huge strides, possibly home soon

I wanted to share a little good news, also, with Evelyn's birthday yesterday, a ray of sunshine for sure, and a message that the road might be curved but it does come back to your own front door. !

it;s Sunday morning, Evelyn, I am sure you are resting after quite the evenings frivolities and fun - god bless you.  I am preparing for my hanbands home coming, possibly this WEEK. I am racing around super cleaning the house, and have a long list of itmes to buy before I take that long trip to Boston, how sweet it will be to have him wrapped up in the passenger seat next to me - the anatamosis appears to  be healed, no more feeding through the PCT line, strictly J Tube.  and he has the go ahead to start taking stuff by mouth.

My questions are, should there be a barium swallow this far down the road. and how do I manage the J tube for actual feeding at home?

I think some of you just used the tube for a short while - when did you know you didn';t need it anymore... 

But I am so happy he might be coming home, in the next 2=5 days. Actually slept most of SAturday yep, all afternoon, and a solid  nights sleep. I think we are turning a corner... 

Truebrit  

Thats great news that he is going home. Your surgeon will infom you when a barium swallow or any other test are needed and as far as the feeding tube, its determine also by his surgeon or doctors. I was on a feeding tube for seven weeks. May I ask where in Boston did he have his surgery ? I wish him nothing but NED on all his future CT's and god bless you both. Phil A.

That is great news that your husband will be home soon. Yes has Phil says, the surgeon will do any follow up barium swallows and endoscopes as he sees needed and he will let you know when the feeding tube is no longer necessary. As for taking care of the tube the hospital should give you instructions on the cleaning and what not. I wish you and your husband the best and he will be more comfortable at home and you will see an improvement daily, and do take each day as it comes. Thank you for thinking of me.

Take Care and Be Positive

Evelyn

 

On 6/21/2009 Phil A. wrote:

Thats great news that he is going home. Your surgeon will infom you when a barium swallow or any other test are needed and as far as the feeding tube, its determine also by his surgeon or doctors. I was on a feeding tube for seven weeks. May I ask where in Boston did he have his surgery ? I wish him nothing but NED on all his future CT's and god bless you both. Phil A.

Phil

my husband had his ivor lewis minimal invasive laprascopic at Beth Israel in Boston. We had a second opinion prior to the big day at Darmouth here in New Hampshire but they are still doing the 'open' method. We felt the better option was Beth. I have to say that my husband's case was probably the most complicated. He WAS notice past tense, stage 2 with no mets. A  lucky lucky man, the pathology report is completely clean. We think we beat the odds. There were as many complications as you could image with 26 days in ICU but I have to tell you, those people were on top of things, in spite of my raging and challenging and arguing every step of the way. But hey, I wasnt there to win friends, i was the advocate

He's been recovering for over two weeks now,on a surgical recovery ward. They had to inject botox into  his pyloric value last week to correct some vomitting and pooling issues. Seems to have worked so far although am i unclear how long this will last for, presumably he'll  have to have that again.  I feel such immense relief and am starting to feel like a normal person again, just knowing he might just be home by next weekend. Our home has been in a state of upheaval, the usual routines out the window, and me a basket case most of the time. It's a hell of a way to lose weight. 

i really wanted to put  something positive on this site, because my questions have been rather strong in terms of second guessing the professionals.. :)  Truebrit     

I know what you are going through and correct you are not there to make friends but to follow your husbands care closely. I like Beth Israel but my first choice was Brigham & Womens with a second opinion at John Hopkins in Baltimore but they could not due the procedure I wanted. I too was a Stage II and after surgery it was stated I had a small area that was a Stage III, so they upgraded it. All my pathology test were negative and no other involment anywhere and also had twelve lymph nodes removed as a precaution. My surgeon after surgery told me to have my port removed anytime I wanted for I would not need any additional chemo whatsoever. He will do well especially after going home and everyday he will feel better and better. This surgery is tough and it will take time. Take care and give him my best.  Phil A.

Glad to hear your husband will be home soon. Sorry it was so terribly complicated for him, but sounds like everyone was on their toes.  Also glad you got some sleep...we do different things with stress...sounds like you and I might handle it the same (can't sleep, can't eat).  The weight will come back when life settles down. I'm still at least 5 pounds lighter than when we started late in 2005, but about 8 pounds up from the bottom I hit over the winter.

We used Lahey and it always took forever to check him out (I threatened to take him to the oncologist office on the way home last time to pull the lock on his de-accessed port, we waited so long for discharge). If you can time his last dose of pain med in Boston shortly before the trip home, it makes it easier (we always managed to be caught leaving at rush hour).

Your husband might be slightly less sore since he was there so long, but I remember the incisions being bothersome in the car for the first week or two.  Try to get some more rest before he comes home...the care schedule is pretty rigorous and there can be many small bumps along the way. 

 

What great news to have your husband coming home.  Don't worry about the j tube feedings.  You won't have a problem with them.  Easy to do.

Best of luck to you and your husband!