot laps tomorrow assuming she has a good night and certainly a much better morning than today. The ultimate goal is 20 laps in a day.
She is talking a little more but still weak in volume. It may take some time but for now, this is so traumatic and difficult she questions her decision.
Thursday, July 12, 2007
Three Steps Forward, One Step Back
The title for this post is a quote from one of her doctors describing her progress today. Previously he described it as three steps back and one step forward. He said he was extremely concerned early on.
She walked twice although not the desired distance, but she is trying. She had another x-ray and today's bronc showed improvement over yesterdays (rejection issue). "Sugar" level which is checked every three hours dropped from a high of 507 to 170 (goal 100) today and it appears the insulin injections she receives after these blood tests are helping. Again, this issue is med induced. Another IV line was pulled and moderate pain is being addressed.
By late morning, she was told that they planned to remove two of the drainage tubes from her and move her to Step Down. And at 4:25PM today, she was moved to her new room. Still a vast maze of tubes and monitors hooked up but this step was significant and has breathed a little fresh air into those new lungs! Now, the work begins and she knows it. Walk, rest, walk, rest........you get the picture.
The kids have been here a lot and have begun to get back to their responsibilities at home. Crystal is local and back to work after taking off a week so she can easily drop in. Kevin returned to Houston for a few days and came back for overnight visit this week. Caroline went home after a week, tended to the kids and came back for a few days this weekend. She returned home today to get the kids ready for their new school year next week................Caroline can't possibly miss Chloe's first day in Kindergarten and Kierra's birthday. Happy Birthday Kierra! Jim drove up from his station in Florida early in the process to see Joy and has since returned. Cathy was also here over a week and returned home a couple days ago along with Kayce. Cathy is back to work and Kayce gets to sleep in her own bed.........and sleep in and not sit in a hospital waiting room all day. Each of us have bought something like books, magazines, neck pillows, creams and comfort items none of which has peaked much interest however, she turned on the TV tonight and that is a first since transplant. Just another sign of better things to come.
While all of these things are encouraging, we anticipate set backs and we have talked about that but feel we have a realistic approach to the realization that it "ain't over yet". But we will take these positive steps and move forward.
Now, I am going to bed. Good night.
She walked twice although not the desired distance, but she is trying. She had another x-ray and today's bronc showed improvement over yesterdays (rejection issue). "Sugar" level which is checked every three hours dropped from a high of 507 to 170 (goal 100) today and it appears the insulin injections she receives after these blood tests are helping. Again, this issue is med induced. Another IV line was pulled and moderate pain is being addressed.
By late morning, she was told that they planned to remove two of the drainage tubes from her and move her to Step Down. And at 4:25PM today, she was moved to her new room. Still a vast maze of tubes and monitors hooked up but this step was significant and has breathed a little fresh air into those new lungs! Now, the work begins and she knows it. Walk, rest, walk, rest........you get the picture.
The kids have been here a lot and have begun to get back to their responsibilities at home. Crystal is local and back to work after taking off a week so she can easily drop in. Kevin returned to Houston for a few days and came back for overnight visit this week. Caroline went home after a week, tended to the kids and came back for a few days this weekend. She returned home today to get the kids ready for their new school year next week................Caroline can't possibly miss Chloe's first day in Kindergarten and Kierra's birthday. Happy Birthday Kierra! Jim drove up from his station in Florida early in the process to see Joy and has since returned. Cathy was also here over a week and returned home a couple days ago along with Kayce. Cathy is back to work and Kayce gets to sleep in her own bed.........and sleep in and not sit in a hospital waiting room all day. Each of us have bought something like books, magazines, neck pillows, creams and comfort items none of which has peaked much interest however, she turned on the TV tonight and that is a first since transplant. Just another sign of better things to come.
While all of these things are encouraging, we anticipate set backs and we have talked about that but feel we have a realistic approach to the realization that it "ain't over yet". But we will take these positive steps and move forward.
Now, I am going to bed. Good night.
Wednesday, July 11, 2007
More Plus than Minus
My 6AM call indicated she had a fair night and numbers were stable.
When I arrived today, they had another blood gas study planned, another bronc and depending upon the results, removing the vent. Needless to say, Joy couldn't wait! Just before noon, the tube was removed and her voice was amazingly better than previously. The plan then was to let her rest a little, sit in a chair and walk. Right now, the toughest thing she has to do is walk and the one thing that will help her the most is walk. We learned that the "something" they noticed in the previous biopsy was rejection and they have started three antibiotics to try to counter. A stress management specialist visited her twice today and trying to assist her with bouts of anxiety and stress. He O2 was reduced to 2 lpm which is an improvement. So by noon everything looked on the upswing and then she had pain management issues throughout the early afternoon. Around 6PM they walked her a full lap in and out of Acute Care and she appeared to tolerate this better than any previous walk that I am aware of. We may have spent a few more minutes with her today but again, her room is adequate for the care but small for visitors and naturally no seating. Kevin bought her a couple magazines that she would typically like, but she deferred reading at this time. Her memory remains normal, her thought process about 99% (still on a lot of meds) but still naturally weak. They have increased the insulin injections to fight the increasing sugar levels brought on by the meds and we do not know how long this will last. She still has all nine drainage tubes in place a couple of which in her back may be the culprit for the pain issues.
So all in all, we are optimistic but how she manages the night and what she is like in the morning should tell a lot. The plan is to have her walk at least three or four laps around the same course as mentioned above.
Now, Joy's niece Dr. Laraine Bortner, asked me to tell you how I am doing. Wayne is doing fine. Tiring days? Sure, but I feel that I am managing the time away from Joy and DUMC by getting good rest and sleep, taking a coffee break here and there and do not feel guilty for not being there all night. And, I have added comfort in that Joy does not expect that. She continues to get great care and if needed, I could be there is 25 minutes. Writing the blog at night seems rather therapeutic as I recap the day and document Joy's status and progress. This blog also serves as a diary of facts, feelings and a days observation that Joy may find of interest when she comes home. I know we have many relatives, friends, friends of friends interested in Joy and I look forward to the nightly Post and reading the various comments. I could not possibly manage phone calls and e-mails without the benefits of the blog and I have received so many notes of appreciation for providing current updates. Joy and I bought into this ordeal as a team and I have nothing to complain about most especially when compared to what she is going through. Honest, I cannot envision any circumstance where I would consider this surgery. I remain so proud of her and applaud her effort to extend her life and know what a sacrifice and price she is paying for that time.
Now, let's hope and pray for continued improvement tomorrow. The road will still be long and progress in mini steps and set backs, but we have no schedule or timetable and do not expect things to go perfect.
Good night and God bless.
When I arrived today, they had another blood gas study planned, another bronc and depending upon the results, removing the vent. Needless to say, Joy couldn't wait! Just before noon, the tube was removed and her voice was amazingly better than previously. The plan then was to let her rest a little, sit in a chair and walk. Right now, the toughest thing she has to do is walk and the one thing that will help her the most is walk. We learned that the "something" they noticed in the previous biopsy was rejection and they have started three antibiotics to try to counter. A stress management specialist visited her twice today and trying to assist her with bouts of anxiety and stress. He O2 was reduced to 2 lpm which is an improvement. So by noon everything looked on the upswing and then she had pain management issues throughout the early afternoon. Around 6PM they walked her a full lap in and out of Acute Care and she appeared to tolerate this better than any previous walk that I am aware of. We may have spent a few more minutes with her today but again, her room is adequate for the care but small for visitors and naturally no seating. Kevin bought her a couple magazines that she would typically like, but she deferred reading at this time. Her memory remains normal, her thought process about 99% (still on a lot of meds) but still naturally weak. They have increased the insulin injections to fight the increasing sugar levels brought on by the meds and we do not know how long this will last. She still has all nine drainage tubes in place a couple of which in her back may be the culprit for the pain issues.
So all in all, we are optimistic but how she manages the night and what she is like in the morning should tell a lot. The plan is to have her walk at least three or four laps around the same course as mentioned above.
Now, Joy's niece Dr. Laraine Bortner, asked me to tell you how I am doing. Wayne is doing fine. Tiring days? Sure, but I feel that I am managing the time away from Joy and DUMC by getting good rest and sleep, taking a coffee break here and there and do not feel guilty for not being there all night. And, I have added comfort in that Joy does not expect that. She continues to get great care and if needed, I could be there is 25 minutes. Writing the blog at night seems rather therapeutic as I recap the day and document Joy's status and progress. This blog also serves as a diary of facts, feelings and a days observation that Joy may find of interest when she comes home. I know we have many relatives, friends, friends of friends interested in Joy and I look forward to the nightly Post and reading the various comments. I could not possibly manage phone calls and e-mails without the benefits of the blog and I have received so many notes of appreciation for providing current updates. Joy and I bought into this ordeal as a team and I have nothing to complain about most especially when compared to what she is going through. Honest, I cannot envision any circumstance where I would consider this surgery. I remain so proud of her and applaud her effort to extend her life and know what a sacrifice and price she is paying for that time.
Now, let's hope and pray for continued improvement tomorrow. The road will still be long and progress in mini steps and set backs, but we have no schedule or timetable and do not expect things to go perfect.
Good night and God bless.
Tuesday, July 10, 2007
Somewhat Stable
Essentially, today was similar to yesterday in that she remained on the vent, sedated and rarely awake. She did not have the trach installed and I do not know the goal for that. BP was jumping all over up and down and they gave her two units of blood in the night. During one of my visits when Joy was awake, she was extremely mad and upset over the vent and started to remove the bandage and pull on a line that is in one side of her neck. They later re-installed a line in the other side of her neck (ouch!) and after an x-ray to determine that it was properly placed, they removed the line from the other side. It looked like a metal wire about a foot long.
I do not have word on the biopsy or today's chest x-ray. I asked her if she remembered Dr. Hollingsworth (see yesterdays blog update) and her face lit up with pleasure. I knew that would help.
Naturally she would like more progress and feel better, but the setback is not of her doing and I can tell she is fighting through it. Memory is good. I am still so proud of her. I know that new lungs are not in my future!
I do not have word on the biopsy or today's chest x-ray. I asked her if she remembered Dr. Hollingsworth (see yesterdays blog update) and her face lit up with pleasure. I knew that would help.
Naturally she would like more progress and feel better, but the setback is not of her doing and I can tell she is fighting through it. Memory is good. I am still so proud of her. I know that new lungs are not in my future!
Monday, July 9, 2007
A Long, Long Road Ahead
After taking Cathy and Kayce to the airport for their return to Chicago, I first saw Joy for a few moments about 9:30AM. She was placed back on the Bipap machine after significant drops in her O2 (55% on 12 lpm) and BP during a brief attempt to walk. Since she was on a full face mask and slightly sedated, she was unable to speak. One of our "nurse buddies" from the Step Down Unit was providing back up the Acute Care and was assigned to Joy along with another good male nurse. So we are back to two on one. Cheryl (RN) told me the chest X-ray taken this morning showed improvement from yesterdays (pneumonia) and the immediate plan was to allow her to rest.
About noontime, I was advised they planned to do a biopsy bronc later in the afternoon and they must reinstall the ventilator since this type bronc required some sedative. I was then informed that they may decide to do a Tracheotomy later today or maybe tomorrow and then remove the ventilator. The "trach" should make her more comfortable and make it much easier for her to breath. She continues to labor hard to breathe. Joy does not yet know about the "trach" ! And, I can tell she does not like the vent! She also doesn't like arms restrained but who can blame her? But.........................as the doctor told her, she must have the vent or stop breathing.
Both RN's said the biopsies showed something but what I do not know and they will await initial lab results expected in about twenty-four hours. They are having a difficult time balancing her sedation and keeping her BP and respiration in line. BP goes very low and respiration goes up to 45 sometimes with a goal of 20.
Her care is fantastic. Two of the Social Workers that we know came by primarily to check on me first and then Joy. This was thoughtful but part of their job. Neither could talk to Joy but waived at the doorway so I don't know if Joy acknowledged that or not. She probably didn't care either way.
Dr. John Hollingsworth, her Pulmonologist that she has seen for the last year or so, has been in Europe and returned yesterday, knew Joy had her surgery and came by as an unofficial courtesy visit. He has now moved to a teaching position. She really likes and respects him so I think her eyes lit up a little when he saw her for a few moments. He told me essentially what the Resident physician indicated earlier about the need for the "trach" and how it would help them help her more efficiently and lessen the chances for bronchial infection and irritation. He said "all" other basics are sound including her kidneys which usually take a big hit with all the new meds and surgery trauma. As far as compromised lungs, he didn't know but felt that they could work around that but it would be a slow, slow process and encouraged me to not get hopes up for a quick and speedy turnaround. We have not.
Overall, we only saw her for a few moments today and unable to converse. So I do not expect to see any change in Joy over next 24-36 hours. The plan is for no activity and allow those new lungs to rest. For whatever reason, they are not able to carry the load and working extremely hard.
I can only imagine what is going through her mind.
About noontime, I was advised they planned to do a biopsy bronc later in the afternoon and they must reinstall the ventilator since this type bronc required some sedative. I was then informed that they may decide to do a Tracheotomy later today or maybe tomorrow and then remove the ventilator. The "trach" should make her more comfortable and make it much easier for her to breath. She continues to labor hard to breathe. Joy does not yet know about the "trach" ! And, I can tell she does not like the vent! She also doesn't like arms restrained but who can blame her? But.........................as the doctor told her, she must have the vent or stop breathing.
Both RN's said the biopsies showed something but what I do not know and they will await initial lab results expected in about twenty-four hours. They are having a difficult time balancing her sedation and keeping her BP and respiration in line. BP goes very low and respiration goes up to 45 sometimes with a goal of 20.
Her care is fantastic. Two of the Social Workers that we know came by primarily to check on me first and then Joy. This was thoughtful but part of their job. Neither could talk to Joy but waived at the doorway so I don't know if Joy acknowledged that or not. She probably didn't care either way.
Dr. John Hollingsworth, her Pulmonologist that she has seen for the last year or so, has been in Europe and returned yesterday, knew Joy had her surgery and came by as an unofficial courtesy visit. He has now moved to a teaching position. She really likes and respects him so I think her eyes lit up a little when he saw her for a few moments. He told me essentially what the Resident physician indicated earlier about the need for the "trach" and how it would help them help her more efficiently and lessen the chances for bronchial infection and irritation. He said "all" other basics are sound including her kidneys which usually take a big hit with all the new meds and surgery trauma. As far as compromised lungs, he didn't know but felt that they could work around that but it would be a slow, slow process and encouraged me to not get hopes up for a quick and speedy turnaround. We have not.
Overall, we only saw her for a few moments today and unable to converse. So I do not expect to see any change in Joy over next 24-36 hours. The plan is for no activity and allow those new lungs to rest. For whatever reason, they are not able to carry the load and working extremely hard.
I can only imagine what is going through her mind.
Sunday, July 8, 2007
Day Seven
Joy had another restless night with little sleep but tolerated the Bipap machine so that was good. She had another routine "bronc" which revealed the onset of pneumonia but to what extent, we do not know at this time. Antibiotics were added immediately. Her morning walk was relatively brief and her "numbers" fell drastically, so she quickly returned to her bed. Her nurse and PT specialist decided to hook her up to dual monitors for the afternoon walk to ensure accurate reads. If they knew the numbers were absolutely accurate, they would "push" her a little more than otherwise.
Joy said she overheard her surgeon talking with residents in the hallway about her new lungs and indicated they may have come from a young male adult that fell and was trapped in a crevice for an extended period of time. The doctor indicated that these lungs were more compromised than ideal (fluid, I believe) and may be hampering her recovery. Again, this info was overheard and not directly told to Joy which is doubtful that it ever will be. Joy can choose to use the compromised lung theory to justify slower progress or she can decide to fight even harder. Right now, she is not happy about life so her fight needs to continue to surface if she wants to get through this. My guess is that she will but, this is really a struggle. I know a lung transplant will not be in my future.
The epidural was removed this morning and pain is now controlled manually through injections. Her afternoon walk was more optimistic than the morning and "numbers" were maintained favorably. Even the oxygen level reached a 100% a couple times although this was on 12 lpm at 55%. But, it is a start. She walked about a 100 feet total with one rest stop. The short term goal is about 300-500 feet two or three times a day. Ultimate discharge from the hospital will require a combined total walk distance of one mile. A challenge. The RN and PT were really good walk coaches, which helped. I was allowed to follow immediately behind with her chair, just in case. So, we spent a little more than average time with her today.
Overall, a cautiously optimistic day and we recognize this as a very slow and methodical process with back steps more frequent than forward steps which should reverse over time. The pain injections allowed her to sleep more which is good.
She is not interested in much news or anything else so your messages will be forwarded to her in due time.
Joy said she overheard her surgeon talking with residents in the hallway about her new lungs and indicated they may have come from a young male adult that fell and was trapped in a crevice for an extended period of time. The doctor indicated that these lungs were more compromised than ideal (fluid, I believe) and may be hampering her recovery. Again, this info was overheard and not directly told to Joy which is doubtful that it ever will be. Joy can choose to use the compromised lung theory to justify slower progress or she can decide to fight even harder. Right now, she is not happy about life so her fight needs to continue to surface if she wants to get through this. My guess is that she will but, this is really a struggle. I know a lung transplant will not be in my future.
The epidural was removed this morning and pain is now controlled manually through injections. Her afternoon walk was more optimistic than the morning and "numbers" were maintained favorably. Even the oxygen level reached a 100% a couple times although this was on 12 lpm at 55%. But, it is a start. She walked about a 100 feet total with one rest stop. The short term goal is about 300-500 feet two or three times a day. Ultimate discharge from the hospital will require a combined total walk distance of one mile. A challenge. The RN and PT were really good walk coaches, which helped. I was allowed to follow immediately behind with her chair, just in case. So, we spent a little more than average time with her today.
Overall, a cautiously optimistic day and we recognize this as a very slow and methodical process with back steps more frequent than forward steps which should reverse over time. The pain injections allowed her to sleep more which is good.
She is not interested in much news or anything else so your messages will be forwarded to her in due time.
Saturday, July 7, 2007
Some Stability, Limited Progress
Our time with Joy was limited to about fifteen minutes total today due in part to an emergency incident in the room beside her. More about that later.
Joy walked only once today and it was cut rather short due to being lightheaded and the peak of activity for the above mentioned incident. She received some additional pain medication after that walk along with an increase in oxygen to 6 lpm which is the most she has ever received (to the best of my memory) since she began supplemental O2 over a year ago. Her breathing is somewhat irregular at times but I do not know what that means at this time. During our brief time with her, she often asks that we talk and she will listen. Her speech is OK but her sentences are rather short staccato like and usually cut short to catch her breath. I talked with the social worker who is on the Transplant Team today along with two nurse "buddies" that we know and each of them provided me with essentially the same story......................."her progress is about what they generally see and nothing jumps out right now to cause grave concerns". Concerns? Yes, but not necessarily real serious at this time.
Without going back in my earlier updates, I believe I mentioned new friends that we met through the various support groups and Claude is the patient and his wife is Helen. Joy knows Claude a little better than his wife and I know his wife better than Joy. He had the same diagnosis (IPF) as Joy and both were given the same prognosis, about a year to live. Claude has had three previous dry runs and just a few hours after returning home from the last dry run, he was called back Friday afternoon. I shared in their excitement by meeting them in the Admission area and later talked with them while they were in a room waiting to hear if it was a go or another dry run. Finally after several hours, Helen told me it was a "go" and I visited with them again. He was still excited and very optimistic. Before leaving last evening while Claude was in surgery, I visited with Helen and reminded her how smooth Joy's surgery went, how long it took etc. and she too, remained positive but filled with anxiety as you would expect. I could not wait to see her this morning to hear the good news! I met Helen only to hear the words "Wayne, they do not expect Claude to survive the morning". His surgery was about fifteen hours and required fifty (yes 50) units of blood. Apparently he had a bacteria in his body that could not be detected which was the root cause of the bleeding but exacerbated due to extra work the surgeons had to do to the chest cavity. Once the new lungs were transplanted he was moved to Acute Care in the room next to Joy. These rooms are small but about twelve people worked on him constantly including performing additional surgery in that very room.
At about noon today, Claude died.
Hope to despair in a few fleeting hours. I believe this was the toughest, emotionally draining day I have ever experienced. We lost a new friend with a common bond, grieved with Helen and deep down, I know it could just as easily been Joy. He has experienced the same pre-transplant testing that Joy did and was otherwise healthy, exercised and active. He was willing to gamble knowing the odds but it did not work to his favor here on earth.
Joy is alert enough to know what happened and although we didn't talk about it much, I am sure this generates thoughts in her mind.
So, we move forward hoping Joy can improve enough to become more mobile and gain more strength and become less dependable on O2. Feeding tube process seems to be going OK and I believe some of the pain issues may be alleviated once some of the drainage tubes are removed especially in her back. These tubes are about an inch in diameter and are threaded between the ribs and into the lung cavity.
A long day comes to an end. Claude, rest in peace.
Joy walked only once today and it was cut rather short due to being lightheaded and the peak of activity for the above mentioned incident. She received some additional pain medication after that walk along with an increase in oxygen to 6 lpm which is the most she has ever received (to the best of my memory) since she began supplemental O2 over a year ago. Her breathing is somewhat irregular at times but I do not know what that means at this time. During our brief time with her, she often asks that we talk and she will listen. Her speech is OK but her sentences are rather short staccato like and usually cut short to catch her breath. I talked with the social worker who is on the Transplant Team today along with two nurse "buddies" that we know and each of them provided me with essentially the same story......................."her progress is about what they generally see and nothing jumps out right now to cause grave concerns". Concerns? Yes, but not necessarily real serious at this time.
Without going back in my earlier updates, I believe I mentioned new friends that we met through the various support groups and Claude is the patient and his wife is Helen. Joy knows Claude a little better than his wife and I know his wife better than Joy. He had the same diagnosis (IPF) as Joy and both were given the same prognosis, about a year to live. Claude has had three previous dry runs and just a few hours after returning home from the last dry run, he was called back Friday afternoon. I shared in their excitement by meeting them in the Admission area and later talked with them while they were in a room waiting to hear if it was a go or another dry run. Finally after several hours, Helen told me it was a "go" and I visited with them again. He was still excited and very optimistic. Before leaving last evening while Claude was in surgery, I visited with Helen and reminded her how smooth Joy's surgery went, how long it took etc. and she too, remained positive but filled with anxiety as you would expect. I could not wait to see her this morning to hear the good news! I met Helen only to hear the words "Wayne, they do not expect Claude to survive the morning". His surgery was about fifteen hours and required fifty (yes 50) units of blood. Apparently he had a bacteria in his body that could not be detected which was the root cause of the bleeding but exacerbated due to extra work the surgeons had to do to the chest cavity. Once the new lungs were transplanted he was moved to Acute Care in the room next to Joy. These rooms are small but about twelve people worked on him constantly including performing additional surgery in that very room.
At about noon today, Claude died.
Hope to despair in a few fleeting hours. I believe this was the toughest, emotionally draining day I have ever experienced. We lost a new friend with a common bond, grieved with Helen and deep down, I know it could just as easily been Joy. He has experienced the same pre-transplant testing that Joy did and was otherwise healthy, exercised and active. He was willing to gamble knowing the odds but it did not work to his favor here on earth.
Joy is alert enough to know what happened and although we didn't talk about it much, I am sure this generates thoughts in her mind.
So, we move forward hoping Joy can improve enough to become more mobile and gain more strength and become less dependable on O2. Feeding tube process seems to be going OK and I believe some of the pain issues may be alleviated once some of the drainage tubes are removed especially in her back. These tubes are about an inch in diameter and are threaded between the ribs and into the lung cavity.
A long day comes to an end. Claude, rest in peace.
Friday, July 6, 2007
A Little Progress
We arrived to find Joy sitting in a chair and absent of the dreaded ventilator. She warned me that she is not going back on the vent regardless of the consequences. She was breathing on her own sufficient that they were willing to remove it but cautioned her that she must absolutely be able to breath deep and exhale to rid her body of higher than desired carbon dioxide levels. She has two different breathing type instruments to help measure her progress. She still has supplemental oxygen. Joy completed at least one long walk today that I know of but the doctor told her that distance and frequency is paramount to her recovery and to keep her new lungs healthy. Insulin IV was introduced today to counter the effects of the type of prednisone and other meds she is taking. Pain levels have been minimal except for a couple brief episodes today possibly associated to the area of the drainage tubes in her back. Her doctor told me that she is about one step behind in the process partially created by the reintroduction of the ventilator and immobility issues. I can tell the imbalance of O2 and CO2 coupled with all of the new meds have impacted her comprehension / processing somewhat but I learned in one of the support groups that variations of this are expected and will dissipate over next few weeks.
We are hoping for a good night and get her off to a fresh start tomorrow and see more activity from her. She appears to be understandably pretty weak and her voice remains fairly weak and sounds like someone talking that is out of breath. The stomach feeding tube is working properly and she does not complain of hunger and ice chips are a delicacy. No apparent infections or rejection issues at this time. Movement to a step down unit may come early next week but with the one on one care she is getting, that is OK. She will probably be in the hospital a month, so there is no point being in a hurry. Moving to the step down unit will give me more flexibility in visiting her.
So for the next day or so, it is deep breathing, walking and chair sitting. Exciting?
Thanks for the many messages and well wishes and all of these will be passed on to Joy in due time.
We are hoping for a good night and get her off to a fresh start tomorrow and see more activity from her. She appears to be understandably pretty weak and her voice remains fairly weak and sounds like someone talking that is out of breath. The stomach feeding tube is working properly and she does not complain of hunger and ice chips are a delicacy. No apparent infections or rejection issues at this time. Movement to a step down unit may come early next week but with the one on one care she is getting, that is OK. She will probably be in the hospital a month, so there is no point being in a hurry. Moving to the step down unit will give me more flexibility in visiting her.
So for the next day or so, it is deep breathing, walking and chair sitting. Exciting?
Thanks for the many messages and well wishes and all of these will be passed on to Joy in due time.
Thursday, July 5, 2007
More Curves
The feedback from my early morning phone call to Acute Care indicated that Joy had a restless night after experiencing episodes of confusion and anxiety to the point they had to restrain her in bed. This could possibly be attributed to lack of sleep, trauma from the surgery, reactions to the new meds but more likely to the low blood gas and variable oxygen levels. They were still planning to insert the stomach feeding tube by early morning.
Upon arrival to the hospital, she was awake and generally alert but said she had not slept much and pain level remained tolerable at a two-three (one to ten scale). An x-ray taken of her stomach revealed the barium had not reached its desired target and it would be necessary to postpone the stomach feeding tube until later in the day. In the interim, they inserted a tube in her nose to the stomach area to accelerate the barium movement. Later, they took her for a walk but Joy said she got really dizzy and they quickly returned her to the bed. She continued to labor with her breathing for quite awhile, at least during our brief time with her.
Later in the afternoon, one of the doctors came out to tell me that Joy's progress was hindered by her refusal to use the Bipap machine and the surgeon told her he must re-install the vent to assist in her breathing process and help with the blood gas / variable oxygen levels. He said she would have the ventilator for at least seventy-two hours. So they gave her some sedation and installed the vent. Another x-ray indicated the barium procedure was satisfactory and they would proceed with the surgery as soon as possible. She had the stomach feeding tube installed and returned to her room late afternoon still sedated and asleep. I do not know when they will begin inserting food into that tube. She was asleep when we left and it was uncertain if they were going to let her sleep the night or gradually awaken her. They had planned to remove the epidural from her back but the vent install has delayed that progress.
We called a few moments ago and they had brought her out of the sleep gradually but she was very uncomfortable with the vent and restraints so they increased the sedation. A chest CT Scan completed sometime in the late afternoon or early evening indicated something of concern but we do not know what that might be.
Tomorrow is another day. Hopefully, a better day.
Wayne
Upon arrival to the hospital, she was awake and generally alert but said she had not slept much and pain level remained tolerable at a two-three (one to ten scale). An x-ray taken of her stomach revealed the barium had not reached its desired target and it would be necessary to postpone the stomach feeding tube until later in the day. In the interim, they inserted a tube in her nose to the stomach area to accelerate the barium movement. Later, they took her for a walk but Joy said she got really dizzy and they quickly returned her to the bed. She continued to labor with her breathing for quite awhile, at least during our brief time with her.
Later in the afternoon, one of the doctors came out to tell me that Joy's progress was hindered by her refusal to use the Bipap machine and the surgeon told her he must re-install the vent to assist in her breathing process and help with the blood gas / variable oxygen levels. He said she would have the ventilator for at least seventy-two hours. So they gave her some sedation and installed the vent. Another x-ray indicated the barium procedure was satisfactory and they would proceed with the surgery as soon as possible. She had the stomach feeding tube installed and returned to her room late afternoon still sedated and asleep. I do not know when they will begin inserting food into that tube. She was asleep when we left and it was uncertain if they were going to let her sleep the night or gradually awaken her. They had planned to remove the epidural from her back but the vent install has delayed that progress.
We called a few moments ago and they had brought her out of the sleep gradually but she was very uncomfortable with the vent and restraints so they increased the sedation. A chest CT Scan completed sometime in the late afternoon or early evening indicated something of concern but we do not know what that might be.
Tomorrow is another day. Hopefully, a better day.
Wayne
Wednesday, July 4, 2007
More Steps in the Right Direction
Joy literally took more steps in the right direction today during her three long walks and sitting in her chair several times as well. Although walking helps to re-build her strength, the principal goal is to get her trained to take deep breaths instead of the shallow breathing she has been conditioned to the last year or so.
During the night, her left lung collapsed which was restored with a "bronc" early this morning. Her blood gas levels are lower than desired and the aforementioned deep breathing is needed to rid her body of carbon dioxide. She remains on supplemental oxygen at rest and while walking and although her levels are not at 100%, they are holding in the low to mid 90's. Remember, the goal is no supplemental oxygen since it has been proven to not be good to the new lungs. She had the third of four "nebulizer" type treatments today, designed to fight of infections that may typically come from air conditioner ducts and airborne bacteria. No additional drainage or IV tubes were removed.
It is becoming more obvious with each passing hour and day, that she will experience progress as well as set backs but there are no serious or long term concerns expressed by the staff that we are aware of. Risks remain quite high however.
Tonight she will have a tube inserted through her throat down to her stomach to be used to feed barium into her prior to early morning X-rays to ensure the doctors know exactly where to place the stomach feeding tube scheduled for surgical insertion tomorrow morning. They are still allowing her to take a sip of water into her mouth, slosh it around and suction it out. Nothing to eat or drink. Firm.
As I have stated previously, in a twelve hour day, we see her for no more than 15-30 minutes max and never with her during any procedure, walking or moving her from bed to chair. The one exception benefited Kayce today. She has been such a trooper and with us every minute night and day but has not seen Joy since Sunday pre-transplant. They are firm in adherence to the rule of no one under 18 near her in Acute Care. Since children seem to carry more contagious diseases than adults, they do not want the added risk. But today, Joy's walking course allowed Kayce to see her and walk by her side for a few moments. A blessing to both.
I have the sense that I am providing more detail than necessary but my intentions are to give you a written snapshot of what Joy and family are experiencing and allow you to share in this journey. Certainly the Beatles song, "A Long and Winding Road" applies to Joy and others with this disease, but we have more hope than pre-transplant. Overall, she is doing pretty good just three days out from surgery. We are really proud of her.
During the night, her left lung collapsed which was restored with a "bronc" early this morning. Her blood gas levels are lower than desired and the aforementioned deep breathing is needed to rid her body of carbon dioxide. She remains on supplemental oxygen at rest and while walking and although her levels are not at 100%, they are holding in the low to mid 90's. Remember, the goal is no supplemental oxygen since it has been proven to not be good to the new lungs. She had the third of four "nebulizer" type treatments today, designed to fight of infections that may typically come from air conditioner ducts and airborne bacteria. No additional drainage or IV tubes were removed.
It is becoming more obvious with each passing hour and day, that she will experience progress as well as set backs but there are no serious or long term concerns expressed by the staff that we are aware of. Risks remain quite high however.
Tonight she will have a tube inserted through her throat down to her stomach to be used to feed barium into her prior to early morning X-rays to ensure the doctors know exactly where to place the stomach feeding tube scheduled for surgical insertion tomorrow morning. They are still allowing her to take a sip of water into her mouth, slosh it around and suction it out. Nothing to eat or drink. Firm.
As I have stated previously, in a twelve hour day, we see her for no more than 15-30 minutes max and never with her during any procedure, walking or moving her from bed to chair. The one exception benefited Kayce today. She has been such a trooper and with us every minute night and day but has not seen Joy since Sunday pre-transplant. They are firm in adherence to the rule of no one under 18 near her in Acute Care. Since children seem to carry more contagious diseases than adults, they do not want the added risk. But today, Joy's walking course allowed Kayce to see her and walk by her side for a few moments. A blessing to both.
I have the sense that I am providing more detail than necessary but my intentions are to give you a written snapshot of what Joy and family are experiencing and allow you to share in this journey. Certainly the Beatles song, "A Long and Winding Road" applies to Joy and others with this disease, but we have more hope than pre-transplant. Overall, she is doing pretty good just three days out from surgery. We are really proud of her.
6 AM Wednesday Early Report
Joy had a somewhat restful night however she experienced periods of confusion which may have been caused by very low oxygen levels and elevated heart rate. I do not know why either of these changed significantly but will attempt to learn more throughout the day. I will update this blog tonight. Thanks for your interest.
Tuesday, July 3, 2007
Mini Steps
Our time with Joy was limited to about 30 minutes total for each of us today due to the various procedures they were doing with her so we did not necessarily get the consistent few moments each hour that we wanted. But that is OK since it means she is being well cared for. They have removed all but two IV line monitoring units and rely upon manual injections into ports in her arms for other meds. They also removed one of the tubes from her neck that led to her heart and this will enable her mobility. The RN said they got her into a bedside chair and take a few steps in the room but she became dizzy and her vitals dropped so they immediately returned her to the bed. Her breathing is shallow so they have placed her on a BIPAP machine (somewhat like a ventilator without the tube down the throat) with oxygen which is designed to produce deeper breathing. Although supplemental oxygen is not ideal for new lungs, they feel this is short term and necessary at this time. They installed a "pick line" IV later today which will also be used for manual injections. Oxygen saturation ideally at 100% remains variable in the low 90%-high 80's at rest. She still has all drainage tubes (front and back) which are connected to vacuum pumps and these appear to be causing the most discomfort. She had a "bronc" today but the pathology results are unknown. The pain management is under control (about a 3 on a 1-10 scale) and she says she feels slightly better. Her voice is weak and although her sentences are short, she is coherent and cognitive skills are sound. I have told her of the many well wishing messages that we have received but it will take time for her to feel like listening to the details.
So the plan is for her to practice deeper breathing and coughing, get her out of the bed, walking and into the chair most of the time in lieu of the bed, wean her from the ventilator type machine and oxygen and install the stomach feeding tube Thursday. She could possibly move to a Step Down Unit soon but will be determined by her progress. The sips of water she was given was incorrect but they will allow for a few ice chips and have given her a small sponge on a stick to dip in water and moisten her lips and mouth.
Certainly a much better day today and although her progress was in mini steps, she appears to be generally meeting expectations.
So the plan is for her to practice deeper breathing and coughing, get her out of the bed, walking and into the chair most of the time in lieu of the bed, wean her from the ventilator type machine and oxygen and install the stomach feeding tube Thursday. She could possibly move to a Step Down Unit soon but will be determined by her progress. The sips of water she was given was incorrect but they will allow for a few ice chips and have given her a small sponge on a stick to dip in water and moisten her lips and mouth.
Certainly a much better day today and although her progress was in mini steps, she appears to be generally meeting expectations.
Monday, July 2, 2007
Rough Day
Written at 8:30PM
After receiving a good progress report early this morning, our optimism quickly changed.
It was a rough day. No, it was a very, very, very rough day!
After the third attempt, they were successful in putting in the epidural however, it took several hours to get the pain to a managed level. Joy was thrashing, pulling, tugging in obvious pain and nothing seemed to be working. Her tears rubbed of to the family as our anxieties grew. Major swelling in her neck and cheeks raised concerns that the lungs may have collapsed. X-rays later confirmed that they did not. Her blood pressure dropped significantly which impacted the level of pain medication she could receive. Although she maintains a fever of about 101 degrees, the concern is minimal at this moment and another "bronc" appears to have ruled out infection in the lungs. Due to the nature of patients in Acute Care, only two family members are allowed each hour and for only very brief minutes. Visiting hours are limited to 9AM to 9PM but if they are working on her, it usually delays our time with her. She has two RN's in her room 24 hours a day and doing a great job with her. Finally, around 5:00PM she seemed to improve and they actually took her off the ventilator, gave her sips of water and had her swallow three pills. She was so relieved to have the ventilator removed and although her voice was a mere whisper, it was so refreshing to hear her voice. Sitting up in bed and maybe brief walk in the room may be on the agenda for her tonight.
Prior to them "kicking us out the night", we left her knowing that once again, she was showing some improvement. Now we rest while she rests. God please, no more days like this.
After receiving a good progress report early this morning, our optimism quickly changed.
It was a rough day. No, it was a very, very, very rough day!
After the third attempt, they were successful in putting in the epidural however, it took several hours to get the pain to a managed level. Joy was thrashing, pulling, tugging in obvious pain and nothing seemed to be working. Her tears rubbed of to the family as our anxieties grew. Major swelling in her neck and cheeks raised concerns that the lungs may have collapsed. X-rays later confirmed that they did not. Her blood pressure dropped significantly which impacted the level of pain medication she could receive. Although she maintains a fever of about 101 degrees, the concern is minimal at this moment and another "bronc" appears to have ruled out infection in the lungs. Due to the nature of patients in Acute Care, only two family members are allowed each hour and for only very brief minutes. Visiting hours are limited to 9AM to 9PM but if they are working on her, it usually delays our time with her. She has two RN's in her room 24 hours a day and doing a great job with her. Finally, around 5:00PM she seemed to improve and they actually took her off the ventilator, gave her sips of water and had her swallow three pills. She was so relieved to have the ventilator removed and although her voice was a mere whisper, it was so refreshing to hear her voice. Sitting up in bed and maybe brief walk in the room may be on the agenda for her tonight.
Prior to them "kicking us out the night", we left her knowing that once again, she was showing some improvement. Now we rest while she rests. God please, no more days like this.
A New Beginning
We arrived at the hospital at 6:45AM and after waiting several hours, Joy learned that her donor was "several time zones away" and it would be late afternoon at the earliest before we knew if this would be a dry run or the real thing. In the interim, we learned that another transplant candidate arrived shortly before Joy but he was sent home after several hours and experienced his second dry run in less than two weeks.
At 4:45PM, Joy was told that "it was a go" and they immediately whisked her off to prepare for transplant. Our emotions were high and filled with a sense of new hope however, we could not forget the grief and pain her donor family must feel. Please share with us in your thoughts and prayers for them.
We received regular progress reports from the operating room and at the conclusion of an eight hour surgery, her doctor told us that Joy came through the operation fine and without complications. She was moved to the Acute Care Unit and will remain there until she has recovered sufficiently to move to a Step Down Unit. She did not require blood transfusions. On Monday morning, she will have an epidural placed in her back for pain management before she awakens and will have additional surgery in a couple days to place the stomach feeding tube which will remain until after the Stomach Wrap surgery is completed in a few weeks. The risks remain high especially over the next few hours, days and weeks.
Caroline, Cathy, Kevin and Crystal traveled from near and far to be here to support their mother and they too, were relieved to see Joy for a few precious minutes about 2:00 AM Monday. We all ventured home for a couple hours sleep and will regroup at sunrise.
At 7:30AM Monday, I called the hospital and was told Joy was doing pretty good and they did not have any immediate concerns. Her surgeon had already been in and was pleased with her post surgery progress. They plan to place the epidural within the hour and will perform her first bronchiscope to test her new lungs. She is expected to be awakened later today however will not be able to speak until the ventilator is removed. Can you imagine Joy not being able to talk?
The medical staff has STRONGLY advised us that Joy CANNOT tolerate flowers, plants or fresh fruits due to bacteria and fungus issues and therefore, in lieu of these I know that she would appreciate a blog message or a card. Our apartment address is 11391-103 Involute Place Raleigh, North Carolina 27617.
Joy will not be a happy camper or play well with others over the next several days but we will do our best to keep her focused. Your prayers have worked fantastic so God is listening. Don't stop.
At 4:45PM, Joy was told that "it was a go" and they immediately whisked her off to prepare for transplant. Our emotions were high and filled with a sense of new hope however, we could not forget the grief and pain her donor family must feel. Please share with us in your thoughts and prayers for them.
We received regular progress reports from the operating room and at the conclusion of an eight hour surgery, her doctor told us that Joy came through the operation fine and without complications. She was moved to the Acute Care Unit and will remain there until she has recovered sufficiently to move to a Step Down Unit. She did not require blood transfusions. On Monday morning, she will have an epidural placed in her back for pain management before she awakens and will have additional surgery in a couple days to place the stomach feeding tube which will remain until after the Stomach Wrap surgery is completed in a few weeks. The risks remain high especially over the next few hours, days and weeks.
Caroline, Cathy, Kevin and Crystal traveled from near and far to be here to support their mother and they too, were relieved to see Joy for a few precious minutes about 2:00 AM Monday. We all ventured home for a couple hours sleep and will regroup at sunrise.
At 7:30AM Monday, I called the hospital and was told Joy was doing pretty good and they did not have any immediate concerns. Her surgeon had already been in and was pleased with her post surgery progress. They plan to place the epidural within the hour and will perform her first bronchiscope to test her new lungs. She is expected to be awakened later today however will not be able to speak until the ventilator is removed. Can you imagine Joy not being able to talk?
The medical staff has STRONGLY advised us that Joy CANNOT tolerate flowers, plants or fresh fruits due to bacteria and fungus issues and therefore, in lieu of these I know that she would appreciate a blog message or a card. Our apartment address is 11391-103 Involute Place Raleigh, North Carolina 27617.
Joy will not be a happy camper or play well with others over the next several days but we will do our best to keep her focused. Your prayers have worked fantastic so God is listening. Don't stop.
Sunday, July 1, 2007
We're Off
The phone rang at 6:12AM. The surgeon is off to examine a set of lungs and we are off to the hospital. This could be a dry run or the real thing. We are shaky, but fine. We keep you abreast with updates as time allows. Thanks for your many kind words and prayers.
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