We are in Cleveland now. Had to rush to Weston last Saturday, very long ordeal. Arrived here tuesday and Chris had surgery Wednesday. He has had many set backs.
He has a haematoma 13 cm and had to have a ng tube this am after fighting it off all night. Vomited quite a bit of blood this am and is now being transfused. Lots of pain and distention in his abdomen. CT scan showed no leaks.
Dr Fazio said surgery was very difficult because of adhesions and he almost abandoned the pouch.
We are hoping the haematoma resolves itself and no further surgery is required since it would mean possibly losing the k pouch.
They had to DC the pain pump because of delirium. IV pain meds now.IV blew during CT scan and new one was difficult but in place for now.

I fell down in the room yesterday and broke the blood vessel in my right wrist and bruised my right hip and thigh and arm.
NO I did not go to ER for x ray.
Other than that life is the same.
I feel so bad since Chris had been doing so well for his one year with the K pouch, May 10 was the anniversary date.
May 24 was the date of that dreadful emergency surgery in Florida and that air ambulance ordeal.
Chris had finished another semester in community college had worked a few different jobs and was training to be a camp counselor at the YMCA for the summer. He is quite upset that another summer will be spent recovering.

I will update when I have internet again, it has been intermittent at the hospital and non existent at the hotel.
Holly

Hi Holly and Chris,
I'm sorry to hear Chris is having problems, I'll never forget visiting him at cc shortly after he got his Kock pouch. Such a plesant and polite young man. Chris, hang in there, seeing all you have been through you have been an inspiration to me.

Holly, take care of your self and good luck to the both of you.......Don

Holly, I'm so sorry to hear about Chris. I hope all goes well, and I'm keeping you both in my prayers.

janna

Hi Holly,

Please pass on our best wishes for a speedy problem free recovery for Chris. He must be so fed up of all these setbacks, but he's survived worse so I know he'll come through.

Take care.

Shell

Thanks everyone.
Chris is fed up. He was doing so well and looking forward to his first summer without recovering from surgery, was all set to be a lifeguard at the YMCA summercamp in our area.
He will be better when they take the NG tube out.
I have met many new people here who never heard of j pouch.org
I have been passing out info
It keeps me busy and I enjoy helping others

I'm so sorry to hear Chris had to have more surgery. I hope his recovery is speedy and he can get back to his happy life with his Kock Pouch. Just a "Bump In The Road", soon this will be behind him too. Sending healing prayers, good thoughts and good vibes!!!

Thanks Jasmine
Dr Fazio said the valve is different now and Chris will be using a curved catheter to go up instesd of down. I don't quite understand this.
Chris still has the NG tube and is on TPN. He wants to get the tune out today. I am not sure the ileus has resolved. He also wants the pain pump gone, he is using it for his sore throat which isn't helping matters.
It has been too long there and no news from Dr's each day to look forward to or know how he is progressing.
Holly

Chris is still in hospital and getting worse each day, not better. Still in a lot of pain. Dr is back but did not see Chris, office hours are more importanat it seems.
We are all frustrated.Possible CT scan again , not sure.
I would never recommend Cleveland Clinic again. Dr Fazio may be a good surgeon but that's as far as it goes.Nothing is the same there as it was last year. I am not the only one experiencing this.

Oh Holly NO! This wasn't supposed to happen. I am so saddened to hear Chris is still in the hospital and not improving. When I was in the hospital for my perforation and we felt we were not getting any answers from the doctors Suzan came up with a great tactic that basically held the doctor hostage until we were ready to let him go. Since these docs and surgeons are so adept at breezing in for 5 mins or less and then leaving before you finish that important question, Suzan did this....

Once you get the doctor in the room you close the door to the room (for privacy of course ) and then you stand in front of the door so that anyone wishing to leave the room has to either ask you to move or physically lift you out of the way. I remember my infectious disease doc tried to leave 4 or 5 times, but couldn't because Suzan was blocking the door! We were able to get all of our questions answered that day and the doc was quite relieved 20 minutes later when Suzan stepped out of his way and he could leave. We got our money's worth out of that $500 charge!

Give my get well wishes to Chris please. They are not much and I wish I could do more (wave my magic get better wand?) for you and him. You try to take care of yourself too will you?

Hi Holly,

I am so sorry that Chris and you are still going through this nightmare! I can't believe the bad luck that Chris has had with all of his operations! We all thought that the Koch pouch was going to be the answer and he'd seen the last of the surgeon's scalpel. It just doesn't seem fair! Please pass on our best wishes to Chris and as Tricia has said, don't forget to look after yourself too.

Take care.

Shell

Chris was discharged yesterday to hotel and back in ER at 1 am vomiting
ct scan this morning
readmitted
waiting for results and Dr fazio
could be awhile since he has full surgery schedule today
will this ever end?

Well Dr Fazio said the hemaetoma is smaller but still there. A kink in what is left of the small bowel(don't know how that gets resolved)
Pic line started again, waited 4 hrs for x ray and I had to call the on call from here to get it done
Chris didn't call me back so I don't know what the results were or if the PPN got started.
Mike got sick and left the hospital about 7.
Waiting for todays report from someone.

The on call dr told my husband at 9 pm sat that chris's bowel is paralyzed and may require surgery resulting in permanent ostomy.
He had no right. He does not know Chris, Chris is not his patient. I am furious. The same doc had spoken to me harshly the night before in the phone when i expressed my concerns that chris had not been x rayed for the pic and dr fazio called the order himself to make sure chris would not miss ppn. he told me it did not matter if chris waited another 24 hrs for ppn!
some docs have no compassion or bedside manner.
and all at a patient and their families expense when times are tough enough.

I hope he feels better real soon!

Dr Fazio came in at 8 pm after a long surgery day. Thinks Chris looks better and will try soft food tomorrow. Output appears to be ileus breaking up.If all continues to improve Chris could possibly be discharged Sat.
Thanks for all the support and prayers and well wishes