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John Recovery Upddate!

Ericalynn's picture
Ericalynn
Posts: 207
Joined: Jun 2011

John was discharged from hospital little over one week ago. He continued to have pain in his right side (the area where chest tube was). He really has not moved too much in the week he has been home. I thought it was because the pain medication was not as strong (IV vs. oral). I encouraged him to walk and move (he not to happy with me). Yesterday (Saturday) I asked him if he wanted to get out of house he said he would go with me. We went to Sam’s Club he pushed cart around we picked up a few things and we went to our favorite beach restaurant (Best Gropper Sandwiches). When we got home he asked me to look at the incision on his right side. The steri- strips had fallen off the incision was opened a little and it was oozing. He coughed and it really started coming out ( gross). I put gauze over night when, I removed bandage today it started again. I called the hospital and the on call resident told us it was probably OK. John did not feel good and did not want to spend the rest of the day worried so we went to hospital. The resident opened incision with scalpel ( no anesthetic ) and drained the wound. They did a chest x-ray and wrote a script for antibiotic. John took one antibiotic and he said it gave him diarrhea, don’t know if he was just upset about infection or it did but I called and the resident changed the antibiotic. John has been in bed all afternoon he does not want to eat and he is getting annoyed when I insist (when he is awake ) to at least drink something. He was very upset this afternoon about the infection. I think with the medication he will be fine but he has been through so much. I feel bad for him but I just don’t know what to do for him. He has not been eating as much as he was the first few days after discharge. He is very lethargic today and I am worried. I am hopping that the antibiotics will kick in and the wound will start to heal and that this will be the only bump in the road, but the EC road has many bumps and a few potholes so I do not know what tomorrow brings but I’ll keep you posted! Thanks for listening my friends
Erica

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

Erica,

I'm sure the infection is contributing to John's lethargicness. I do recall week two and three after being discharged was very hard on my husband. He ended up having his esophagus stretched as the scar tissue heals it gets smaller and eating became more difficult. So he went from eating most everything but bread and meat to soft food, then smoothies then clear liquids before we learned about the stretching. It made a world of difference. He ended up having three stretches done about a month or two apart before the circular scar stayed open enough for him to eat "normally".

Hope all is better with John tomorrow.

Take Care of yourself too!

Ericalynn's picture
Ericalynn
Posts: 207
Joined: Jun 2011

Birdiequeen,ing
Thank you for posting, I know that I read about people needing a stretch after surgery ( but I forgot) he does not seem to have an issue swallowing (yet) he just lost his appetite. I think he gets himself worked up and he cannot seem to talk about how he is feeling or what he is going through, if I ask him about his feelings he gets upset. Right now I am just guessing about a lot of what John is feeling. Thank goodness I have this site with everyone’s input and experience I always feel a little bit better when I can see that someone else all ready went through the same thing. Thank you so much for the support!
Erica

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

I took the weekend "off" and didn't touch the computer.

Nick also has had pain in his left chest - where the drain was. He also feels a bit of "gurgling" in that lung. The pain is a bit phantom - it seems to come and go, but when he 1st had this at hospital, antiboitics cleared it right up.

We are about to rerequest antibiotics as he's experiencing this again. Not sure if this happens to John or not, but Nick has noticed that the pain is more noticable when he breathes shallow - sleeping, at rest, etc. Not as noticable when he's walking or exerting himself somehow.

Hope this helps!

Terry

BMGky
Posts: 666
Joined: May 2010

Sorry about the infection. My husband had the Ivor Lewis and developed, while in hospital, an infection in his stomach area incision. A young surgical resident noticed it. (My husband was in the hospital 30 days). The infection in the incision was noticed about two weeks after the surgery. They had the nurses and then me when he was discharged use some gauze strips that were moist and came from a sterile jar to place over the opened incision and then bandage it. The incision healed shortly upon return to home.

Bill was very weak upon return to home and had lots of lung pain. Appetite issues, nausea issues, diarrhea issues, pain issues. As soon as possible, we reduced his narcotic type pain meds to pain patches and used Tylenol. Keeping his head clear seemed to help him deal with the pain. At times, though, his pain was so great he had to have the narcotic type medicine.

He was frequently discouraged as he felt so bad but surely and slowly, he began to improve. It took some 6 to 7 months for him to feel like he was returning to normal.

Hang in there!!

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

Erica,
The trauma to the body is huge, and remember, it is ALWAYS darkest before the dawn...there's a reason that saying exists.
I will continue to pray for you two. I have not had any experience with what he is going through, though I have been through surgeries and hospitalizations and infections.
I do know that I have done well right after release, and then taken a downturn and then gotten better. Maybe it's just the way our bodies work. I am no doctor, but I DO know that when his immune system is working overtime to heal and recover from all that his body has been through, he will not have energy for much else, like movement or laughter...He can't. His body will do whatever it has to to store and use the strength he DOES have to recover and heal the scars. The trip to Sam's Club sounds like a LOT! I find that very encouraging.

Hang in there! He is on the other side. Nothing can be as bad as it WAS again!
God bless you for being so strong and sharing. I am sure you must be terrified.
We are all here for you, you know that.
Keep us posted.

-Eric

jss2011
Posts: 137
Joined: Sep 2011

Hi Erica,
Sure hope John is feeling better today. Do what you can for him, or what he will allow,
and remember to take care of yourself. You have both been through alot.

Hugs,
Julie

jss2011
Posts: 137
Joined: Sep 2011

Hi Erica,
Sure hope John is feeling better today. Do what you can for him, or what he will allow,
and remember to take care of yourself. You have both been through alot.

Hugs,
Julie

Ericalynn's picture
Ericalynn
Posts: 207
Joined: Jun 2011

I am waiting for the Doctor ( nurse) to call back. John has had a banana and one bite of toast today. Very little water and he is getting very weak. I guess I was too optimistic when he first got home. I thought we were on the up swing looks like this is a bigger set back than I first thought. I don’t know if I should try to put him in the car and drive him to hospital (it is over an hour away) or wait for the call back.
Thanks for the support everyone I hope that I will be able to support all of you the way you have helped me!
Erica

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

While you are waiting for the call back, Erica....are you able to get some Boost, Ensure or Muscle Milk in him? A quick "pick me up"....

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

Might I suggest you take your cell phone and drive him to the hospital while you are waiting on the Dr. to call. If he will go and you are very worried, go. If the Dr. office only has your home number, forward your home number to your cell or call the office and have them update your phone number. At very least it sounds like he may need to be hydrated.

hopper52's picture
hopper52
Posts: 117
Joined: Apr 2011

Sorry to hear about John's latest setbacks. I remember Dr Meredith saying leakage and infection are fairly common complications.......but remember, these are treatable conditions. Focus on the good things that have happened....he got the surgery and by God's grace the cancer won't return. He was able to have a Grouper Sandwich.........I'm not there yet but in a few days, watch out......plus the Bucs won......which proves miracles do happen.

In any case, hang in there. I'm continuing to pray for the both of you.

Michael Daniels
Brandon, FL

bingbing2009
Posts: 179
Joined: Feb 2011

Erica, I know this is a rough time for you, but I really believe things will get better.
I was one sick lady after my Ivor Lewis surgery. I developed an infection in my belly incision that was quite nasty. I had lots of issues after I got home, including vomiting pretty much everything I ate. As a matter of fact, peanut butter was about the only thing I could eat and keep on my new stomach. Mentally, I was a mess. It was difficult for me to walk because I had so much pain as well as breathing issues. My husband thought I would be an invalid for life--that's how bad I was. Anyway, bottom line, it took me a few months, but gradually things really did improve. I'm doing great now. To look at me now, you would never believe the horrible mess I once was.
I'll keep you in my thoughts and prayers and hope for a speedy recovery for John.
Hang in there!
Melinda

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Erica, After my Ivor Lewis surgery in May 2008, I could eat very little. My husband insisted I take my medicines with swallows of Insure, hoping to give me a little energy. I would only eat a couple bites at a time. Of course this caused extreme weakness. I took motrin for pain after I left the hospital and I did good with only that for pain. I can't stand narcotic pain killers--I get very nauseous, even with anti nausea medicine. I did get my appetite back, but I kept losing weight ( 99 pds) The doctors couldn't figure out why and decided it was a change in metablizm.Over the last year, I've gained back 10 pds ( Yaaaa!
Stretching was mentioned. This is an ongoing problem for me. I've had several stretches and will need another soon. I saw my gastrologist last thurs.He asked if I wanted to go ahead and do another,but I am not going to, until I have to start grating my food again. In the meantime I have to eat slow small bites and concetrate on every bite. The doctor said I will probably need a stretch a couple times a year. The only other alternative would be surgery and that isn't going to happen unless it's a have to. I have an appointment for a barium swallow wed. and then with my surgeon. I'm going to talk to him and see if his opinion is the same.
Regaining strength is difficult.Of course eating is the main thing and also exercise. The exercise was the key that helped me physically and mentally.
Keep us posted on John's recovery. He's been through a lot and I will be praying for better days ahead.
Sandra

Cora11's picture
Cora11
Posts: 177
Joined: Sep 2011

Erica, please know that John and you are in my thoughts and prayers. I am hoping that even as I post this he is feeling better and that you have some answers to what is going on with him.
With concern and hope,
Cora

Ericalynn's picture
Ericalynn
Posts: 207
Joined: Jun 2011

The infection at the chest tube site was worse than I thought it was. I think it really wiped John out. The nurse thinks the diarrhea and nausea is from the antibiotics. The nurse told me I could but Gatorade in the feeding tube(who knew) I can only give him 50cc per 1 to 1 1/2 hours but it is better than nothing. The doctor told nurse to start John on feeding tube. He also ordered an anti nausea drug and the nurse told me to give him Imodium. John took the medication around 5 PM and went to bed, when he got up from his nap he said he felt the symptoms had subsided. The home health agency will be here in the morning to start the tube feeding. He is feeling so bad that he was not upset about the tube feedings ( I know does not feel good). I will keep everyone posted. Thank you all for your encouraging words and for sharing your experiences with recovery. I know everyone is different but it helps to know that even though there are set backs that he will recover. I cannot tell you how much comfort I get from reading your posts. I again say that I hope one day I can pay your love support and kindness forward.
Love you all
Erica
I need to go to bed I am so tired(never knew I could be this tired) LOL

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Erica,

I know what a long haul this has been. John's had unexpected challenges following surgery. That's okay - let him get all of the troubles out of the way early (only joking) and then you guys can proceed with picking up the pieces and moving forward.

Glad you had medical care for him yesterday. and a Wonderful idea to get him back on the Jtube to regain some strength. It takes strength to kick this thing in the tush. And I know he can!

Our love back atcha!

Terry

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