Post Ivor-Lewis

AKRN2013

So, post-chemo/radiation PET showed no sign of cancer. Dad had the Ivor-Lewis Procedure yesterday.  9 hour surgery.  Today he has had fevers (up to 104.7) And muscle spasms above the level of his epideral.  We are taking things one step at a time.  

Dad'sfight

How's dad doing?  Have been

How's dad doing?  Have been praying for him

AKRN2013

Update

It has been a rough road.  Dad had the Ivor-Lewis on 7/12. had fever overnight. No urine after surgery and increased respiratory distress.  Went into renal failure.  Returned to OR on 7/14 for anastomoses leak.  Returned to ICU intubated, bilateral chest tubes and a dialysis catheter. He went into sepsis with very unstable blood pressure and several different medications to support his heart and blood pressure.   Luckily his kidneys started working again so they removed the catheter the next day.  Started feeds on 7/15 only to discover he has a chyle leak.    Feeds stopped and TPN (IV nutrition) was started.  The hope was to allow the chyle leak to heal on its own.  Yesterday they attempted to remove the breathing tube but he is so sedated and has so many secretions that they needed to reintubate 45 minutes later.  Today we met with surgeon who wants to go back to OR to repair the chyle leak and to place a trach.  Hopefully this will be short term  to help him wean off of the ventilator.  Every day he is in that bed ventilated and sedated is weeks worth of physical rehab.  

We find ourselves wondering if we made the right choice with the surgery.  The post chemo/radiation PET showed NED.  We went ahead with the surgery to give him the best chance of beating this horrible cancer and now he may not survive the surgery or of he does he will have a very long recover... When you consider the rate of recurrence regardless of surgery we can't help but wonder of we shouldn't have stopped while we were ahead.

Despite everything going on on our end I have been reading updates on the board here and there and I'm sorry to hear about your father. I have included you all in my prayers.  I have also found myself wondering about  Larry.  Anyone heard anything from Linda?

 

 

 

AKRN2013

Dad'sfight said:

How's dad doing?  Have been

How's dad doing?  Have been praying for him

More..

We have also had multiple issues with errors and poor nursing.  As a nurse I am very protective of my profession but I have been very disappointed with the quality of nursing we have relieved from some of the nurses.  First lost post op the surgeon came in and discovered the nurse had plugged tor intake on the NG (the pressure build upay have caused the initial leak). After the chyle leak was discovered the nurse did not turn of the feeds for 2 hours and only did after I raised hell about it being on.  Several times we have had to ask nurses to remove plugs from the intake valve.  two days ago dad started waking and thrashing in bed. I looked over and realized that someone had turned his sedation off completely.  She argued with me that it wasn't off but refused to get off her but to look. When I demanded she check her pump  she realiEd it was off and actually laughed about it.  I don't think mdad as waking from sedation thrashing in pain And confusion funny.  We fired the nurse. 

Yesterday the nurse set up he chest tube clearing wrong Which could have caused huge complications weren't that that way for 8 hours before the surgeon noticed.  

 

I have not been able to leave his bedside for fear that they are going to kill my dad! i am exhausted.  It is really not fair that I have to be a nurse and a daughter while my father is critically ill. I'm am just completely drained.  

Dad'sfight

AKRN2013 said:

Update

It has been a rough road.  Dad had the Ivor-Lewis on 7/12. had fever overnight. No urine after surgery and increased respiratory distress.  Went into renal failure.  Returned to OR on 7/14 for anastomoses leak.  Returned to ICU intubated, bilateral chest tubes and a dialysis catheter. He went into sepsis with very unstable blood pressure and several different medications to support his heart and blood pressure.   Luckily his kidneys started working again so they removed the catheter the next day.  Started feeds on 7/15 only to discover he has a chyle leak.    Feeds stopped and TPN (IV nutrition) was started.  The hope was to allow the chyle leak to heal on its own.  Yesterday they attempted to remove the breathing tube but he is so sedated and has so many secretions that they needed to reintubate 45 minutes later.  Today we met with surgeon who wants to go back to OR to repair the chyle leak and to place a trach.  Hopefully this will be short term  to help him wean off of the ventilator.  Every day he is in that bed ventilated and sedated is weeks worth of physical rehab.  

We find ourselves wondering if we made the right choice with the surgery.  The post chemo/radiation PET showed NED.  We went ahead with the surgery to give him the best chance of beating this horrible cancer and now he may not survive the surgery or of he does he will have a very long recover... When you consider the rate of recurrence regardless of surgery we can't help but wonder of we shouldn't have stopped while we were ahead.

Despite everything going on on our end I have been reading updates on the board here and there and I'm sorry to hear about your father. I have included you all in my prayers.  I have also found myself wondering about  Larry.  Anyone heard anything from Linda?

 

 

 

Sorry to hear all this. I
Sorry to hear all this. I know exactly how you feel. Our surgeon was great, surgery went well but the nursing staff was horrible. My father couldnt breath on his own for 3 days, they tried to take him off each day and then would have to jam the ventalator back down. They need to get hid pain under control before removing it or your father will kerp aspirating. My dad had a epidutal placed for pain. It was touch and go, i was a wreck. They came to us on day 3 and said he eould probably need trach, temporary. Luckily he pulled through. However, he struggled with mucos blocking alungs so they immediatly started breathing treatmrnts to break it up so that he could cough it out. It caused so much pain when coughing. It was bizzarre, yhey would beat on his back with a cup and administer breathing treatments at the same time. It helped though, slowly. I was so scared when they had him sedated with vent. I eould go in and hold his hand and he would panic and sqeeze my hand. The vent was hid greatest fear and it happened out of my control. I actually chewed a nurse, resident, an anesthia doc in the hallway because they were disregarding his pain and trying to get him off. They called security which i didnt care. I demanded the surgeon be notified pronto of their poor judement and that i wanted him on the floor when it was attempted with completely different staff. I demanded the trauma docs remove it, i figired they were more experienced with it. I was right. I couldnt thank the surgeon enough for listening and having my back. I nevrr left his side, i just dont think nurses understood the surgery and risks for misyakes. Hang in there, i know your second questioning everything, but he chose the surgery for best chance of survival. I noe look back and think what all dad has been through and now we ate looking at 4-8 months. It was a gamble, just didnt eork out for us. I pray that it does for him. You all will be in our continued prayers. Havent seen a post aboit Larry, i was going to message her.

RKMikulski

Dad'sfight said:

Sorry to hear all this. I
Sorry to hear all this. I know exactly how you feel. Our surgeon was great, surgery went well but the nursing staff was horrible. My father couldnt breath on his own for 3 days, they tried to take him off each day and then would have to jam the ventalator back down. They need to get hid pain under control before removing it or your father will kerp aspirating. My dad had a epidutal placed for pain. It was touch and go, i was a wreck. They came to us on day 3 and said he eould probably need trach, temporary. Luckily he pulled through. However, he struggled with mucos blocking alungs so they immediatly started breathing treatmrnts to break it up so that he could cough it out. It caused so much pain when coughing. It was bizzarre, yhey would beat on his back with a cup and administer breathing treatments at the same time. It helped though, slowly. I was so scared when they had him sedated with vent. I eould go in and hold his hand and he would panic and sqeeze my hand. The vent was hid greatest fear and it happened out of my control. I actually chewed a nurse, resident, an anesthia doc in the hallway because they were disregarding his pain and trying to get him off. They called security which i didnt care. I demanded the surgeon be notified pronto of their poor judement and that i wanted him on the floor when it was attempted with completely different staff. I demanded the trauma docs remove it, i figired they were more experienced with it. I was right. I couldnt thank the surgeon enough for listening and having my back. I nevrr left his side, i just dont think nurses understood the surgery and risks for misyakes. Hang in there, i know your second questioning everything, but he chose the surgery for best chance of survival. I noe look back and think what all dad has been through and now we ate looking at 4-8 months. It was a gamble, just didnt eork out for us. I pray that it does for him. You all will be in our continued prayers. Havent seen a post aboit Larry, i was going to message her.

I am sorry you are having

I am sorry you are having these problems, but it does bring back memories.  My husbands surgeon was awesome, nurses sucked, I ended up reporting most of them.  Everytime someone walked in the room I had to inform them he had a chest tube.  I cannot count how many times the nurses nearly pulled out his chest tube, or tripped over it.  it would than take 4 hours to get his pain back under control.  I finally got to the point where I had to become a raving **** to make sure my husband received the proper care.