Carl_Renee

Luv2lunch said:

I don't think Renee would mind me posting this.
Linda

Hi Linda and Ellie,

I simply haven't had time between catching things up around the house, work, the kids, keeping tabs on Carl etc by the time I think about coming on I fall asleep. Haven't even updated my mom on the phone I think about it around 9 p.m. when she is probably sleeping for work the next day.

Anyhow wish I could say he is home but sadly he remains in hospital. They did end up putting in a feeding tube. His bili continues to rise, his H&H and RBC continue to drop and his team of dr.s as well as liver specialists have no answers as none of the things going on are following a pattern of anything typical good or bad. I did conf with the dr. today and he does feel Carl would benefit being closer to family so tomorrow they are going to work with social workers between here and there to see if we can at least get him back to town to some kind of step down unit. Have a super long day tomorrow but thanks for checking in. I will try to post more tomorrow night after I know more on the status of what they are going to be able to do.

Renee

Carl_Renee said:

Thanks Linda
And everyone else concerned. He ended up with an enema last night as he ended up constipated even on colace and whatever else they have him on to keep his stools softened. Was pretty wiped out this morning when I called to see how his night was. His bili today is 39.1, Walking once maybe twice a day. He is trying to eat but starts cramping and gets sick afterwards. still has drain tube in. His dr. wants it pulled radiology says not yet so guess they are waiting. His dr. said he has pulled liver specialists on the case because he was at a loss, well so are they. Said he isn't fitting any of the normal criteria of things typical. I said welcome to our world and I warned you before you ever cut into him he is a special case...lol now they believe me. That this is why we have chosen as natural a route possible for helping deal with this. They have now said Carl may not be doing chemo. As to where in the beginning before surgery the plan of attack was surgery then at 8 weeks begin chemo, but given the healing time or lack thereof doesn't sound like they will have him do any as his body isn't doing well now. They did say he is high risk of a re-occurrence w/or w/o chemo. Right now it just isn't seeming his liver is responding well so only time will tell where things go from this point.

Now he has complained of back pain a lot since surgery. Never consistent and he has never had back issues in the past. I am curious because I know the drain tube rubs nerves in its' path, plus now he has the feeding tube -so many foreign things going on to his body. But I have also heard pancreas issues can cause back pain?? At this point I get nervous over every little thing. They tested for Hepatitis because with the continuing decline they feared maybe this was the case...it isn't fortunately:)

So now we wait for him to come back local for monitoring and pray that with him closer and us able to visit more he will begin healing and get to come home Thanks for the continued support and prayers.

Renee

Carl_Renee said:

Thanks Linda
And everyone else concerned. He ended up with an enema last night as he ended up constipated even on colace and whatever else they have him on to keep his stools softened. Was pretty wiped out this morning when I called to see how his night was. His bili today is 39.1, Walking once maybe twice a day. He is trying to eat but starts cramping and gets sick afterwards. still has drain tube in. His dr. wants it pulled radiology says not yet so guess they are waiting. His dr. said he has pulled liver specialists on the case because he was at a loss, well so are they. Said he isn't fitting any of the normal criteria of things typical. I said welcome to our world and I warned you before you ever cut into him he is a special case...lol now they believe me. That this is why we have chosen as natural a route possible for helping deal with this. They have now said Carl may not be doing chemo. As to where in the beginning before surgery the plan of attack was surgery then at 8 weeks begin chemo, but given the healing time or lack thereof doesn't sound like they will have him do any as his body isn't doing well now. They did say he is high risk of a re-occurrence w/or w/o chemo. Right now it just isn't seeming his liver is responding well so only time will tell where things go from this point.

Now he has complained of back pain a lot since surgery. Never consistent and he has never had back issues in the past. I am curious because I know the drain tube rubs nerves in its' path, plus now he has the feeding tube -so many foreign things going on to his body. But I have also heard pancreas issues can cause back pain?? At this point I get nervous over every little thing. They tested for Hepatitis because with the continuing decline they feared maybe this was the case...it isn't fortunately:)

So now we wait for him to come back local for monitoring and pray that with him closer and us able to visit more he will begin healing and get to come home Thanks for the continued support and prayers.

Renee