8:30 PM and this is my daily update.
I feel like I should be saying something profound like the news casters do, not the everyday news casters, but the important ones: Andy Ronney, Walter Cronkite, Ted Koppel. I'll have to think up a catching phrase... or maybe someone can suggest something.
Anyway here is the update on Paul.
Late last night we experience an episode. For lack of what else to call it, I am calling it "an Episode"
I did manage to lay down with Paul for an hour. He and I held hands. Since he was still under the effects of the medicine given to keep him relaxed and sedated during the bronchoscopy, there wasn't much communication. I got up after an hour, went to get my night time drink before checking emails and trying to relax. I tried getting Paul to acknowledge me several times, but thought to myself that he was extremely tired so i did not pursue getting him to respond. At approximately midnight, while I sat reading I noticed that Paul was staring up at the ceiling, I noticed this went one for about 15 minutes so I went over to the bed and tried to get his attention. His eyes would not focus on me, he did not respond to either the nurses or the charge nurse. He did not respond to pain, light or touch either. His blood pressure was dropping and so was his oxygen level. They up'ed his oxygen since since he is still on the ventilator and gave him a medicine to counteract the pain medicine he has been on. Very slowly his eyes cleared and he responded to his name. It was like walking into hell and back. I stayed awake all night as I was terrified to go to sleep.
The doctor this morning did another bronchoscope to clear up the fluid in his lungs, being on the ventilator prevents him from coughing. The doctor does have pneumonia. They currently have him on six antibiotics. They have changed the dosage and combinations. So far so good, Paul has not had a fever over 101.4 all afternoon.
This afternoon they did put in an arterial line to replace the one they had removed at the beginning of the week. This is so that they do not have to stick him every time they want to draw blood. This was a challenge as Paul still has the blood clots in either arm, but the doctors feel that they are low priority at this time. They were able to do this with the help of using an ultrasound machine to guide them into the artery.
The most important is getting Paul off the ventilator so that the repair in the trachea can heal. There is a small leak in the repair and it is leaking air into the chest cavity, but the doctor feels that getting him off the ventilator will allow the repair to heal and close that leak.
On a very good note, Paul has slept a good rest filled sleep this afternoon. His eyes have remained clear and he is alert when people speak to him and he can follow commands.
Tonight I will try to sleep. With all the emotions and my brain not being able to shut itself off, sleep eludes me.
Good night and thank you for all the comments, well wishes, good positive energy and prayers. I do actually feel the love and peace that is being sent to us. It surrounds us with a beautiful energy that continues to keep us both hanging in there!
Jo
Places traveled through
Thursday, July 4, 2013
Wednesday, July 3, 2013
July 3, 2013
Paul had a Bronchoscop this morning at 6:30 am to clean out the fluid that is in his lungs. There is a small leak in the repair.
9:30 am they did another bronchoscope. Dr. DeMeester would like him off the ventilator but the ICU doctor feels that he needs to be on it a bit longer to build up his strenght.
He has had a fever on and off all day. The nurse put ice packs under each arm and behind his neck to help bring it down. They now have him under a cooling blanket.
5:30 pm Dr. DeMeester made rounds and ordered a chest xray as he did not like the look of Paul's breathing. The chest x ray did not show any damage to the diaphragm. If they take Paul off the ventilator and he needs assisted breathing again, they will have to do a tracheotomy.
They have Paul on several antibiotics and are doing repeat blood and lung cultures. They do not know what is causing the infection.
8:00 pm tonight they did another bronchoscope. I asked the doctor "Every time you do a Bronchoscopy, doesn't that open him up to infection?" Dr. Tatum said "Yes, but we need to get the fluid out of his lungs, as long as he is on the ventilator he can not cough it up" Seems like a catch twenty two......damned if we do and damned if we don't.
Paul's temp is back up to 103 degrees. After the last bronchoscopy his blood pressure dropped very low. The doctor will be putting in an A-Line to give more meds.
I am going to climb in bed and hold him because I can not do anything else.
Jo
9:30 am they did another bronchoscope. Dr. DeMeester would like him off the ventilator but the ICU doctor feels that he needs to be on it a bit longer to build up his strenght.
He has had a fever on and off all day. The nurse put ice packs under each arm and behind his neck to help bring it down. They now have him under a cooling blanket.
5:30 pm Dr. DeMeester made rounds and ordered a chest xray as he did not like the look of Paul's breathing. The chest x ray did not show any damage to the diaphragm. If they take Paul off the ventilator and he needs assisted breathing again, they will have to do a tracheotomy.
They have Paul on several antibiotics and are doing repeat blood and lung cultures. They do not know what is causing the infection.
8:00 pm tonight they did another bronchoscope. I asked the doctor "Every time you do a Bronchoscopy, doesn't that open him up to infection?" Dr. Tatum said "Yes, but we need to get the fluid out of his lungs, as long as he is on the ventilator he can not cough it up" Seems like a catch twenty two......damned if we do and damned if we don't.
Paul's temp is back up to 103 degrees. After the last bronchoscopy his blood pressure dropped very low. The doctor will be putting in an A-Line to give more meds.
I am going to climb in bed and hold him because I can not do anything else.
Jo
Tuesday, July 2, 2013
Tuesday July 2, 2013
Paul is still on the ventilator. They did unhook the ventilator for an hour to monitor his breathing. After a short while he became tired and the breathing labored. The ICU doctors and the surgeon met and decided that it would be good for him to stay on it over night. Paul asked (wrote) the doctor for something to help him sleep and a small increase on his pain medicine. All the doctors agreed that a good night sleep would probably do him some good. Respiratory Therapy will be in at 11:30, but after that he should be able to get in a couple of hours rest.
Overall it was an okay day. He still continues to feel hot and asks for an ice pack at the base of his neck and a icy cold compress for his head. The room is actually cold but if it keeps him happy we are all okay with it. The Plastic Surgeon who assisted in the Operation yesterday came to speak with us. He stated they used some muscle from Paul's back and some muscle from the front of his chest. They also cut away at a few of his ribs so that they could get in his cavity to make the necessary repairs. The Thoracic surgeon did a bronchscopy this morning and he stated the repairs looked healthy. There may be a very small hole, but the muscle should heal over it because it is so small no air is escaping from what they can see. They also sucked up some of the mucus in his lungs and a small bit of blood. Paul will have another bronchscopy in the morning on Wednesday to check on the repair and suck out any more mucus that may develop overnight. If it all looks good they will again try to let him breath on his own and hopefully remove the ventilator. I am not pushing them to hurry on anything. I'd rather they take it slow, check and recheck everything. We have had enough set-backs on this hospital stay. I am praying for the road to recovery to stretch out in front of us and we can start walking on it! One baby step at a time if need be, but it will be a start.
We have always focused on the positive and will continue to do so.
We are both going to get some rest tonight. Paul especially needs the sleep to rebuild his stamina, and me? Well I'm just plain tired.
Good night my family and friends.
Jo
Overall it was an okay day. He still continues to feel hot and asks for an ice pack at the base of his neck and a icy cold compress for his head. The room is actually cold but if it keeps him happy we are all okay with it. The Plastic Surgeon who assisted in the Operation yesterday came to speak with us. He stated they used some muscle from Paul's back and some muscle from the front of his chest. They also cut away at a few of his ribs so that they could get in his cavity to make the necessary repairs. The Thoracic surgeon did a bronchscopy this morning and he stated the repairs looked healthy. There may be a very small hole, but the muscle should heal over it because it is so small no air is escaping from what they can see. They also sucked up some of the mucus in his lungs and a small bit of blood. Paul will have another bronchscopy in the morning on Wednesday to check on the repair and suck out any more mucus that may develop overnight. If it all looks good they will again try to let him breath on his own and hopefully remove the ventilator. I am not pushing them to hurry on anything. I'd rather they take it slow, check and recheck everything. We have had enough set-backs on this hospital stay. I am praying for the road to recovery to stretch out in front of us and we can start walking on it! One baby step at a time if need be, but it will be a start.
We have always focused on the positive and will continue to do so.
We are both going to get some rest tonight. Paul especially needs the sleep to rebuild his stamina, and me? Well I'm just plain tired.
Good night my family and friends.
Jo
Monday, July 1, 2013
Post Third Surgery
Paul was in surgery for five hours. Dr. DeMeester, the surgeon said that when they got in to look at the trachea, they found that it had deteriorated more. It could have been because of the 5 weeks of radiation and the infection, he was not sure. They took a piece of muscle from his back and another piece of muscle from his heart area. They cut a few pieces of his ribs and patched up the holes in the trachea.
Paul is on a ventilator to help aid his breathing. After surgery he seemed okay. The surgeon stated he does not want Paul to be in any pain tonight and that he wants him to rest. They will do a bronchscope in the morning to look at the inside and see how it is healing.
I went out of the room to get dinner and made a couple of phone calls. When I came back Paul seemed out of sorts. He is having a hard time communicating because he can not talk. Writing at the moment is a laborious task.
As I was holding his hand I asked them to take his temperature. It was 101.4. So they put some ice under each armpit. Paul seems to be struggling. I asked him if he was in pain, he shook his head "No". I asked him what was wrong. He pointed to his head and his heart. I asked him if he was worried, he shook his head yes. I told him not to worry, we'll get through this. He is clearly mentally stressed about all that has happened over the last three weeks. I feel the hardest thing, is tat he knows he still needs another surgery to reconstruct an esophagus so that he will be able to eat normally.
He seems very agitated tonight compared to when he returned from surgery. It is almost as if the reality of everything has hit him full force. They have given him something to help calm him down and I will keep watch throughout the night. All i can do is continue to express my love to him and enforce that "We will be okay"
I am praying that he finds peace tonight so that he can rest his mind and body.
I have hung up all the cards he has received so that he can look at them and draw good energy from them.
Thank you for the continued prayers, positive energy and love.
Jo
Paul is on a ventilator to help aid his breathing. After surgery he seemed okay. The surgeon stated he does not want Paul to be in any pain tonight and that he wants him to rest. They will do a bronchscope in the morning to look at the inside and see how it is healing.
I went out of the room to get dinner and made a couple of phone calls. When I came back Paul seemed out of sorts. He is having a hard time communicating because he can not talk. Writing at the moment is a laborious task.
As I was holding his hand I asked them to take his temperature. It was 101.4. So they put some ice under each armpit. Paul seems to be struggling. I asked him if he was in pain, he shook his head "No". I asked him what was wrong. He pointed to his head and his heart. I asked him if he was worried, he shook his head yes. I told him not to worry, we'll get through this. He is clearly mentally stressed about all that has happened over the last three weeks. I feel the hardest thing, is tat he knows he still needs another surgery to reconstruct an esophagus so that he will be able to eat normally.
He seems very agitated tonight compared to when he returned from surgery. It is almost as if the reality of everything has hit him full force. They have given him something to help calm him down and I will keep watch throughout the night. All i can do is continue to express my love to him and enforce that "We will be okay"
I am praying that he finds peace tonight so that he can rest his mind and body.
I have hung up all the cards he has received so that he can look at them and draw good energy from them.
Thank you for the continued prayers, positive energy and love.
Jo
Third surgery in 3 weeks
Paul is currently in his third surgery since arriving at the hospital on June 11th. The doctors are going to try to repair the trachea by creating a flap out of a muscle. The trachea was damaged when the gastric pull-up deteriorated and caused a hole in his trachea. They had patched the hole in the second surgery but the patch did not work. Paul was breathing oxygen into his chest cavity. The hole in Paul's trachea is preventing him for getting the oxygen he needs to survive. Needless to say the esophagectomy was not a success. He has a couple of blood clots in his arm and near his neck, but the doctors are not concerned that they will cause any problems.
I am concerned. I am praying.
He has been through so much and I hope that this surgery will lead him to the road to recovery, healing and home. We do not know what the future will hold but we are determined to approach it head on! Paul's spirits this morning were very good. He continues to be positive in spite of all the set backs. I continue to climb into the hospital bed and talk with him, hold him and give him all the healing energy I can muster.
Paul went into surgery at 9:00 AM. The surgeon got him into surgery as soon as he could, working with the Operating Room to "fit him in". I have had three different doctors give me three different times regarding how long surgery will take, so.... I will not think about any of the times and be patience.
Not much more to say at this time.....
Hugs,
Jo
I am concerned. I am praying.
He has been through so much and I hope that this surgery will lead him to the road to recovery, healing and home. We do not know what the future will hold but we are determined to approach it head on! Paul's spirits this morning were very good. He continues to be positive in spite of all the set backs. I continue to climb into the hospital bed and talk with him, hold him and give him all the healing energy I can muster.
Paul went into surgery at 9:00 AM. The surgeon got him into surgery as soon as he could, working with the Operating Room to "fit him in". I have had three different doctors give me three different times regarding how long surgery will take, so.... I will not think about any of the times and be patience.
Not much more to say at this time.....
Hugs,
Jo
Saturday, June 29, 2013
Saturday Night
We will be talking with the surgeon tomorrow, yes on Sunday, regarding the possibility of a third surgery. After going over the last bronchoscope the doctors feel that the patch that was done last week on the trachea has failed. There is a hole in the repair that is preventing Paul from breathing properly. They will have to go back in and repair the repair. I have come to the conclusion that Paul's body really does not like being invaded!
Paul does have a blood clot in his right forearm. I will be asking the surgeon about the added risks involved with doing surgery and having the blood clot. Once agin Paul and I have a list of questions written down. Once again we will be praying and hoping for a good recovery.
Paul remains on the ventilator because he can not maintain enough oxygen on his own. He is alert and able to communicate via paper and a marker. He is sleeping better with more oxygen getting into his body. He also is keeping his sense of humor which makes me feel that he is still looking to the positive.
Since we will be here at least another week I am going to post the address so tht if any one wants to send a card, he will receive it here. I will also be getting our mail from home either sent here to the hospital or I will make a trip to pick it up. Thank you to those who already sent a card, it has made him feel good to look at them hanging on the wall.
Paul Hine 7 West ICU
C/O Keck Hospital
1500 San Pablo Street
Los Angeles CA 90033-5313
Until the next update....
Thank you
Hugs,
Jo and Paul too
Saturday morning update
Paul got through the bronchoscope without a problem. They took samples from each lung and will have it cultured to make sure they are treating it with the correct antibiotic.
Paul will remain on the ventilator through the weekend. They will not put him back into a drug induced coma, there is no need to do that at this time.
Right now this is all I know. I am waiting for his doctor to give me more updates.
Jo
Paul will remain on the ventilator through the weekend. They will not put him back into a drug induced coma, there is no need to do that at this time.
Right now this is all I know. I am waiting for his doctor to give me more updates.
Jo
Friday, June 28, 2013
One step back......
At about 5:30 this evening, Paul's breathing had become more labored and he felt that he was not getting any air. We let the respiratory technician know that Paul wanted an oxygen mask. Paul continued to take deep breaths but felt like he wasn't getting any relief. Within 30 minutes we had a bunch of doctors rushing in and out. They told us they thought the best thing was to do a quick bronchoscope to look at the trachea repair and put him on the ventilator. Paul agreed. His breathing had become extremely labored and he struggled to even say words.
It is 10:30 PM and Paul is back on the ventilator.
The doctors have said as far s they can tell, at the moment, it is not a blood clot in the lungs. There is fluid in the lungs and his white count is elevated. He is resting and not fighting the ventilator. They will keep him relaxed. I asked that they do not paralyze him again. The doctors said they would only do that if he becomes too agitated with the ventilator.
The doctors will do another bronchoscope in the morning. They did the one tonight just to make sure that the repair in the trachea was intact. It is. They will check deeper to look further inside the bronchioles
The ICU doctor and I talked at great lengths this evening before he left. He was outside this afternoon when we made our trip to enjoy the fresh air. He said it was so good to see Paul sitting with his legs crossed and smiling. He realizes how much Paul has struggled over the last two weeks. He and Paul actually talked the other night about about how far Paul had come since the second surgery and how determined Paul was to recovery enough to go home. He assured me that he will do whatever needs to be done to help Paul get better and back home.
Sitting and watching him..... Holding his hand.... Praying....
Jo
It is 10:30 PM and Paul is back on the ventilator.
The doctors have said as far s they can tell, at the moment, it is not a blood clot in the lungs. There is fluid in the lungs and his white count is elevated. He is resting and not fighting the ventilator. They will keep him relaxed. I asked that they do not paralyze him again. The doctors said they would only do that if he becomes too agitated with the ventilator.
The doctors will do another bronchoscope in the morning. They did the one tonight just to make sure that the repair in the trachea was intact. It is. They will check deeper to look further inside the bronchioles
The ICU doctor and I talked at great lengths this evening before he left. He was outside this afternoon when we made our trip to enjoy the fresh air. He said it was so good to see Paul sitting with his legs crossed and smiling. He realizes how much Paul has struggled over the last two weeks. He and Paul actually talked the other night about about how far Paul had come since the second surgery and how determined Paul was to recovery enough to go home. He assured me that he will do whatever needs to be done to help Paul get better and back home.
Sitting and watching him..... Holding his hand.... Praying....
Jo
Friday - June 28, 2013
Day 17 in ICU.
When I walked into Paul's room this morning his hert rate once again was raised. It was bouncing between 130 to 140. I continue to hope and pray that it will revert itself back to normal. I did talk with the ICU doctor, he said it is not that uncommon for someone's heart to act this way after major surgery, and Paul had two major surgeries. I guess this is a test of patience for me.
It was a very busy day for Paul. This morning at 9:00 AM, Speech Therapy came to assess his swallowing and to offer their input to his choking when he swallows. They would like Paul only to have water or ice and nothing else. The surgeon felt tht Paul could have a clear liquid diet. I guess they will have to get together and talk about the diet issues.
Paul continues with his Respiratory treatments every four hours. This treatment includes breathing with a nebulizer and also a good pounding on the chest and back. It is to loosen up any secretions that are in the lungs.
At 10:30 AM Physical Therapy came in to set a time to take Paul outside. 2:00 PM was set and became the goal of the day.
At 2:00 PM Occupational Therapy showed up and so did Physical Therapy. After they talked of who should be doing what and when... It was decided that Paul would get himself, with limited help, out of bed and use a walker to walk to the hallway to where the wheelchair awaited his escape to the sunshine and fresh air. This took care of both the physical and occupational aspects of both therapies. Paul enjoyed his 20 minutes outside. He enjoyed feeling the warm breeze on his face and did some exercises while sitting in the wheelchair.
At 3:30 PM the Ostomy therapist came by to help with the problem of his Ostomy bag leaking when he wants to drink. She and I worked together a bit with her ideas. She has created a set up that we will try as soon as his present bag starts to leak and needs to be changed. The Charge Nurse helped me with the last one so we are hoping it will last at least the rest of the day.
About 5:30 PM, Paul started having a hard time catching his breath. His oxygen level dropped and no matter how hard he tried, he could not get it back up. The nurse called the Respiratory Thearipist to give Paul extra oxygen. They also drew a Blood Gas to check his oxygen levels. Chest X-ray ordered and EKG. The ICU doc was in here immediately and so was the surgical on-call doc. I had thought about going to get a good night sleep in bed, but looks like I may be spending the night in his room. I hate to leave when he is having any kind of problem
It seems as through we take a couple of steps forward and then one step back.
I will update either late tonight or tomorrow.
Hugs to all our families and friends. Thank you all for being here, in spirit, with me.
Jo
When I walked into Paul's room this morning his hert rate once again was raised. It was bouncing between 130 to 140. I continue to hope and pray that it will revert itself back to normal. I did talk with the ICU doctor, he said it is not that uncommon for someone's heart to act this way after major surgery, and Paul had two major surgeries. I guess this is a test of patience for me.
It was a very busy day for Paul. This morning at 9:00 AM, Speech Therapy came to assess his swallowing and to offer their input to his choking when he swallows. They would like Paul only to have water or ice and nothing else. The surgeon felt tht Paul could have a clear liquid diet. I guess they will have to get together and talk about the diet issues.
Paul continues with his Respiratory treatments every four hours. This treatment includes breathing with a nebulizer and also a good pounding on the chest and back. It is to loosen up any secretions that are in the lungs.
At 10:30 AM Physical Therapy came in to set a time to take Paul outside. 2:00 PM was set and became the goal of the day.
At 2:00 PM Occupational Therapy showed up and so did Physical Therapy. After they talked of who should be doing what and when... It was decided that Paul would get himself, with limited help, out of bed and use a walker to walk to the hallway to where the wheelchair awaited his escape to the sunshine and fresh air. This took care of both the physical and occupational aspects of both therapies. Paul enjoyed his 20 minutes outside. He enjoyed feeling the warm breeze on his face and did some exercises while sitting in the wheelchair.
At 3:30 PM the Ostomy therapist came by to help with the problem of his Ostomy bag leaking when he wants to drink. She and I worked together a bit with her ideas. She has created a set up that we will try as soon as his present bag starts to leak and needs to be changed. The Charge Nurse helped me with the last one so we are hoping it will last at least the rest of the day.
About 5:30 PM, Paul started having a hard time catching his breath. His oxygen level dropped and no matter how hard he tried, he could not get it back up. The nurse called the Respiratory Thearipist to give Paul extra oxygen. They also drew a Blood Gas to check his oxygen levels. Chest X-ray ordered and EKG. The ICU doc was in here immediately and so was the surgical on-call doc. I had thought about going to get a good night sleep in bed, but looks like I may be spending the night in his room. I hate to leave when he is having any kind of problem
It seems as through we take a couple of steps forward and then one step back.
I will update either late tonight or tomorrow.
Hugs to all our families and friends. Thank you all for being here, in spirit, with me.
Jo
Thursday, June 27, 2013
Thursday June 27th, update
Paul is slowly gaining strength with each passing day. He continues to push himself one small step at a time. The surgeon had said he wanted Paul to push himself hard but not to exhaustion. Today Paul turned himself in bed and stood up from the bed, both all on his own. This is a major accomplishment and I am so proud of him! He is taking sips of tea and learning how to drink without choking himself too much. At the moment, most sips end up in coughing fits that leave him tired. Paul is now on a clear liquid diet. Broth, jello and tea. Not that food has any value except for the oral satisfaction of tasting it.
With the removal of Paul's esophagus and now having a stoma out the side of his neck we are struggling with the ostomy bag. The neck is not a flat surface which is complex as ostomy bags are made for a surface that does not bend all the time. It also seems to fill faster then we like and the weight of liquids pulls on it which breaks the seal. We are managing. Needless to say there are a lot of dirty towel and washcloths going to the laundry from this room. I am planning on sewing something up to help with this problem. As they say... Necessity is the mother of invention!
Paul's heart rate started to go up again in the early afternoon. They are treating it with medicines. I asked the doctor about this recurring problem and he thinks it will turn itself around. The ICU doctors feel that the trauma that Paul's body has been through is what is creating the rapid heartbeat. They believe that having two major surgeries back to back put a big strain on Paul It is not only the physical strain but the emotional aspects have his body in a flux that will take some time to heal. The doctor said it was like going through open heart surgery twice and throwing in abdominal surgery for good measure. So the best thing to do is let the body try to heal on it's own. No more avoidable stress for him. Now that his blood sugar is within normal range they are checking it every six hours instead of every hour, this is helping him to rest as he is not being disturbed hourly. His breathing continues to be rapid and shallow but he is working very hard on taking deeper and deeper breaths.
On a good note, Paul got to go outside today. He was put in a wheelchair and had everything transferred to a mobile monitor. He carried his drainage bags on his lap. It was actually a bit comical as all the nurses cheered when he left his room. They were just as excited for him to get out in the fresh air and sunshine as he was. Upon arriving outside, he took in a deep breath and basked in the sunshine. His eyes brightened and his smile lit up his entire face. I can only imagine what he must have been feeling after spending 16 days in the same ICU room. He asked the nurses to take him near the trees as he wanted to feel like he was part of nature. He beamed and I beamed right along with him. Afterwards he drink half of a green tea smoothie. We made a royal mess of things because the ostomy bag seal did not hold with the weight of the smoothie. Oh well, towels and gowns are washable!
Paul is receiving Physical Therapy to help him become more mobile. I am hoping that by Monday he will be able to walk on his own. He requested that someone help him with his swallowing and choking, so Speech Therapy will work with him tomorrow. Occupational Therapy will also be working with him to regain control of his everyday functions...brushing his teeth, combing his hair and shaving. He is still receiving Respiratory Therapy every four hours to clear his lung as they are still suffering the effects of surgery. With all of this plus the surgical team, the ICU team and the constant coming and going of the nurses, it no wonder he is tired and can not feel rested.
I was hoping that all his tubes would be out today but was told by the surgeon that he wants to make sure Paul's chest has no residual fluids that can cause an infection. So those will have to wait. For now I am happy that he can talk and smile, laugh and kid around with the nurses and tell me he loves me. It is so good to see his smile. I had missed that more then I could have imagined.
Time for sleep. Tomorrow will be another busy day of learning new things and taking the baby steps that will lead home.... after all, All roads lead somewhere and this road is going to lead us back home.
Thank for being part of our journey,
Jo and Paul
With the removal of Paul's esophagus and now having a stoma out the side of his neck we are struggling with the ostomy bag. The neck is not a flat surface which is complex as ostomy bags are made for a surface that does not bend all the time. It also seems to fill faster then we like and the weight of liquids pulls on it which breaks the seal. We are managing. Needless to say there are a lot of dirty towel and washcloths going to the laundry from this room. I am planning on sewing something up to help with this problem. As they say... Necessity is the mother of invention!
Paul's heart rate started to go up again in the early afternoon. They are treating it with medicines. I asked the doctor about this recurring problem and he thinks it will turn itself around. The ICU doctors feel that the trauma that Paul's body has been through is what is creating the rapid heartbeat. They believe that having two major surgeries back to back put a big strain on Paul It is not only the physical strain but the emotional aspects have his body in a flux that will take some time to heal. The doctor said it was like going through open heart surgery twice and throwing in abdominal surgery for good measure. So the best thing to do is let the body try to heal on it's own. No more avoidable stress for him. Now that his blood sugar is within normal range they are checking it every six hours instead of every hour, this is helping him to rest as he is not being disturbed hourly. His breathing continues to be rapid and shallow but he is working very hard on taking deeper and deeper breaths.
On a good note, Paul got to go outside today. He was put in a wheelchair and had everything transferred to a mobile monitor. He carried his drainage bags on his lap. It was actually a bit comical as all the nurses cheered when he left his room. They were just as excited for him to get out in the fresh air and sunshine as he was. Upon arriving outside, he took in a deep breath and basked in the sunshine. His eyes brightened and his smile lit up his entire face. I can only imagine what he must have been feeling after spending 16 days in the same ICU room. He asked the nurses to take him near the trees as he wanted to feel like he was part of nature. He beamed and I beamed right along with him. Afterwards he drink half of a green tea smoothie. We made a royal mess of things because the ostomy bag seal did not hold with the weight of the smoothie. Oh well, towels and gowns are washable!
Paul is receiving Physical Therapy to help him become more mobile. I am hoping that by Monday he will be able to walk on his own. He requested that someone help him with his swallowing and choking, so Speech Therapy will work with him tomorrow. Occupational Therapy will also be working with him to regain control of his everyday functions...brushing his teeth, combing his hair and shaving. He is still receiving Respiratory Therapy every four hours to clear his lung as they are still suffering the effects of surgery. With all of this plus the surgical team, the ICU team and the constant coming and going of the nurses, it no wonder he is tired and can not feel rested.
I was hoping that all his tubes would be out today but was told by the surgeon that he wants to make sure Paul's chest has no residual fluids that can cause an infection. So those will have to wait. For now I am happy that he can talk and smile, laugh and kid around with the nurses and tell me he loves me. It is so good to see his smile. I had missed that more then I could have imagined.
Time for sleep. Tomorrow will be another busy day of learning new things and taking the baby steps that will lead home.... after all, All roads lead somewhere and this road is going to lead us back home.
Thank for being part of our journey,
Jo and Paul
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