from freaked out to terrified

Daisylin
Daisylin Member Posts: 365
in Esophageal Cancer #1
Well, Lee posted this morning that he was headed back to the hospital. We were there all day and all evening. There was a lot of confusion, between residents, doctors, nurses and god only knows who else..... Long story short, once again, no room at the inn so to speak. They wanted to admit him back to palliative care but no beds available. So, one of the well meaning nurses told us that we'd probably be able to get discharged from ER to home, and they could call us when a bed became available. (like we did last time)

Unfortunately, the doctor knew nothing about this at all. So we waited all day, with the nurses having put his medication orders on hold until hearing from the doctor. the doctor they had seeing him was not even an ER doctor, but a doc from the team that inserted his stent, from the thoracic team. He vanished for about 5 hours. Of course when he finally came back, he said there is no way he'd want to discharge him. He was still vomiting black stuff and feeding tube site still leaking.

Long story short, Lee wanted to leave anyways, ER is just so loud, annoying and horrible. He was simply fed up, irritable and angry. The doctor, nurse and I managed to talk him into staying. (barely)

They want to do a scope to be certain, but they think that the stent is causing bleeding into the stomach. This is the worst possible news for us right now. I hope and pray that they are wrong, or that they can stop it somehow.

Please keep Lee in your prayers, thanks
Chantal

Comments

  • jss2011
    jss2011 Member Posts: 132
    #2
    This is nuts
    Chantal, our health care system is definitely broke, Lee deserves better care than this. I can just imagine his anger, he feels sick in the first place then have to deal with this BS.
    I have read people mentioning problems with the stent, I'm guessing this is one of them?
    Shouldn't the visiting nurse have known this right off?
    All I can do is pray they get it sorted and you get a bunch of good days in a row, it is way past your turn to catch a break!

    Hugs,
    Julie
  • NikiMo
    NikiMo Member Posts: 342
    #3
    Praying
    Chantal,

    Know that you and Lee are in my prayers. I feel a certain kinship towards you, being a young wife myself I know how scary this whole experience is. I know that this keeps you up at night or makes it near impossible to concentrate during the day. While Jeff did have the surgery and we are not going down the exact same path, I still can understand the fear you are having at this moment. There were definitely times while waiting for Jeff to come out of surgery that I certainly thought I would go mad from fear alone, I know how you are feeling. Hold tight to Lee's hand, as strange as it sounds, I pull strength from Jeff during the trying times. Just holding his hand sometimes can soothe my fears. I let him know how much he is loved and that I would always choose this life regardless of what we are going through. I truly believe in my wedding vows and pull strength from those as well...in sickness and in health, through good times and bad. You will get through this trying time together. I wish I could be there with you in the hospital right now to tell you that this will be ok. I will have to settle for a virtual "I am here for you, and this will be ok".

    Also it is ok to be a jerk right now, you can allow yourself to let the doctors and nurses know want you want RIGHT NOW! I often struggle with stepping up and voicing on Jeff's behalf, we are taught to be polite...sometimes polite doesn't work! I am validating for you that Lee should be getting the best care possibe, it is ok for you to insist that of the medical team. If someone disappears for five hours ask them where the hell they went!! I am kidding here a little bit, but just a little bit.

    Hugs,

    Niki
  • unclaw2002
    unclaw2002 Member Posts: 599
    #4
    Chantel,
    Hugs and prayers
    Chantel,

    Hugs and prayers are on their way to you and Lee. Words fail me as I read your post. I can't imagine how the two of you must be feeling right now. I hope you get some relief soon.

    Lots of love,
    Cindy
  • TerryV
    TerryV Member Posts: 887
    #5
    Lee needs a bed, period
    Palliative care or regular care - Lee needs a durn hospital bed! Surely they wouldn't just leave you waiting if a regular bed were open, or would they? I hope not, but really can't be sure at this point. You've been yanked around a good bit.

    I'm so sorry for the hassle that you have had to tolerate to obtain urgent medical care. That's not how it's supposed to be.

    Hoping and praying that Lee gets the necessary care quickly and that you get some relief from fear/worry/anxiety.

    Your online family cares deeply about you both! We are here for you, Chantal. Let your frustations out on us.

    Terry
  • chemosmoker
    chemosmoker Member Posts: 501
    #6
    Waiting and hoping for better days ahead!!
    Chantal and Lee,
    I am so sorry that you have had to spend the entire day wasted there, but I am still glad that you did get him to the hospital and he was at least in a place to be taken care of if it had turned into something horrible. Too bad they wasted the time for you two.

    As for the brown/black liquid he has been vomiting, I am pretty sure that is going to turn out to be bile, and that is not good. I do not think it is coming from his stint or is because of his stint. That would be bloody and red and not brown and like what you have been describing. I am not a doctor though. And I worry about a bowel perforation OR a esophageal perforation too from the vomiting.

    I know it is so easy to suspect the stint with all the horror stories about stints and all.

    I believe you will be finding out that this is bile that has backed up into his stomach as it has no where to go but back up. That's my bet. We will find out soon. Just guessing til then.

    Of course Lee AND you are in our prayers and we will be anxiously awaiting your next post. You two have done an amazing job keeping us all updated and posting tons and it's nice to not feel so out of touch. I am again glad that he got to the hospital finally, just sucks that the system there sounds like ALL of the warnings we are getting if we go with a government run system; no beds, long waits, crap service. William made us all aware.
    I digress....

    Please tell Lee we are ALL pulling for him and I hope you two make it though the night okay.

    We love you and you know you have all of our support. ALL of it.

    With TONS of love,
    Eric

    PS- You deserve a BIG break after this. I sue hope you finally get that.
  • jojoshort
    jojoshort Member Posts: 230 Member
    #7
    Chantal and Lee
    We here on the board are with you in spirit as you deal with yet another complication. I am so sorry for your troubles and wish you a resolution to this problem and some rest for you both.

    Yes, do insist that they not put your Lee on the backburner. You and he deserve answers to this emergency.

    Keeping you both close in my heart as I go about my day today,
    Jo-Ann
  • sangora
    sangora Member Posts: 213
    #8
    jojoshort said:

    Chantal and Lee
    We here on the board are with you in spirit as you deal with yet another complication. I am so sorry for your troubles and wish you a resolution to this problem and some rest for you both.

    Yes, do insist that they not put your Lee on the backburner. You and he deserve answers to this emergency.

    Keeping you both close in my heart as I go about my day today,
    Jo-Ann

    Glad you posted
    I know that you are stretched thin but thanks for bringing us up to date on this unfortunate situation. Tell Lee we are all pulling for him and though it is hard, be patient. The doctors can do a better job if he is with them instead of home. Keeping you both in my prayers. Sam
  • chrissiebass
    chrissiebass Member Posts: 56
    #9
    sangora said:

    Glad you posted
    I know that you are stretched thin but thanks for bringing us up to date on this unfortunate situation. Tell Lee we are all pulling for him and though it is hard, be patient. The doctors can do a better job if he is with them instead of home. Keeping you both in my prayers. Sam

    praying for you both
    Chantal and Lee,

    you really have been on the "roller coaster from hell" lately!! Keeping you both in my thoughts and prayers. I wish we could change the health care system for you both!! Please keep updating, and know many are thinking about you BOTH!!!
  • Wife of patient 50378
    Wife of patient 50378 Member Posts: 124
    #10
    Chantal & Lee
    Chantel & Lee in London,
    Praying for you.....hope they have resolved Lee's immediate issues.
    Your in my thoughts!
    Sal
  • mrsbotch
    mrsbotch Member Posts: 349
    #11
    What next
    You guys have been thru the wringer. I feel terrible for both of you. Yes the Health care system seems broke in both Canada and America. We are at their mercy.

    Please hug Lee and yourself for me.


    Much love

    Barbara
  • Daisylin
    Daisylin Member Posts: 365
    #12
    mrsbotch said:

    What next
    You guys have been thru the wringer. I feel terrible for both of you. Yes the Health care system seems broke in both Canada and America. We are at their mercy.

    Please hug Lee and yourself for me.


    Much love

    Barbara

    partial update..
    Lee spent part of Tuesday night in the ER, and they finally found a bed for him on the oncology floor. They brought him for his endoscopy yesterday morning. They found lots of blood in his stomach, and she pumped out a litre of it. She also put an NG tube in to drain any other blood that may be accumulating.

    She said that the stent was still perfectly placed, HOWEVER, the problem is that his blood has become very very thin, and the tiny little cuts which are usual for such a procedure are just not clotting the way they should. there is also a spot entering the stomach where the stent is rubbing on the wall of his stomach, causing an ulcer.

    What she has decided to do, is to give him blood transfusions, in hopes of thickening the blood enough to clot these tiny cuts. Also he's on some antibiotics, and I'm not really sure what else, but he's got about 7 iv bags hanging on the pole. She said that she could remove the stent, but with the thin blood, he does not want to risk creating any more cuts. So, the stent is still in, and she's going to play it by ear. If the transfusions thicken his blood, she may take it out, even thought the placement is perfect.

    Lee was pretty out of it last night, making no sense, and trying to pick a fight with me. I know it's just the drugs, but oh man, God give me strength. I guess from today, we're going to see how much blood has drained, and if it's stopped, then we go from there. I have no idea what the plan of action is if it hasn't stopped......

    Thanks for the ears
    Chantal
  • Unknown
    Unknown
    #13
    Daisylin said:

    partial update..
    Lee spent part of Tuesday night in the ER, and they finally found a bed for him on the oncology floor. They brought him for his endoscopy yesterday morning. They found lots of blood in his stomach, and she pumped out a litre of it. She also put an NG tube in to drain any other blood that may be accumulating.

    She said that the stent was still perfectly placed, HOWEVER, the problem is that his blood has become very very thin, and the tiny little cuts which are usual for such a procedure are just not clotting the way they should. there is also a spot entering the stomach where the stent is rubbing on the wall of his stomach, causing an ulcer.

    What she has decided to do, is to give him blood transfusions, in hopes of thickening the blood enough to clot these tiny cuts. Also he's on some antibiotics, and I'm not really sure what else, but he's got about 7 iv bags hanging on the pole. She said that she could remove the stent, but with the thin blood, he does not want to risk creating any more cuts. So, the stent is still in, and she's going to play it by ear. If the transfusions thicken his blood, she may take it out, even thought the placement is perfect.

    Lee was pretty out of it last night, making no sense, and trying to pick a fight with me. I know it's just the drugs, but oh man, God give me strength. I guess from today, we're going to see how much blood has drained, and if it's stopped, then we go from there. I have no idea what the plan of action is if it hasn't stopped......

    Thanks for the ears
    Chantal

    This comment has been removed by the Moderator
  • TerryV
    TerryV Member Posts: 887
    #14
    Daisylin said:

    partial update..
    Lee spent part of Tuesday night in the ER, and they finally found a bed for him on the oncology floor. They brought him for his endoscopy yesterday morning. They found lots of blood in his stomach, and she pumped out a litre of it. She also put an NG tube in to drain any other blood that may be accumulating.

    She said that the stent was still perfectly placed, HOWEVER, the problem is that his blood has become very very thin, and the tiny little cuts which are usual for such a procedure are just not clotting the way they should. there is also a spot entering the stomach where the stent is rubbing on the wall of his stomach, causing an ulcer.

    What she has decided to do, is to give him blood transfusions, in hopes of thickening the blood enough to clot these tiny cuts. Also he's on some antibiotics, and I'm not really sure what else, but he's got about 7 iv bags hanging on the pole. She said that she could remove the stent, but with the thin blood, he does not want to risk creating any more cuts. So, the stent is still in, and she's going to play it by ear. If the transfusions thicken his blood, she may take it out, even thought the placement is perfect.

    Lee was pretty out of it last night, making no sense, and trying to pick a fight with me. I know it's just the drugs, but oh man, God give me strength. I guess from today, we're going to see how much blood has drained, and if it's stopped, then we go from there. I have no idea what the plan of action is if it hasn't stopped......

    Thanks for the ears
    Chantal

    We are with you in spirit, Chantal!
    I wish we were able to be there, to give you a hug, to hold your hand, to wipe your tears, to listen to your anger and frustration. Know that we are here for you though.

    We love you both and are concerned. Praying for a quick resolution to Lee's pain and bleeding and your emotional agony.

    Sending the biggest, tightest virtual bear hug possible,

    Terry
  • cher76
    cher76 Member Posts: 292
    #15
    Daisylin said:

    partial update..
    Lee spent part of Tuesday night in the ER, and they finally found a bed for him on the oncology floor. They brought him for his endoscopy yesterday morning. They found lots of blood in his stomach, and she pumped out a litre of it. She also put an NG tube in to drain any other blood that may be accumulating.

    She said that the stent was still perfectly placed, HOWEVER, the problem is that his blood has become very very thin, and the tiny little cuts which are usual for such a procedure are just not clotting the way they should. there is also a spot entering the stomach where the stent is rubbing on the wall of his stomach, causing an ulcer.

    What she has decided to do, is to give him blood transfusions, in hopes of thickening the blood enough to clot these tiny cuts. Also he's on some antibiotics, and I'm not really sure what else, but he's got about 7 iv bags hanging on the pole. She said that she could remove the stent, but with the thin blood, he does not want to risk creating any more cuts. So, the stent is still in, and she's going to play it by ear. If the transfusions thicken his blood, she may take it out, even thought the placement is perfect.

    Lee was pretty out of it last night, making no sense, and trying to pick a fight with me. I know it's just the drugs, but oh man, God give me strength. I guess from today, we're going to see how much blood has drained, and if it's stopped, then we go from there. I have no idea what the plan of action is if it hasn't stopped......

    Thanks for the ears
    Chantal

    Hope things go well today!
    Chantal,
    I have been thinking of you both and praying that Lee gets so good results with the transfusions. I understand how hard this is. My heart is breaking for both of us.
    Cheryl
  • jax568
    jax568 Member Posts: 57
    #16
    cher76 said:

    Hope things go well today!
    Chantal,
    I have been thinking of you both and praying that Lee gets so good results with the transfusions. I understand how hard this is. My heart is breaking for both of us.
    Cheryl

    Praying for a better day
    You and Lee are in my thoughts.
  • jss2011
    jss2011 Member Posts: 132
    #17
    jax568 said:

    Praying for a better day
    You and Lee are in my thoughts.

    Strength
    Chantal,
    You have the strength you need, just wish you didn't need to have it on a daily basis.
    Continued prayers for you both.

    Julie
  • chemosmoker
    chemosmoker Member Posts: 501
    #18
    Daisylin said:

    partial update..
    Lee spent part of Tuesday night in the ER, and they finally found a bed for him on the oncology floor. They brought him for his endoscopy yesterday morning. They found lots of blood in his stomach, and she pumped out a litre of it. She also put an NG tube in to drain any other blood that may be accumulating.

    She said that the stent was still perfectly placed, HOWEVER, the problem is that his blood has become very very thin, and the tiny little cuts which are usual for such a procedure are just not clotting the way they should. there is also a spot entering the stomach where the stent is rubbing on the wall of his stomach, causing an ulcer.

    What she has decided to do, is to give him blood transfusions, in hopes of thickening the blood enough to clot these tiny cuts. Also he's on some antibiotics, and I'm not really sure what else, but he's got about 7 iv bags hanging on the pole. She said that she could remove the stent, but with the thin blood, he does not want to risk creating any more cuts. So, the stent is still in, and she's going to play it by ear. If the transfusions thicken his blood, she may take it out, even thought the placement is perfect.

    Lee was pretty out of it last night, making no sense, and trying to pick a fight with me. I know it's just the drugs, but oh man, God give me strength. I guess from today, we're going to see how much blood has drained, and if it's stopped, then we go from there. I have no idea what the plan of action is if it hasn't stopped......

    Thanks for the ears
    Chantal

    We are here for you. We love you .
    Chantal,

    SO sorry you are STILL having to worry so damn much instead of being home eating more chef-boy-r-Dee which had been my sincere hope for you two.

    I am here if you need an ear or to scream, as is Michelle.
    DON'T Hesitate to call us please!

    I sure hope LEE wasn't taking any of those Ibuprofen or Advil or Aspirin; he WAS last I spoke to him a few weeks ago. I tried to put the scare in him--that those are BLOOD THINNERS--and will lead to bleeding. I am sure he wasn't, right?

    Not to sound mean I am just wondering and worried for him. He is my 'best friend' in this fight and I want, and need, him here to continue the fight WITH me, as I know you do too.

    You two are two of my favorite people and I want to hear some good news soon, as I KNOW you NEED to!!! I will pray and pray and pray that you get some, SOON!!

    Hang in there and breathe as best you can. Please, YOU must rest your mind soul and body too. You have had SO very much on you for the last few months. I don't want your needs discounted even though we are all worried about Lee, of course.

    Seven IV bags, WOW! Sounds like they got him under control, and I am SO SO SO glad that you can SEE RIGHT THROUGH his anger, and that it is NOT directed at you, but just misplaced (and VERY justified frustration) anger from all these damn complications. He has had his share. YOU have too. I wish for you a BREAK, and a time at home, soon.

    At least he is in a good place should any more complications arise, and you don't have to taken them on alone. We just want you two back home-soon.

    I am glad the stint is perfectly placed, just wish it wasn't rubbing his stomach. Maybe that will be okay, as she said, after his blood thickens. I have heard great things about transfusions. They were going to give me some early on, as I was SO Anemic, and couldn't get enough Iron in me to catch up. Didn't get there, but I know they can do AMAZING things with those. They DO work.

    I love you both. I am waiting for the GOOD news. YOU DESERVE SOME SOON!

    ERIC
  • ritawaite13
    ritawaite13 Member Posts: 236
    #19
    Daisylin said:

    partial update..
    Lee spent part of Tuesday night in the ER, and they finally found a bed for him on the oncology floor. They brought him for his endoscopy yesterday morning. They found lots of blood in his stomach, and she pumped out a litre of it. She also put an NG tube in to drain any other blood that may be accumulating.

    She said that the stent was still perfectly placed, HOWEVER, the problem is that his blood has become very very thin, and the tiny little cuts which are usual for such a procedure are just not clotting the way they should. there is also a spot entering the stomach where the stent is rubbing on the wall of his stomach, causing an ulcer.

    What she has decided to do, is to give him blood transfusions, in hopes of thickening the blood enough to clot these tiny cuts. Also he's on some antibiotics, and I'm not really sure what else, but he's got about 7 iv bags hanging on the pole. She said that she could remove the stent, but with the thin blood, he does not want to risk creating any more cuts. So, the stent is still in, and she's going to play it by ear. If the transfusions thicken his blood, she may take it out, even thought the placement is perfect.

    Lee was pretty out of it last night, making no sense, and trying to pick a fight with me. I know it's just the drugs, but oh man, God give me strength. I guess from today, we're going to see how much blood has drained, and if it's stopped, then we go from there. I have no idea what the plan of action is if it hasn't stopped......

    Thanks for the ears
    Chantal

    Happy for answers
    Chantal,
    I'm glad you have some answers on the vomiting. Now if the docs could just get their sh** together and get it taken care of we could all breathe a little easier. I will pray that the transfusions go well and make a huge difference. The anger Lee is expressing is at the cancer - not at you. I went through that too and it's tough to listen to after you've busted your butt being a caregiver. Just know Lee loves you more than life itself. Hang in there Chantal. Michelle was right, you never know how strong you are until strong is the only choice you have.
    Hugs to you,
    Rita
  • mardigras
    mardigras Member Posts: 215 Member
    #20
    Daisylin said:

    partial update..
    Lee spent part of Tuesday night in the ER, and they finally found a bed for him on the oncology floor. They brought him for his endoscopy yesterday morning. They found lots of blood in his stomach, and she pumped out a litre of it. She also put an NG tube in to drain any other blood that may be accumulating.

    She said that the stent was still perfectly placed, HOWEVER, the problem is that his blood has become very very thin, and the tiny little cuts which are usual for such a procedure are just not clotting the way they should. there is also a spot entering the stomach where the stent is rubbing on the wall of his stomach, causing an ulcer.

    What she has decided to do, is to give him blood transfusions, in hopes of thickening the blood enough to clot these tiny cuts. Also he's on some antibiotics, and I'm not really sure what else, but he's got about 7 iv bags hanging on the pole. She said that she could remove the stent, but with the thin blood, he does not want to risk creating any more cuts. So, the stent is still in, and she's going to play it by ear. If the transfusions thicken his blood, she may take it out, even thought the placement is perfect.

    Lee was pretty out of it last night, making no sense, and trying to pick a fight with me. I know it's just the drugs, but oh man, God give me strength. I guess from today, we're going to see how much blood has drained, and if it's stopped, then we go from there. I have no idea what the plan of action is if it hasn't stopped......

    Thanks for the ears
    Chantal

    Praying for you both
    I'm so very sorry that you are going through this. I don't know what to say except that I am thinking of you both and praying things will get better for you soon.
    You really do deserve a break.
    Love and hugs
    Marci x

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