need help for my dad (Page 3 of 4)

The on call doc will look at the X-ray or films and give me some idea. Monday will talk to the radiologist and the surgon doc about the right side. Its hard to get in touch with doctors.
On call doc thinks he can eat need to confirm. They think he can leave icu today. Hopefully he will do much better soon. We want to leave the hospital ASAP too.

Dad left ICU. We were happy for a little while and then he cough with orange mucus once. pneumonia or what??? very angry. Tomorrow, I'll talk to all doctors/nurse about this. They are testing the culture for mucus. I hope dad is fine. Hopefully, it's not a big problem.

This whole experience sucks!!! I can't believe I am so unlucky one thing after another.

Still no food is allowed. Will ask about it tomorrow. I seem to have a cold too.
Going to sleep. Hopefully tomorrow can bring good news. Whatever it is as long as its good news.
Thanks!!

Lovedad: I understand the frustration. I see Dr. Fong at mskcc. I love him even though he keeps giving me bad news. The only thing I can say is if your surgeon is highly rated, then good. BUT Sloan Kettering is not far from you and it might be worth a trip. I doubt you would have the same mskcc onc that I have because dr. Kemeny works with her pump, but there are so many research docs there I feel it's the best place for me.
I remember how frustrating the first few months were. From Feb 2011 until April 2011 all we did was tests. Then I switched to Sloan Kettering. April was my surgery to insert pump and then nothing but problems until late June. Then we mostly got a plan in place, although it changes monthly.
Many of us have experienced your frustration and I pray you get some kind of plan in place. But don't be afraid to look elsewhere.
There is also dr. Kato at ny Presbyterian who is supposed to be wonderful with "inoperables". Good luck.

Thank you Kris! What does pump do?

How long will you spend each visit in Sloan? Can surgon app + onc app in one day? I am closer to Sloan then you are. I'll take dad to Sloan, but he can't get out of here yet. Hopefully, we fix it soon. It's a hard commute to NYC no matter where people are, but I'll do my best.

The residence stopped by again said radiologist thinks right side smaller bile branches maybe blocked so much that the bile doesn't go to the main right duct. Radiologist doesn't think it's worthy to put drain or multiple drain there. Seems like radiologist gave up on draining the right side.

I asked them please talk again. We have to have a plan to do something. bilirubin 18 is still high...  this seems simple but why it's so difficult.

The pump delivers chemo directly to the tumor as long as there is only 1. But it was a big surgery. It is stitched into my abdominal wall. I think Dr. Kemeny is brilliant but as a person I do not like her. But there are many oncs there that specialize in hepatobiliary and gastro cancers. Dr. Fong should be able to tell you who he recommends for your father.
My trips to Sloan depend in what I'm doing. But it is a big commute. I take the train from Trenton. Hopefully you can see both docs in one day. I have only done that a couple of times but since I am inoperable I only meet with Dr. Fong every 6 months or so. And I do have another onc that I see when in treatment. He is closer and takes his orders from Dr. Kemeny. So that is an option too if your father is able to get treatment.
It sounds like Dr. S. wants to do the best for your dad. That's important too. But you do need the best care also. I hope his bilirubin drops so you can have some options.

Thanks Kris! The Sloan nurse told me if Dr. Fong sees my dad, he can also walk us to ONC. One day can see 2 doctors usually. Sounds great if we can work with someone locally, not NYC every treatment, that'll be great.

Dr. Schreibman seems good so far. He seems very much willing to work with NYC doctors. I like it.

Right now, my dad is back to ICU, I don't know what's the next step is. Trying to find out more. Hospital experience sucks. Horrible place.

Hi lovedad,

I am sorry for your pain in trying to deal with all this. I think you are doing what you need to do for your Dad already, which is be there for him. I have not been through this, but I can tell you what I would do. I would dig deep down inside and find every ounce of strength I had. You need to get hold of your emotions. I would also ask the doctor what they are doing to try and help your Dad and make sure I said to do everything possible to try and help him. Is he on antibiotics if the doctor thinks he has an infection? I'm sorry I can't help more, but I am sending prayers and good wishes your way.

Love,
-Pam

I asked the nurse, she said liver function came down a little today. was 80 in the past few days, today 60. bilirubin was 18 for 2 days, and 13, and now 10. She said they have not found heart detect. I see numbers improving, but not sure why doctor said it's not working. Doc said if left drain is working, the bilirubin should come down in 1-2 days. My dad's bilirubin staple for the 1st 2 days and come down a lot.

My guess maybe infection after they put in the drain in his left side that makes the numbers/heart rate/blood pressure swing. But bottom line is he's improving. He was not allowed to eat until yesterday and not allow to eat again. Any human being will be weak without eating. I need to be sure ask the nurse to have Dr. Fong look at my dad's whole case, not just dial a phone to call.

I am really hoping some doctor in this world can help him. Praying........

My dad's figures pretty much stable. Getting little better and better, but not quickly a lot better. I am afraid they'll stop treating him even the infection .... I found out Dr. Diehl's mom also very sick and he left town. No wonder there was a bit of delay during the time we were in the hospital. Anway...

Doc said because the liver function not good, we can't treat the cancer; because of the cancer making him weak, liver function is not good. This is catch 22. We asked doc to help ask again why can't we drain the right side. If right side is also drain, it must be able to help bring the numbers better. But innervation radiologist doesn't agree to do it. Reason is not very clear, but some doc said not safe to do it. May kill him right away if not aim/drain the right spot? Doc will help ask innervation radiologist again...

I have talked to my dad all I need to tell him. He told me to be brave. ......Praying.