My intention was to do an update last night, but trying to clear my mind and get a bit of sleep took over. How can someone feel so tired all the time? And if I feel this tired I can't help but wonder how tired Paul must be feeling.
Yesterday turned out to be a busy day. They got Paul out of bed early and he had his breathing treatment. Actually breathing treatments are every four hours. They are still trying to break up all the yucky stuff in his lungs so that his breaths will not be so labored. After the morning treatment he was informed that Physical Therapy would be coming. So he had P.T come and do an assessment on what he needs. After that Occupational Therapy came in to do an assessment of what he will be needed. Paul continues to have his blood sugars check every hour. It was a very busy day and he was exhausted. In the late afternoon we both needed a nap so the nurse was kind enough to pull the curtains and not let anyone bother us for an hour. The nurse even offered me a hospital bed to lay in, I told her I really appreciated that but I am highly allergic to hospital beds and they give me a rash.
Last night as Paul dozed off, his heart rate once again went up. He continues to struggle with his heart rate maintaining a normal sinus rhythm. This morning I was told that he went into AFIB again, it was brief, but all the same it was there. They will be doing an Echocardiogram sometime today. This brought up a lot of questions from Paul. One was..... What's next? How much more do we put his body through? At what point is his quality of life compromised to where the quantity is not important? I've asked for a Social Worker to come talk to us both as I think we a starting to feel the effect of him being in ICU for so long and the exhaustion for us both is taking a toll.
We never even discussed the possibility of this outcome. Him ending up without an esophagus was never one of listed complications. We are struggling with questions and need answers. I have a list of questions and will be asking the doctor to set aside some time to talk with us both.
That is the update for this morning.
Hugs to all our dear families and friends.
Jo
Places traveled through
Monday, June 24, 2013
Sunday, June 23, 2013
This is Sunday, June 23, 2013
Paul asked me what day it was this morning when I walked into his ICU room. I hate to admit it, but I didn't know. I had to check the calendar that is hanging above the board in his room. We are both losing the concept of days as they blend together.
Yesterday,Saturday, was another roller coaster day. When I arrived the doctors had mentioned the possibility of Paul going back on the ventilator. My heart sank. When I asked him how he was feeling, he gasped and said "I feel like I'm dying". Needless to say I felt helpless and saddened. We have come so far and for him to feel so bad hurt my heart. I sat on the bed and told him he needed to take deep breaths and that I loved him too much to let go. I told him we will get through this. His exhaustion from the labored breathing was making him feel extremely tired. As we sat calmly talking his oxygen level improved and his heart rate slowed. The doctor said that he was going to go check all the numbers from the night before and then make a decision regarding putting him back on the ventilator. When the doctor came back, he saw the improvement and said they would hold off for a while. I sat with Paul and we concentrated on slow deep breathes. We focused on the love of our family and friends. We talked about being bathed in the warmth of healing energy and light. We gave thanks for all the prayers being offered up for healing and peace. We felt immersed in peace and love. I told him we were in a bubble of absolute, unconditional love and nothing negative or harmful could reach us. I told him that our love was stronger than anything in this world. His numbers starting improving dramatically and the ventilator was not needed.
Over yesterday and this morning, Paul is trying to remember and comprehend everything that has happened over the last two weeks. He was in a fog about the second surgery. He did not know that he was paralyzed or that he was on a ventilator. He talked of some really off the wall things and we owed about it. The drugs they gave him will take a couple of days to get completely out of his system. He could not stand on his own yesterday and i was told that is a side effect of the paralysis and he will need some physical therapy to help with the muscles getting stronger. The swelling in his hands and arms has gone down to where his fingers look normal again. We have gone over everything several times with him asking questions. I am focusing only on the positive. He now knows it was very serious, he knows he was in critical condition for a few days and he knows the esophagectomy surgery failed. He also knows that we, him and I, will get through this. It is just another small detour on our journey together.
This morning he is actually looking at emails on the laptop, concerned that he needs to take care of some minor work things and smiled at me with eyes that made all the worries briefly go away. He is healing. Out of the eighteen I.V.'s he had only four are left. He is receiving food once again via the J Tube. My main concern is his heart as they have not been able to get him off the medicine that is keeping him out of AFIB. He continues to receive insulin, but for some reason, that does not worry me in the least.
My emotions are being shelved and put on hold so that I can remain strong for him. I told him when we get home we are hanging the "do not disturb" sign, turning off the phones and spending a couple of days resting and cuddling.
My hope today is for Paul to become strong enough to leave ICU so we can look toward the idea of going home.
I will try to do an update tonight.
Hugs to all,
Jo
Yesterday,Saturday, was another roller coaster day. When I arrived the doctors had mentioned the possibility of Paul going back on the ventilator. My heart sank. When I asked him how he was feeling, he gasped and said "I feel like I'm dying". Needless to say I felt helpless and saddened. We have come so far and for him to feel so bad hurt my heart. I sat on the bed and told him he needed to take deep breaths and that I loved him too much to let go. I told him we will get through this. His exhaustion from the labored breathing was making him feel extremely tired. As we sat calmly talking his oxygen level improved and his heart rate slowed. The doctor said that he was going to go check all the numbers from the night before and then make a decision regarding putting him back on the ventilator. When the doctor came back, he saw the improvement and said they would hold off for a while. I sat with Paul and we concentrated on slow deep breathes. We focused on the love of our family and friends. We talked about being bathed in the warmth of healing energy and light. We gave thanks for all the prayers being offered up for healing and peace. We felt immersed in peace and love. I told him we were in a bubble of absolute, unconditional love and nothing negative or harmful could reach us. I told him that our love was stronger than anything in this world. His numbers starting improving dramatically and the ventilator was not needed.
Over yesterday and this morning, Paul is trying to remember and comprehend everything that has happened over the last two weeks. He was in a fog about the second surgery. He did not know that he was paralyzed or that he was on a ventilator. He talked of some really off the wall things and we owed about it. The drugs they gave him will take a couple of days to get completely out of his system. He could not stand on his own yesterday and i was told that is a side effect of the paralysis and he will need some physical therapy to help with the muscles getting stronger. The swelling in his hands and arms has gone down to where his fingers look normal again. We have gone over everything several times with him asking questions. I am focusing only on the positive. He now knows it was very serious, he knows he was in critical condition for a few days and he knows the esophagectomy surgery failed. He also knows that we, him and I, will get through this. It is just another small detour on our journey together.
This morning he is actually looking at emails on the laptop, concerned that he needs to take care of some minor work things and smiled at me with eyes that made all the worries briefly go away. He is healing. Out of the eighteen I.V.'s he had only four are left. He is receiving food once again via the J Tube. My main concern is his heart as they have not been able to get him off the medicine that is keeping him out of AFIB. He continues to receive insulin, but for some reason, that does not worry me in the least.
My emotions are being shelved and put on hold so that I can remain strong for him. I told him when we get home we are hanging the "do not disturb" sign, turning off the phones and spending a couple of days resting and cuddling.
My hope today is for Paul to become strong enough to leave ICU so we can look toward the idea of going home.
I will try to do an update tonight.
Hugs to all,
Jo
Friday, June 21, 2013
Update on Paul
I wish I could individually thank every single person who has sent well wishes, asked for updates, said a prayer, email a question or asked for an update, but then... That would take months!
Paul is doing well. They have removed him for the ventilator. He is somewhat awake and talking. The doctors want him to rest tonight as now the healing needs to began all over again. Paul actually said "Caddie Shack", What he meant was "Groundhog Day" Because afterwords he said "Deja vu"
We are not completely out of the woods. The good news is they have moved almost half of the I.V. Medications, his heart is a steady rhythm with very few PVC or missed beats, but he is still on the heart regulating medications.
Tonight he needs to rest and breath deeply so as not to get pneumonia. He will be getting
respiratory treatments every four hours. If he becomes to tired from breathing or the breathing becomes labored they will put him back on the ventilator. They are checking his blood surgery every couple of hours and giving insulin as needed. His temperature has been within normal limits throughout the day.
I will be going to sleep in a bed tonight. Elizabeth has rented a place for the month so that I have a place to get away from the hospital to get some I disturbed rest and a hot shower. Tonight I really need both. I will try to get back before the 6:30 am Resident Rounds and the nurses shift change.
To all our friends and families, yes we have many families..... Thank you
Jo and Paul
Paul is doing well. They have removed him for the ventilator. He is somewhat awake and talking. The doctors want him to rest tonight as now the healing needs to began all over again. Paul actually said "Caddie Shack", What he meant was "Groundhog Day" Because afterwords he said "Deja vu"
We are not completely out of the woods. The good news is they have moved almost half of the I.V. Medications, his heart is a steady rhythm with very few PVC or missed beats, but he is still on the heart regulating medications.
Tonight he needs to rest and breath deeply so as not to get pneumonia. He will be getting
respiratory treatments every four hours. If he becomes to tired from breathing or the breathing becomes labored they will put him back on the ventilator. They are checking his blood surgery every couple of hours and giving insulin as needed. His temperature has been within normal limits throughout the day.
I will be going to sleep in a bed tonight. Elizabeth has rented a place for the month so that I have a place to get away from the hospital to get some I disturbed rest and a hot shower. Tonight I really need both. I will try to get back before the 6:30 am Resident Rounds and the nurses shift change.
To all our friends and families, yes we have many families..... Thank you
Jo and Paul
Thursday, June 20, 2013
Thursday Night
After a very emotional and unknowing day Paul is improving. Heart rate is in normal sinus rhythm and they have weaned him off the medication that kept him paralyzed. He shows signs of understanding and small movement. he squeezed my hand! He continues to be sedated and is on the ventilator. Removing him from the ventilator is going to be a slow process as they have to make sure his oxygen level is good and he does not cough.
It was a very hard day of up and downs. His heart rhythms, blood pressure and temperature were all of the range of highs and lows. But he is currently stable and resting. Tomorrow they will try to get him off some of the many drugs that are assisting his stability.
As the doctor said "we are not out of the woods yet, but we a on the right road"
Thank you all for your prayers. Now I will get some much needed sleep. Hope my mind shuts off and allow me to sleep.
Hugs,
Jo and Paul too.....
It was a very hard day of up and downs. His heart rhythms, blood pressure and temperature were all of the range of highs and lows. But he is currently stable and resting. Tomorrow they will try to get him off some of the many drugs that are assisting his stability.
As the doctor said "we are not out of the woods yet, but we a on the right road"
Thank you all for your prayers. Now I will get some much needed sleep. Hope my mind shuts off and allow me to sleep.
Hugs,
Jo and Paul too.....
Paul
Paul is still In critical condition. He is medically paralyzed and heavily sedated. The ventilator continues to do his breathing.
His heart rate has been in ventricular tachacardia all day. He had a temperature of 103 or higher most of Wednesday. The temperature came down with the help of a cooling mattress Wednesday night but his heart continues to race.
It is a struggle to get the organs to work together. When they slow down the heart rate,the blood pressure drops. When they add fluids to get the kidneys flushed, the lungs become saturated.
The doctor has said as long as all the vital organs are working,we are okay.
So for now, we are okay.
Jo
His heart rate has been in ventricular tachacardia all day. He had a temperature of 103 or higher most of Wednesday. The temperature came down with the help of a cooling mattress Wednesday night but his heart continues to race.
It is a struggle to get the organs to work together. When they slow down the heart rate,the blood pressure drops. When they add fluids to get the kidneys flushed, the lungs become saturated.
The doctor has said as long as all the vital organs are working,we are okay.
So for now, we are okay.
Jo
Wednesday, June 19, 2013
Morning update
Paul's night was fair.
This morning they did a brochoscope to check on the newly created "flap" it is doing okay.
His temperature is currently 102 degrees and blood pressure is down but his heart rate remains high.
Paul heavily sedated and is medically paralyzed to prevent him from trying to breath on his own. They want the ventilator to the work for him. They said they will probably try to remove him from the ventilator later today, they do not want to damage the new flap.
I continue to remind myself that the doctor said the next 48hours are critical and not worry. 48 hours.... 2880 minutes........ We will get through this even if it means taking one minute at a time.
I hold his hand and tell him he is doing well. I let him know that all of you are praying for him. I tell him he is surrounded by a beautiful and peace filled energy that is being sent by all our friends and families.
I want to crawl in to that bed with him and hold him so close to me, but I can't so holding his hand will has to be sufficient for now.
I will post an update later this evening.
Hugs and love,
Jo and Paul too
This morning they did a brochoscope to check on the newly created "flap" it is doing okay.
His temperature is currently 102 degrees and blood pressure is down but his heart rate remains high.
Paul heavily sedated and is medically paralyzed to prevent him from trying to breath on his own. They want the ventilator to the work for him. They said they will probably try to remove him from the ventilator later today, they do not want to damage the new flap.
I continue to remind myself that the doctor said the next 48hours are critical and not worry. 48 hours.... 2880 minutes........ We will get through this even if it means taking one minute at a time.
I hold his hand and tell him he is doing well. I let him know that all of you are praying for him. I tell him he is surrounded by a beautiful and peace filled energy that is being sent by all our friends and families.
I want to crawl in to that bed with him and hold him so close to me, but I can't so holding his hand will has to be sufficient for now.
I will post an update later this evening.
Hugs and love,
Jo and Paul too
Tuesday, June 18, 2013
Stubborn Bastard
Before going into surgery, Paul put his hand on my cheek and said " Don't worry, I'm a stubborn bastard " and "I want that to be the name of the next blog"
So here it is.... The next blog.
Paul is out of surgery. The deteriorated newly built esophagus was removed, what could be salvaged was replaced back into the abdomen. The deterioration actually ate through to his Larynx, but there was not any long term damage. Thank goodness they did surgery today, if they had waited the stomach acid would have eaten it's way through to the windpipe.
Paul will be kept paralyzed and sedated for the next twenty four hours. He will be on a venterlator to assess his breathing. The surgeon said the next forty-eight hours are critical. Once again we wait and let go of things we do not and can not control.
I hesitate to post anything else because I prefer to give Paul time to get through this period and post later.
I want to thank everyone for all the wonderful support and good wishes, reading them has given me strength to endure the emotional roller coaster of this small detour on our journey in life.
Thank you all for being part of our journey, you all make our lives enriched and blessed.
Hugs,
Jo and one Stubborn Bastard
So here it is.... The next blog.
Paul is out of surgery. The deteriorated newly built esophagus was removed, what could be salvaged was replaced back into the abdomen. The deterioration actually ate through to his Larynx, but there was not any long term damage. Thank goodness they did surgery today, if they had waited the stomach acid would have eaten it's way through to the windpipe.
Paul will be kept paralyzed and sedated for the next twenty four hours. He will be on a venterlator to assess his breathing. The surgeon said the next forty-eight hours are critical. Once again we wait and let go of things we do not and can not control.
I hesitate to post anything else because I prefer to give Paul time to get through this period and post later.
I want to thank everyone for all the wonderful support and good wishes, reading them has given me strength to endure the emotional roller coaster of this small detour on our journey in life.
Thank you all for being part of our journey, you all make our lives enriched and blessed.
Hugs,
Jo and one Stubborn Bastard
Emergency Surgery this afternoon
The surgeon came in this morning to do an endoscopy to check on the attachment of the stomach creating the new esophagus. The news is not good...
Paul has a collapsed lung and 9centimeters of the new esophagus has deteriorated and will have to be removed before it can become infected. Paul will be going back into surgery this afternoon after 3:00 pm. They will put what is left of the healthy (new esophagus) stomach back into the abdomen. A repeat surgery to rebuild a new esophagus will take place after everything is healed.
I will update later..
Jo
Paul has a collapsed lung and 9centimeters of the new esophagus has deteriorated and will have to be removed before it can become infected. Paul will be going back into surgery this afternoon after 3:00 pm. They will put what is left of the healthy (new esophagus) stomach back into the abdomen. A repeat surgery to rebuild a new esophagus will take place after everything is healed.
I will update later..
Jo
Monday, June 17, 2013
June 17, 2013
Today's update.
I feel like I'm doing a daily school assignment, but if this helps to keep all our friends and family updated then it is what I need to do.
Good news:
Paul got up and walked today. Even with having a couple drainage tubes abd multiple I.V.'s, he walked about 50 feet. Upon coming back to his room he smiled and said to the nurses " Think I'll take this one!" His sense of humor continues even when he is not feeling 100%. He is doing better on his breathing and the coughing which is so vital to clearing his lungs grows stronger each day.
An echocardiogram was done to assess his heart and maybe come to a desicion as to why he continues to go into atrial fibrillation with they remove him from the amiodrone medication.
Not so good news:
They did not do the "swallow test" today as the surgeon wants to do an endoscopy and take a physical look at the inside of Paul's new esophagus. So the test will be delayed for now. I have not heard the results of the echocardiogram.
We are taking it all "One day at a time" and taking joy in the little things that mark progress.... The atrial I.V. Line being removed from his arm, the ability of being able to cough, being able to swab his mouth by himself... Small steps but in the scheme of things, very big achievements!
Thank you all for the support through prayers, instant messages, comments, cards, well wishes, positive energy and most of all love.
Let's see what tomorrow brings.
Hugs to all,
Jo
I feel like I'm doing a daily school assignment, but if this helps to keep all our friends and family updated then it is what I need to do.
Good news:
Paul got up and walked today. Even with having a couple drainage tubes abd multiple I.V.'s, he walked about 50 feet. Upon coming back to his room he smiled and said to the nurses " Think I'll take this one!" His sense of humor continues even when he is not feeling 100%. He is doing better on his breathing and the coughing which is so vital to clearing his lungs grows stronger each day.
An echocardiogram was done to assess his heart and maybe come to a desicion as to why he continues to go into atrial fibrillation with they remove him from the amiodrone medication.
Not so good news:
They did not do the "swallow test" today as the surgeon wants to do an endoscopy and take a physical look at the inside of Paul's new esophagus. So the test will be delayed for now. I have not heard the results of the echocardiogram.
We are taking it all "One day at a time" and taking joy in the little things that mark progress.... The atrial I.V. Line being removed from his arm, the ability of being able to cough, being able to swab his mouth by himself... Small steps but in the scheme of things, very big achievements!
Thank you all for the support through prayers, instant messages, comments, cards, well wishes, positive energy and most of all love.
Let's see what tomorrow brings.
Hugs to all,
Jo
Sunday, June 16, 2013
Happy Father's Day
Happy Father's Day to all the dads out there. Hope your day was a good one.
Paul's heart rate went wild again when they discontinued the medicine that is use to stop the atrial fibrillation. It took over seven hours to get it back under control. This was actually a shorter time then the last time they tried to stop it. So we do have progress. They put him back on the meds and will try to wean him off again as the medicine is not for long term usage. He has had a couple of really good coughing spells that have loosened the fluid in the lungs. This is great and will allow him to breath even better. We continue to work on lung capacity with respiratory therapy every four hours.
My daughter Elizabeth stops by often to lend her support and checks that I am getting rest and a break from the hospital. My cousin Mary flew in for the weekend to be with us. So for all those who are worried about me..... I am okay and have angels looking after me!
Paul is looking forward to a peace filled night with minimum interruptions so he can get some much needed sleep. We are praying that he continues to maintain a normal sinus rhythm and good oxygen numbers through the night and tomorrow.
Paul enjoyed all the Father Day wishes and thanks each one of you for all your prayers and good wishes.
Jo
Paul's heart rate went wild again when they discontinued the medicine that is use to stop the atrial fibrillation. It took over seven hours to get it back under control. This was actually a shorter time then the last time they tried to stop it. So we do have progress. They put him back on the meds and will try to wean him off again as the medicine is not for long term usage. He has had a couple of really good coughing spells that have loosened the fluid in the lungs. This is great and will allow him to breath even better. We continue to work on lung capacity with respiratory therapy every four hours.
My daughter Elizabeth stops by often to lend her support and checks that I am getting rest and a break from the hospital. My cousin Mary flew in for the weekend to be with us. So for all those who are worried about me..... I am okay and have angels looking after me!
Paul is looking forward to a peace filled night with minimum interruptions so he can get some much needed sleep. We are praying that he continues to maintain a normal sinus rhythm and good oxygen numbers through the night and tomorrow.
Paul enjoyed all the Father Day wishes and thanks each one of you for all your prayers and good wishes.
Jo
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