Topic: Update on My Dad's surgery

An update in story form!

The players:
My Dad, a mild mannered 78 year old by day, and a superhero! (at least in my eyes)
The tumor, a nasty piece of work. Cholangiocarcinoma, klatskin tumor we'll call....Leroy. Bad, bad Leroy
The hospital, UCSD Hillcrest
The surgeon, Dr. Hemming. We'll call him the Magician

Our Superhero went under the knife on Wednesday, Feb 3rd. The surgery lasted somewhere between 5-7 hours. The Magician removed the entire right lobe of the liver, the bile ducts, and the gall bladder. As for the rest of the stuff around there (the intestines and bowels), the Magician inspected,detected, resected and reconnected them all, leaving no part untouched. Lymph nodes were removed, samples taken. As for Leroy.....HE'S OUTTA THERE! Our Magician believes Leroy and any of his clingy friends are gone with clean margins. Still waiting for all of the lab results. Our Superhero did NOT need any blood transfusions OR the ventilator (both were expected)

The Superhero made it into the surgical ICU around 7:30 that night. He had a neck IV with a couple of valves, and both arms had IVs. Heart monitor and cath installed and working. He also has an L shaped incision running from the right side of his body towards the belly button, then up to mid chest. There are two drains right above the hip area on the right side. Yikes...

Around 2:30 am they brought a new patient into our Superhero's room. A real nasty dude who had been in a knife fight at Donovan prison. He was missing part of an ear and had many stab wounds. He also came with 4 guards. These guards chained said nasty dude to his bed, and proceeded to chat ALL NIGHT LONG. Our Superhero, fresh out of a grueling surgery, got zero sleep.

The next day sees the exit of the prisoner and his guards. The superhero is in a lot of pain and very tired. We're hopeful for a good night, as he has the room to himself. 2 am comes around, and they bring a 94 year old lady onto the room. She comes equipped with many Drs , who discuss her case. They give her meds, then invite her entire family in the room. After a bit of talking, they UNPLUG her life support!!! The family grieves, the Drs talk, and then all file out leaving our Superhero with the now deceased lady. She is removed shortly, but our Superhero gets no sleep once again.

The next day we beg and beg, and the Superhero gets moved to another, hopefully QUIETER ward. He's put into a very small room....barely enough room for the 2 patients and all their medical paraphenalia. Guess what? The other guy has a large family, and ALL of them stuff into the room! More than 8 people, and they are running into the Superhero's bed, giving him no privacy or rest. Most leave around 9 pm, and we are hopeful for peace. Unfortunately, the wife of the other guy decides to spend the night. Here comes 2 am, and both husband and wife have night terrors. Screaming out "Hurricane..watch out!" and other such nonsense. A daughter returns around 3 am, yelling at her parents that they don't have the money for them to be there. Our superhero demands to be removed from the room. He finally gets a room to himself, and a little sleep.

The next day seems brighter. Our Superhero loses the neck IV and the cath. Still much pain, but lovely pain meds. That afternoon, he gets a roommate. A man who claims his address is "Usually between 12th and 15th streets". He responds yes to questions about drinking and drug use. He has a horrible cough and is covered in lesions. He also farts...a LOT. Like every 3 minutes! Sheeeeesh....

The next day our Superhero finally gets moved to the 11th floor, the transplant ward. PRIVATE ROOM!!!! Nursing staff who understand what he's been through! Unfortunately he has picked up an infection (Gee, you think the Farter had anything to do with that??) Anyone entering his room has to be gloved and gowned. Our superhero is also having problems keeping IVs. His veins are on strike. I think he had no less than 8 IVs started and infiltrated in a 5 hour period.

So this is where we are at. Our Superhero is still recovering. He's walking around a little. Feeling more like himself every day. Still in pain, but manageable. We are hearing murmuring about the Superhero's return home in a few days!! Our main problem right now is nutrition. The past month has seen the Superhero IN a hospital more than out, and almost always on a NPO..nothing by mouth. Now it's eat eat eat and grow that shrunken stomach! I think he's lost around 30 pounds this month alone, and he was skinny to begin with.
Thanks to ALL of you once again for the great support and advice. I will certainly be paying it forward smile

Re: Update on My Dad's surgery

Cinnamin.....Congratulations.  Indeed, your Dad is a superhero. I sure wish thought, he would have had his choice of roommate.  Looking at it on the bright side:  he is regaining his strengths and he has gone through the gamut of most undesirable circumstances one could encounter while recuperating from a major surgery. It should be upwards from here on. 
That is what I wish for,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update on My Dad's surgery

Dear Cinnamon, Thank you for the bedtime Super Hero Story. It  is "hysterically sad". I don't believe Teddy or I have been in a shared room for the last 20 years!! OMG what an experience. But we love a story with a Happy Ending. And the Super Hero goes off in to the sun set to the Malt Shop. Seriously though, it will take some time for him to build up again. It doesn't happen over night, my goodness look what he has been through. Wishing a more speedy recovery now and I can't wait for the sequal.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on My Dad's surgery

Cinnamon:
I got chills as I read your dad's story.  I can equate as Tom had some pretty weird room mates while he was inpatient at the Milwaukee VA hospital!  His roomate (when they needed his private room for someone who had mersa)  urinated on the floor by the sink at about 2am.  When I came in at 5am the room reeked of Urine.  Nurses and staff in and out of the room, no one cleaned it up.  At 9am I went and found the head nurse, brought her into Tom's room and pointed it out and said "How can anyone get well in this hospital when staff sees and smells something like that and does nothing?"  Tom's doc heard about it and immediately he was moved to the 7th floor and had a wonderful totally remodeled room.  My advice, if you have to be at the Milwaukee VA hospital for surgery INSIST on being on the 7th floor!

So sorry your dad had such an AWFUL experience.  You need to complain to the hospital and maybe (ha) they will give him a break on the bill...

Prayers coming your dads way as always

Go with God and KEEP KICKIN' THAT cancer.

Margaret

Re: Update on My Dad's surgery

But,such is life really and nobody sleeps in hospital,they only doze.Thats what I tell my patients anyhow.                              Janet

Re: Update on My Dad's surgery

Hi Cinnamin,

Thank you for sharing this news with us all. That is quite some story that you tell and I am glad to hear that your dads surgery went well, good stuff! I hope that your dad makes a great recovery and I wish him every success with this.

When my dad was in the hospital, his doctor told him the same thing that Janet mentions and that it is hard to sleep in hospital. He spent over 3 weeks on the ward and hardly got any sleep, then when he was transferred to a private room which he needed due to his PDT treatment, he still didn't get much sleep.

Here's hoping for a speedy recovery for your dad and my best wishes to you both,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Update on My Dad's surgery

Thanks for the "laugh" for I too have had interesting roommates. But to be honest, sometimes it is nice to have someone in the room with you even if you wouldnt have them over for tea!

Let the healing continue.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Update on My Dad's surgery

Cinnamin

I'am so happy for you guys yes your Dad is a Super hero

And you should right stories for children, no forget about
children,  Big Children like me, you had me in stiches really
I don't think I laughed this much in a very long time.

But so very glad for your Dad and you.
Yes You have all been given a chance


                  with the best of intent,
                                            Denise

Re: Update on My Dad's surgery

Thanks again to everyone! It's such a blessing to be able to talk to people who have been or are going through this.

A short update: Dad came home from the hospital, which thrilled all of us. My Dad told his surgeon "Get me out of here before you kill me!" and Dr. Hemming agreed. Dad picked up a nasty infection that they cannot control as of yet, despite all of the antibiotics. It attached itself to the staples of his incision. They ended up taking the staples out, leaving an open wound. It has to be cleaned and packed daily. He started retaining fluids, and his feet swelled to almost 3 times their normal size, making it difficult and painful to walk. They gave him lasix for the fluid....but he is a 78 year old man with prostate problems and a gaping wound across his belly. In their infinite wisdom they pulled his cath at the same time. More problems with his veins refusing any more IVs, so they gave him a PICC line.

Soooo, while he is at home, we had to have home health care services. He still needs antibiotics via IV 3 times daily, and that wonderful open would needs treating. My Mom and I have learned how to do the IV, but a nurse comes once a day to change dressings and make sure we are doing everything right.

Dad is very tired and having a rough time eating. If you remember, he was hospitalized for a week right before this stay, and on NPO orders the whole time. No food until 5 days after this surgery, so now his stomach has shrunk and he fills up so fast. I keep coming up with protein alternatives that won't fill him so fast, and he is walking around his house as much as he can. He's very frustrated because he was so very active before this vile cancer.

We are pretty darn sure that chemo is still in the immediate future. Just have to get him strong enough to do it. While the surgery was incredible and much needed, it was only the beginning. There's still a very long road ahead of us. I have faith that we WILL make it through all of this!

Any suggestions on getting food down him will be greatly appreciated. Thanks again for everything.......you are the best group around!

Janet

Re: Update on My Dad's surgery

Janet,
The only advice I have is to keep your dad walking as it encourages healing. Glad he is home where he will hopefully be more comfortable.

Hang tough.
Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Update on My Dad's surgery

You are doing so well,I am an RN and I think how wonderful for your dad that you can take on this technical stuff because it is a lot of responsibility and must be worrying at times.Anyhow it must be terrific for him to be at home  Janet

Re: Update on My Dad's surgery

I had an open wound after one surgery and had to change my own dressings at home. It's amazing how quickly things like that become just a routine. I'm sure you'll do just fine, and it's great that you can help your dad by doing his IVs. I'm sure it's a comfort to him to have you doing that.

Best wishes,
Kristin

Peace, hope, and healing to all!

Re: Update on My Dad's surgery

Janet:

Keep the faith, you can do it!  Tom also had a PICC line when he returned home from the hospital.  He picked up three different kinds of infections so they had to mix a special cocktail of antibotics for him.  Home health care only came out to the house 1x to show me how to care for the picc line and to show me how to administer the antibotics.  Pretty easy actually.  Tom did not have the open wound but he had the external bile drain bag (started with two of them) so it was a lot of changing of bandages. 

Now that he's back to the external drain bag, I'm back to changing bandages.  All in a day's work.  I agree though if he had a large open wound, I'd leave that to the professionals.

Soft bland foods might be best for your dad and easier for him to digest.  Cottage cheese, applesauce, soups may be something that you want to try.  And BOOST may give him the calories that he needs.  Tom is currently getting BOOST Plus as he needs to gain weight, and he loves the chocolate flavor.  A six pack runs about $9 here in Wisconsin.

As always, prayers coming your dad's way from Wisconsin.

Please tell him to KEEP KICKIN' THAT cancer.

Go with God.
Margaret

Re: Update on My Dad's surgery

Good Morning! The best news is that dad is home! Boy oh boy do I remember the stuff I did. Who ever thought in their life they would change bags and clean wounds? But, we get through it and then we say, I did that?? After Teddy had his Whipple I found that small amounts of food more often did well, especially comfort food. He did good on pasta, macaroni and cheese, soups, chicken made very soft like a stewed chicken, jello made with fruit in it. He didn't want anything sweet and only soft foods.  Teddy had also developed an infection that left 2 "holes" in his scar from the Whipple. They do take some time to heal.  I used to tell him to walk outside, like just from the house to the end of the driveway. Walking is so important. Bottom line dad, is now a SURVIVOR and the rest will come around as he heals. You are doing a great job as an advocate and don't forget to take some time for yourself.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on My Dad's surgery

Hi Janet,

Excellent news on your dad getting back home. I am sure that he will be much more comfortable at home than in hospital. I was my dads carer when he was at home so I know how tough a job it is that you are doing now, and you are doing an excellent job here.

When my dad came home from the hospital the first time he needed to regain some weight so the docs put him on the Ensure drinks for a while so maybe that is something that you could look at. And we spoke with dads specialist when he was having trouble digesting and keeping food down and what he said to do was eat much smaller meals but eat more often, and try and eat foods that are smaller and softer, he recommended minced beef as that is small and easier to get down. Soups were also recommend and I used to make a lot of soups for dad. And yes the walking around is also a good idea, especially after eating.

My best wishes to you and your dad,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Update on My Dad's surgery

Hi Janet!
I haven't been on the site in a while so have just been reading about your dad - what an ordeal in his recovery time! I've had some 'interesting' room mates too!
Anyway, back to the job in hand, wound infection/open wound. I too had one of these. 50 staples worth. It's all a bit horrible but you get through it eventually. I was having antibiotics about once a month, so was lucky in comparison but they also help drag your immune system down besides killing the bugs - or not!
I had my op in May last year, the wound finally finished closing in November so your Dad may have a while to go.
I started reading up on manuka honey & there are dressings made in various kinds (in the UK they're marketed by a company called Advancis) & maybe worth a try. I know some were not suitable while the wound was still deep but I really wish i'd found them earlier in the proceedings as the difference they made was huge in a very short time. In fact the wound healed in 6 weeks of starting them when the nurses were predicting at least another 12 weeks. And i didn't need any more antibiotics once I'd started the honey dressings.
As for the food situation I went on the little & often princple, cereals & soya milk if all else failed to entice, I also used a pea protein powder in fruit smoothies, i found any saturated fat didn't go down well, but I'm happy to say that now my digestion is almost normal although there are still things I will probably avoid for the rest of time!
I hope this helps, very best wishes to your Dad for his ongoing recovery.
Val

Re: Update on My Dad's surgery

What wonderful posts, Janet - thank you for the updates.  I hope everything's going well at home.

Val recommended Manuka honey to me when my sister was having a very bad time & we're both incredibly impressed with it.  I hope it helps you, too.

Very best wishes
Julia

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson