I am so glad he is doing better. The poor guy just can't catch a beak. Hopefully now things will get better. Some DRs are just horrible and insensitive. I'm a week and half away from mine and not looking forward to it after what your son has been going through. NY would be easier for you. Being around Family and friends always helps.
Karmen

Chris is doing better. Tolerating soft food today and less pain. Walking and chewing gum at the same time!

I am headed back to Ohio and Mike is coming home. Chris is still in hospital on PPN. Pain has let up some. Soft foods are being tolerated. Dr F is gone for 2 days and told Chris he will probably discharge him Fri or Sat if he continues on this track, but leaving the pic line in until clinic visit on Monday or Tuesday.
He isn't getting enough sleep at night since his roommate is very ill and gets blood drawn hourly, lights on, noise, etc.
I told him 2 more nights and he will be sleeping in the hotel.

So much for best laid plans,
It is one month today and just got discharged. Still high white cell count. No answers. #3 CT scans later. Infectious disease team called in?
Withdrawal starting. 106 lbs. weak as can be, Chris hasn't walked ina week. Narcotics have taken over his body and brain.
We fly home tomorrow with a pic line in in case he ends up in the hospital. Chris is his usual unreasonable self.
I am looking at along summer trying to get him in shape.
Next stop will be permanent ostomy and perhaps the best solution for someone who is so uncooperative and doesn't want to help themselves at all.
I am tired.
I hope Chris gets some sleep tonight and feels better tomorrow to travel.
I pray we make it home.
Holly

I wish you and your family all the best!

Hi Holly
Why does Chris have so many complications? I don't understand. Are these some of the complications I may have to look forward to when I get my K pouch. I am one day away from surgery. I don't know where you get your strength from to keep going. You really are a very strong person! I know he will get better with your help!
I hope you got home ok.
Karmen

Good Luck tomorrow Karmen. Dr. Milsom is my surgeon too, and you are in good hands. I'm sending prayers and good thoughts your way for a successful surgery and a speedy recovery.

janna

Murphy'law should be Chris's law.
discharged doing ok for several days prior, tried to fly out and chris rapidly went down hill, dehydrated, vomitin from sittin in the wheelchair at the airport and the tube kinked, ambulance from there to fairview, nightmare there, transfer back to CC, still in ER, acute renal failure, low phospherous. I am home on the verge of collapse and my husband is back there with Chris.
Will update hopefully with better news soon.
They said he almost died on Wednesday.

chris is home on tpn
122.5 lbs
seeing gi in weston tuesday
ileus still there but no pain meds except ultram every 12 hrs
eating and walking around
thanks for hanging in there with us and praying too

Holly,
Good to hear a little better news. What a ride you have been on. Hope it contiues to get better. Thanks for the update.

BUDMAN

I just want to say I've been following your posts and I hope everything turns for the better.

How old is Chris?

Ultram is a time-released drug. Most K-pouch doctors do not recommend time-released drugs because they end up in the K-pouch before being fully broken down and used.

I have had a K-pouch for 30 years and never take time-released drugs.

I hope he gets along well now.

What an ordeal your family has been through. I certainly hope that each day finds Chris a bit stronger than the one before. He's very lucky to have such a supportive family.

Thanks Michelle, Chris is doing ok, seeing the GI tomorrow about the TPN term. Output still really high.


John-Thanks for the info on Ultram, that's CC pain mgmt. You can see why we get so frustrated.

FYI - Ultram comes in two forms, there is one that is not extended release. Not to confuse you anymore.

katey