VHL WARRIOR: 23 Days of Whipple Madness

 

Feeling Better

My son had his Whipple on Monday, March 30, 2015, at UCLA. We read everything we could find on the Whipple Procedure and recovery. My son had prepared himself for the epidural and a lot of pain. In prep, nothing but clear liquids leading up to surgery.

Shortly after arriving at UCLA they informed him that he would not be getting an epidural due to tumors on the spine. Said it might be risky.

THE SURGERY
Dr Hines said he did well during surgery. Was impressed by his anatomy. This is probably because they do this type of surgery more often on older people. My son is 32 yrs old.

Day 1: In ICU, kinda loopy and in a lot of pain. He had a button to push when he needed pain meds but misunderstood that he could push it as often as he wanted to. He estimated he was pushing the button about once per hour. Did much better when he pushed the button when ever he wanted. Slept on and off all day. Meds: They have him on a "study" drug to help prevent leakage, this makes him nauseous, so they give him meds to prevent nausea, this drug also elevates blood sugar, so they give him insulin. Plus steroids (he had bi-lateral adrenalectomy in December 2014), Antacids, Magnesium and pain meds. No rooms yet.

Push the Button!

Day 2: Dr Yeh (head of endocrinology) visited and made sure he had a room. Moved to the 8th floor with view of the Bruins Practice Field. (shhh, he's a Trojan fan). Nurses said to start walking...he's not so excited about this and waits till afternoon. He walked about half way down the hall and back. He's not dizzy, just a little weak. He'll try to go further tomorrow.
He's restless and can't get comfortable, still experiencing a bit of nausea but it comes and goes in waves.

Day 3: Doctors say he is doing well. They remove the bandages, the incision looks good. Want him to walk more to stimulate intestines so that they can start introducing liquids. Still in a bit of pain, sleeping on and off all morning. He walked a bit further this morning. Took a sponge bath and says he's feeling better. He threw up, it was mostly bile. I guess since, he's not eating, there is nothing for the bile to do. He was afraid of throwing up, worried about sutures. But said it was not as bad as he imagined it would be. The nausea goes away quickly. He walked a little more in the afternoon. He tried a sip of water...threw up again but not sure if it was from the water or just the nausea again. Was awake for most of the afternoon. Says he feels way better.

Incision looks good, drain still in.

Day 4: My son really looks good, little pain, walking ok. He has been sipping water and doing fine. But the "study" drug (wish I could remember the name of it) makes him nauseous. As soon as they give him the shot he throws up. Darn it, they just brought him Jello, Juice, Broth and Tea. He threw up mostly bile (they've re directed his digestive system). He was able to finish the Jello and then the guy with the XRay machine came in and the doctors said NOTHING BY MOUTH. ugh! Thought we were making progress.



Walking the halls of UCLA with a lot of meds.

So, he has to wait till tomorrow to try the Jello again. The XRay showed that his stomach is distended. They described it as full of gas and that sometimes it takes a little longer for the stomach to "wake up" after surgery. So that's what they think is going on. My son was nervous that they might have to do more surgery. But that wasn't the case...just a lot of waiting. I guess this why Whipple Warriors lose so much weight.

 
Day 5: They made him wait another day to eat jello and broth. They did two more XRays and the doctors have two different thoughts. 1. says that his stomach is distended and should wait to eat. 2. says that the stomach always swells after surgery and go ahead and eat. I don't like two different ideas. He did ok, till dinner and threw up again when they gave him the "study" drug. They let him continue with the jello and broth. He has his color back but is losing weight.

Day 6: More Jello, Broth and Juice. He really wants a cheeseburger. But, he knows he has to take baby steps. Today is the last day with the "study" drug. (pasireotide sp?) This drug helps prevent the pancreas from leaking. Not a lot happens at the hospital on the weekends. ~ More tomorrow.

Day 7: Not much pain, incision is healing nicely. After a couple of days of Jello and Broth, he ordered a Roast Beef sandwich.

I called the kitchen and said: I'd like a Roast Beef sandwich with white bread, cheese (Oh, you can't have cheese) and lettuce and tomatoes and avocado (Oh, you can't have avocado) and mustard and a fruit cup. He has to watch the fatty foods for awhile while his digestive track heals.

Hard Boiled Egg...didn't stay down

10 days without real food was really hard for him and I wish I had a photo of his face while he watched that Roast Beef Sandwich walk into the room. The nurse came in shortly after and asked where the sandwich was....lol. I think it lasted like 2 bites. Pasta and marinara sauce for dinner...not too tasty but it's food. And it's staying down (so far).

He still has to finish healing and figure out what foods he can and can not eat. He might get to come home tomorrow.

Day 8: So...he was scheduled to go home today.
But he threw up, is in pain (when he wasn't having much to begin with) and his white cell count is up. More tests.

Good News: CT scan looks good. White cell count came down a little. Will watch it. Drain comes out today. Going home tomorrow.

Day 10: The doctors dont know whats going on. Threw up at 6pm yesterday, 3am and 6am today. White blood cell count is up...not going home today.

Day 11: White Blood Count is normal today. They want to keep him through the weekend because he threw up again. Going to do a stomach flush? He is in good spirits...and has an appetite.

Day 12: Not going home today. Trying to figure out why he keeps throwing up.

Its day 12 and we are still in the hospital. Mostly because he is still vomiting. We are still trying to figure out nutrition, what works and what doesn't.

He also doesn't have adrenal glands and is on steroids for the rest of his life. (due to VHL).

The docs here say to eat whatever he wants, so far that's not working. Going to try Ensure to get some nutrition in him.

 
Day 18: (I lost day 13-17?)

We're still at the hospital. Everything looks good except his stomach is not working. Delayed Gastric Emptying. They are confident it will correct itself. He may go home Saturday with PICC Line / PPN.

He is doing ok, in good spirits.

 
Day 19: Last night he had a low fever (infection?) and a fast heart beat. They did an EKG. This morning they did blood and urine cultures and an Xray with contrast. All other numbers and levels look normal. The low fever is a concern for infection, but they can't find it.

His stomach is emptying! Finally! They want to wait a couple more days before he starts eating solid food. Moving in the right direction.

Day 20: Bacterial infection, possibly from PICC Line. Boo.

Day 22: E-Coli In his blood found at the PICC Line insertion point. Blood work is coming back negative. Will be on antibiotics for 2 more weeks? Had a blueberry pancake and hardboiled egg...so far so good. Home, maybe end of week.

Day 23: Homeward Bound! With a daily visit from a nurse.  The nurse injects a high power antibiotic to get rid of the E-Coli.

 

WHIPPLE ATTACKS

My son is 4 weeks Post Whipple (P-Net, VHL). So far, so good...but about once per day he gets an excruciating cramp right under his sternum that totally drops him to his knees. It lasts a minute or two, his abdomen is tight to touch. It comes in a wave, increasing in intensity. Dr says it's his intestines recovering from surgery another doctor said it's his muscle wall recovering. We've been keeping a journal, doesn't appear to be food related, it comes very randomly, sometimes skipping a day.

 

December 2015

These Whipple Attacks slowly went away.  Some folks have them forever...and my son gets one in a blue moon.  He still hasn't gained all the weight back...but he eats whatever he wants. 

He had a Tumor Ablation in his kidney to remove a tumor (Renal Cell Carcinoma) and will have another surgery to remove the two remaining tumors in the other kidney.

After that...regular scans.

Dr Livhits interviewing my son for a VHL Documentary.