A true story, and a laugh!

During Mary's odyssey of hospital rooms, she had one roommate, I'll call her Judy, from a little place in CA you never heard of. Someplace not close to Stockton or Sacramento but not far from those towns either. A nice lady, probably in her 50s.

Two of Judy's lady friends showed up for a visit one morning. They arrived exhausted from their 2.5 hour drive down from where ever. Nice people, friendly and as chatty as they come. Their conversation is what needs to be recorded for posterity.

"Judy, the drive was simpler today because I used your GPS. Thank you. I only got lost a few times with the GPS telling me where to go. It was a little difficult to use because I had it between my legs as I drove." said visitor #1. She had already told me this was her 4th visit since they transferred Judy from Podunk's hospital a week or so ago for her surgeries.

Judy, "Why didn't you attach it to the dashboard or the windshield"

"I couldn't get the suction cups to stick on anything." says V1. "I had the 52 page manual but I couldn't find anything on how to make the suction cups work. I licked the suction cups and that didn't seem to work either. So the best placed seemed to be between my legs so it was secure and wouldn't fall and break. I could look down while driving to see the map. I thought maybe the suction cups only worked in your Taurus and not in my car."
Judy, "There is a little bar you move to make the suction cups work."

V1, "Oh, like a lever? I saw that but I didn't know what it did.

"Yes, a lever. That's a better way to describe it." says Judy.

"Judy, do you have any cartridges for the GPS? It has a slot for a cartridge and I wondered if you had any cartridges for it." says V2.

Judy responds, "My grand nephew set it up for me because you have to...um... put it in Internet it to get it started. I don't really understand what the cartridges are for and he didn't explain it to me. And, no, I don't have any cartridges. I think you need cartridges to make it talk to you while you are driving."

V1, "Oh, it talks just fine. Except when its between your legs you really cannot understand what its saying. So, I would just look down and study the map while driving." Let me see, assume 60 miles per hour on a California freeway (88 feet per second) while V1 studies the GPS display in her lap to figure out what it has just told her to do. If she takes 5 seconds, that is 440 feet or about 30 car lengths. I hope they get home safely.

"Judy, I discovered something else about your GPS. You can unplug it from the car and take it inside to program it. There is enough..um..electricity from the built in thingy so you can program it while sitting at a table way from the car." V1 says.

"Really, you mean I don't have to sit in a hot car to program it?" says Judy.

"Nope, it works just fine because it has built in electricity." says V1, "Although I was not able to program it to avoid certain areas or roads like 101."

Then visitor #2 says, "It worked pretty good but it made her get on Highway 101. I just hate 101 and didn't want her to take it. That's why we were later than planned. I made her get off of 101 several times." The patient, Judy, I should comment, had been doing a perfect impersonation of a chunk of granite since my arrival before 7AM and wouldn't have known if the sun stopped in the sky today. But, she now knew her visitors were late.

For those who know they bay area, it it virtually impossible to get from no place near Stockton or Sacramento and arrive at Stanford unless you are willing to drive way out of your way to avoid Highway 101. Which, apparently, the two visitors tried to do by simply getting off of the freeway. What a GPS will do, of course, is give you instructions to get back to the same freeway you just left--Highway 101 in this case. Hence, V1's comment about getting lost three times during the drive apparently at the insistence of V2.

OK, at this point I am dying and trying to not laugh my ass off. The suction cup lever I understand--sort of. The description of a memory card just about had me choking to death but when the concept of a built in battery was beyond them, I thought I was going to laugh out loud. Then to discover they were deliberately leaving Highway 101 only to have the GPS direct them right back to the route they were trying to avoid, well, I had to bite my cheek!

"Judy, the model you bought is much better than the model our friend Sally bought." says V1.

"Oh, why?" says Judy.

"Sally is really frustrated with hers. It only talks French to her and her French is not so good anymore because its been so many years since she studied it so she basically only looks at the maps while she is driving." says V1.

Judy responds, "I think she can change that but she has to put it in the Internet to fix it." At this point, I had to leave the room. 'put it in the internet'? She really said that--twice!

Clarity, clarity

While talking to my cousin, Dr. MaryJo, gasped when I said Mary was driving this week. Dr. MaryJo lives in St Paul so she hasn't seen Mary and reads this blog or we talk by phone now and then. I asked why she gasped and the good doctor said, "She is on heavy use of Vicodin for pain and she is driving?" Ah, lack of clarity!

Mary was on Vicodin for pain after ERCP#3 (performed as an outpatient at Stanford) and until she was admitted later that same week--a total of 60 hours. Once in the hospital, they switched to phentanyl. The gall bladder was removed on Saturday, April 18. After that surgery, the strongest pain killer Mary has needed is Tylanol--very infrequently.

Mary had a regular visit with our opthamalogist today--standard stuff for someone with glaucoma and nascent cataracts. Mary explained what was going on and our eye doc revealed that he is on the teaching staff at Stanford. His comment to Mary was, "I want a regular appointment with you in four months and you will be here, Stanford medicine is going to take care of you!" Love that vote of confidence. And her eyes are in great shape--glaucoma is under control because of drops she takes every bedtime.

The last item for today is Swine Flu. Unfortunately, Santa Clara county aka Silicon Valley aka south bay aka where we live is suffering from a high frequency of suspected cases. One of our schools has closed because a student came down with Swine flu in the past few days. The county is considering cancelling all large gatherings of any kind. Perhaps it was a good think the Sharks blew the Stanley Cup playoffs or they'd be performing in front of an empty arena. Well, if the next flu us called the "Canadian Flu", then Minnesota would be in deep trouble.

A clear and descriptive website

Wandering around the web at this hour, I found this particularly crisp website describing Mary's situation to a "T". It is the Johns Hopkins site and has a multipage description ranging from introduction to therapy. The illustrations are wonderful and the explanations are clear.

I have also listed this site on our home web page under medical links if you have trouble finding it later.

Pat

It was 4:40AM!

And my alarm sounded because I was taking Reenie to catch her 6:30AM flight at San Jose. She got me in sweats, grungy and unshaven for her ride to the airport and I dropped her off at 5:20AM. Tom reports he has her in custody as I write this so she succesfully made it to Do Loot courtesy of Northwest airlines. My son wanted to know if Duluth really had an airport and I assured him it did. Now we have proof, Reenie arrived by air.

When I got home, Mary was still asleep and I went to my downstairs office for a 7AM teleconference with our German employees. I am the co-chair of a company wide Engineering and Technology (ET) conference being held in seven cities around the world over the course of about four weeks. We start on May 18 and hit Tokyo, Singapore, Taipei, Shanghai, Bangalore, Frankfurt and finish here in Silicon Valley. We have about 1,000 papers to judge, 1,300 attendees plus flying executives to various cities--its a logistical challenge, for sure. Obviously, my plans have been significantly changed and now I am only attending the local event here in Santa Clara. The rest of the organizing team (all three of them) will be tag teaming so we cover all the venues.

After my telecon, Mary was awake and made herself breakfast. As I noted previously, our cleaning service was scheduled for today so Mary and I finished the prep work that Reenie and Mary had started yesterday. They arrived on time and Mary then headed to her hairdresser for an overdue haircut.

Yesterday's diner was beer can chicken done on the grill. If you do follow the link, be sure to read the reviews about the recipe. And, yes, we do have one of those $5 holder thingys that make sure the beer can and the chicken don't fall over. Mary said tonight's dinner will be a simple chicken salad with the leftover beer can chicken. Sounds great!

Mary continues to get stronger each day. She took herself to the hairdresser, fixed her own breakfast and lunch, and generally tackled a light day with great gusto. I am very glad the surgery is in 10 days, she will be so much stronger then.

That's all for now,

Pat

Continuing to Normalcy

Is that a word? Normalcy?

Anyway, we are on our way to being more normal. Mary drove for the first time yesterday, just around Los Gatos but still the first time she has taken the wheel for over a month. Reenie and Mary did get to the park and they did walk a bit along the pattern that Mary often walks with our dogs. Except Mary didn't have the strength to do the whole loop at one time so she sat down for a while to catch her breath. No, they did not take the dogs with them.

Our weather has returned to early spring. Its colder, so much so Mary and Reenie put the top up on the convertible. Yesterday was very grey but today the sun was out as I drove to work.

Our maid service arrives tomorrow for the first time in a month. We have them in every other Wednesday but we cancelled their last visit because Mary had just come out of ERCP#3 and was not up to leaving the house for a couple of hours. Nor, was I able to ready the house for the cleaning process as I was playing nurse. With Reenie's help, we will be ready tomorrow and that is good because Wiggles is a dust bunny generator like you have never seen. The most common tool used in the house is not electronic. Rather it is one of those sticky rollers that pulls while dog hair off of dark clothing. When the granddaughters were here for Easter, I gave them our battery powered vaccuum cleaner and instructed them on the finer points of capturing dust bunnies. They took the job seriously and did a great job of removing dust bunnies.

Reenie returns to Da Loot tomorrow. She will be back from North Country on May 19--we hope about the time Mary is released from Stanford. Renie is hoping to not experience the "white rain" that occasionally happens in northern Minnesota while she is home. One cannot use the s--w word in May, it makes Reenie crazy. S--w is a 'four letter word' to someone who is suffering their seventh month of cabin fever.

Pat

What about?

Here is an answer to a question I recieved today.

What about a transplant? Apparently, Klatskin's tumor follows the walls of the bile duct system and does not actually attack active liver cells, just the walls of the ducts. For that reason, a liver transplant would not work because Mary's bile duct system is being removed. Medical science has not mastered bile duct transplants.

Think of the bile duct system as the delta of a river (Mississippi) with hundreds and hundreds of channels in a large area (the liver). The difference is that the bile fluid flows from the liver with all of these interwoven small channels to collect into larger and larger ducts until it reaches the largest ducts we know as hepatic ducts and further down, bile duct. In the case of Klatskin's, the cancer only grows on the shores of the channel (walls of the ducts) and never leaves the shore area. It does grow in size to dam up the channel (constricted duct). And, Klatskin's easily moves up the duct to the smaller and smaller ducts. Hence, removing the common bile duct, the right hepatic duct and all the small ducts connected to the right hepatic duct is the best way to remove the cancer. Unfortunately, the liver material has to come along because there is no way to separate them. The associated arteries and veins also need to be removed too. And, the more that is removed, the less likely of recurrence because the cancer is gone.

Why the right hepatic duct? Because ERCP#4 showed it too was constricted and a stent was placed to allow the bile to flow to the intestine. Stents are good for about 8 weeks so we know the stent was temporary relief. None of the ERCP procedures showed a constriction in the left hepatic duct.

We are also making plans for Mary's adult children to come visit either pre or post surgery. Unfortunately, because of the risk of infection, flu, colds, etc., the granddaughters will not be visiting for a while. But, they were here for Easter so there has been a recent gathering.

Mary and Reenie planned a good day today including a walk in our local park, a drive with the top down on the convertible and generally a relaxing, low key day. I've been at work all day so I didn't get to play with Mary and her sister.


Pat

We do have a diagnosis

And its not good.

Mary has cholangiocarcinoma and is likely Klatskin's tumor. The treatment is major surgery and that is scheduled for May 11. I am using our home page for summary and overview information so by starting your visits on http://www.lamey-hughes.com/ you can read the overview of how we got here and Mary's condition. You can also read about the plan for treatment and issues. There are links to easily take you from our home page to this blog.
Overall, Mary is feeling very good now. She went to our regular Sunday breakfast with friends (in addition to Reenie, we saw Barnes, Terry, Ingrid and Mary R), went shopping yesterday (hit three stores), and although she gets tired easily, is clearly on the mend. And we need her as strong as possible for the next surgery.
Removing the gall bladder accomplished two things. One, it stopped the horrible pain Mary was having. Two, it provided an opportunity to do a real pathology analysis of Mary's internal workings and got us an early diagnosis for this particular cancer. Normally, a patient doesn't realize they have this problem because there is no early pain (like Mary had). Instead, they simply turn jaundiced one day and by then its too late. In Mary's case, the Klatskin's tumor blocked the cystic duct that connects to the gall bladder. That blockage created both the jaundice and the horrible pain that Mary was having. Those two items together caused us to find this problem much, much earlier than is normal for this type of cancer.

We are not surprised by this diagnosis. The first doctor at Good Samaritan, after performing ERCP#1 and getting the results from CT Scan #1 told us this was the presumptive diagnosis on March 31. Moving to Stanford was the action of getting a 2nd opinion. And, now we know for sure.

We are going to have a 'normal' two weeks and then Mary goes for surgery on Monday May 11. Reenie leaves this Wednesday and returns the 19th, about when Mary should be exiting the hospital.

Pat

Saturday Morning

We're having a nice quiet Saturday morning. Mary is definitely feeling better and all of her systems appear to be working--finally!

We are looking forward to the outing tomorrow. Reenie and I will head down a bit early and do the Farmer's Market shopping. Then our friends Mary and Ingrid will pick up Mary and bring her to the Purple Onion. We haven't had a good Sunday ritual morning since March 15th so we're looking forward to this return to normalcy.

Pat

Friday Evening

We saw the doctor today and had a nice long conversation. The outlook is becoming more clear and we'll be letting you know what the plan is soon.

Mary had a good day and is eating well. Reenie is an angel and fixes great meals plus she is a great at home nurse. It makes things so much better. Mary and Reenie are both looking forward to our Sunday morning ritual at Farmer's market and breakfast at the Purple Onion in Los Gatos.

That's all for now,

Pat

Thursday morning

Wednesday was a very good day. Reenie has thoroughly taken charge and given her experience and background, the patient is recovering nicely. Mary spent quite a bit of time sitting in the kitchen and talking to Reenie. Reenie also sent her to lay down or nap when it was clear she needed a little healing time. Reenie is preparing food that Mary likes and, therefore, is eating.

The surgeon's office called and asked to move the next appointment from May 1 to April 24 (tomorrow). We don't know what that means but we'll be there. We really want to know if removing the gall bladder has a favorable impact on the blockage/constriction in the hepatic and bile ducts. We're hoping the tests done so far will give a clue.

That's all for now,

Pat

Tuesday Dinnertime

Reenie is here and I feel like the calvary just came to the rescue!

The kitchen is clean, the groceries have been purchased and put away and Reenie is making an asparagus, prosciutto, mozzarella pasta dish for dinner. Yeah!

As for Mary, she is feeling better today than yesterday. She did take a shower this morning but the effort put her in bed to rest up from the exertion. She has eaten a bit during the day but not a lot. We need to get more food into her. Mary has spent most of the day sitting up in her lounge chair watching old movies--and chatting with Reenie or me depending on the topic. I'd say her pain is lower, her energy is appropriately low but her spirit is definitely on the mend.

The next step is a meeting with the surgeon currently scheduled for Fri May 1. We assume that if any of the tests come back with definitive news, we'll be getting a call.

Reenie and I went grocery shopping. She quickly remembered how to drive a stick shift--even remembered to take it out of 1st gear--eventually. And, she has mastered the geography of Winchester-Santa Cruz, Blossom Hill, Los Gatos Blvd and Lark--the basics for navigating our town.

That's all for now. I'll be heading to work in the AM and Reenie will be here with her sister.

Pat

Mary is home

And in discomfort as is often the case when someone gets home from the hospital.

Mary's sister will arrive Tuesday afternoon so that helps on the caregiver front--heck, Reenie can cook.

Now its just waiting time until she feels a bit better.

Pat

No answer and heading home

Mary was told this morning that she is being released today.

My thinking is that they'd keep her for at least a day or two longer to take more blood samples and see what direction this thing is going. Apparently not. They still don't know what it is that is causing the constrictions in her hepatic and bile ducts.

They told her she had an appointment with the surgeon on Friday so I guess that means they assume its slow moving whether its getting better (inflammation) or worse (tumor).

I am on my way to the hospital now. I have asked Mary's sister Reenie to change her plans and arrive earlier than Thursday. We'll see what the airlines allow her to do with the existing ticket.

Pat

Sunday evening

The sun is down, the floor is becoming very quiet and Mary is drifting in and out of sleep. After dinner, she did her third walk of the day, and this time she did four laps of the floor. I counted paces (my paces) and each lap is about 130 paces times 2.5 feet resulting in a 330 foot lap. So three laps is 1,000 feet or so. She was very determined to do four laps after dinner and she did but then she got back to the room and sort of just faded away.

The blood tests being run, for those who know what they might be, are measuring IgG and the other is ESR (erythrocyte sedimentation rate). From the info we have recieved, these appear to give some indication of the inflammation levels in Mary's system. We haven't talked to an internist yet, but we would assume that they are trying to figure which direction the trend is going. If its up, that is bad. If flat or down, that is good.

Its 8:30PM and Mary just said she is tired. So, I think I will tuck her in and head home. I know the dogs want to see me.

Pat

Dinnertime on Sunday

Mary just finished her 3rd meal today. All three meals have been full regular diet so she is eating big people food. She attacked all her meals with gusto although she couldn't finish them--her tummy has shrunk after several weeks of not eating.

She has taken two walks so far and is planning another soon. This part of the hospital is laid out in a trangular fashion so she is doing laps of the triangle. Her first walk did two laps, then the 2nd walk went to three laps. We'll see what happens with the next walk, her after dinner stroll.

The pain killer today consisted of Tylenol because she is not having the sharp pain that existed before the gall bladder was removed. She describes the pain as "four holes in my tummy and someone was in there mucking around" which I think describes a laparoscopy pretty accurately.

They have been running blood tests all day but they haven't told us what they are learning. The nurse did say the blood tests are "pretty unusual" so they are looking for some indicators or markers associated with the inflammation, I assume.

We haven't talked to a senior member of the team today so we don't know the likely plan. The junior resident, Dr. O, did say that Mary might be released tomorrow, Monday, depending on the results of the blood work.

That's all for now,

Pat

Santa Cruz mountains from Mary's window

For those who know their geography, the San Andreas fault lies between us and these mountains. It runs parallel to the range peaks.

How far from the hospital? Not far. The peaks are about six miles away so that puts the fault on the order of three miles away.

Pat

The tincture of time

"The tincture of time" were the words used by Dr. Vesser, the surgeon. After the gall bladder was removed, he said the best medicine may be the tincture of time to see what Mary's body does with the inflammation. So here is the 18 hour report (about 18 hours since surgery ended.)

Mary's call woke me up this morning. She ate a full breakfast of solid food about 8AM, woke me up at 9AM, the sharp pain is gone, she has some discomfort from the four holes made by the laparoscopy and is chomping at the bit to start the recovery process. They have removed the oxygen meter from her finger and taken away the oxygen supply. She still has an IV in and she has the leg massagers on. If or when she starts walking, they'll take the leg massagers off. She asked me to get there asap with a robe so she can start walking. Why a robe? Stanford's hospital gowns are particularly good at revealing backsides and our girl is definitely feeling better if she is worried about exposing her backside.

I'll be there before 11AM so we can start her walking exercises.

Tincture of time, I like those words.

Pat

Mary and anesthesia do not get along

After the two doctors talked to me in the waiting area, I waited for a while and then decided to have lunch in the cafeteria. When I was done, I called the operator to learn Mary's new room #. As I walked into the room, I heard her asking the nurse to find Patrick L-a-m-e-y. I was stuck behind one of those cart thingys but I announced myself. At that point, Mary closed her eyes and relaxed. Let me see, that was probably 3:00-ish.

Its now after 7PM and Mary has spent most of the time with her eyes closed and lightly sleeping off the happy juice. She has asked for and gotten more fentanyl because she still has pain in the abdominal area. She has walked to the bathroom, drunk a tiny carton of apple juice and generally just been out of it. In other words, her normal recovery from anesthesia.

She is on an IV with potassium in it, has these amazing massaging airbag things on her calves and thighs to minimize the risk of blood clotting, has an oxygen tube up her nose, a meter on her finger and is currently propped up in a sitting position via one of those hospital beds that bends in a million different ways. She was given a regular meal consisting of an iceberg lettuce salad, some form of grey meat with brown gravy on it, a slice of a sweet potato, a medley of corn, peas, carrots and beans and some form of yellow custard for dessert. She drank the apple juice that came with it and has not touched anything else.

We've seen one internist and otherwise it appears to be a typical Saturday night in a hospital. Really quiet, not much going on other than the routine stuff.

This room also has a floor to ceiling window and it faces west towards the Santa Cruz mountains. It is a great view, actually. We get a beautiful afternoon sun and, fortunately, window blinds to cut the heat when it gets to be too much--like today. Mary's bed is the one closest to the window. The sun is setting behind the mountains right now--the computer clock says 7:35PM.

Shift change is at 7PM so Mary's new nurse should appear anytime to introduce herself and take vital signs. After that, I'll go rescue the dogs and find my own dinner.

Later,

Pat

The surgeon came out...

and now Mary is missing a gall bladder.

Dr. Vesser said that the gall bladder was heavily inflammed and he also removed the cystic node. The prelim reading of the node by the pathologist was negative for tumor.

The bottom line is that they don't know what is causing the problem. Removing the gall bladder probably did not hurt the cause of figuring it out nor is it clear it helped the cause of figuring it out.

So the surgeon is still slightly in favor of a diagnosis of inflammation rather than tumor. Based on what he saw during the laparoscopy, he saw inflammation or at least what looks like inflammation of much of the cholangio area: liver, hepatic duct, common bile duct, etc.

Next steps are to see if the body can recover with rest and meds. If not, major surgery may be in line in a few weeks.

Mary will be moved to a surgical floor instead of back to her room with the really nice window. Bummer Hal, I liked that room.

Pat

Counting Stents

We are still waiting. They have a status board so those waiting can track the activity on their loved ones. Unfortunately, no one gave me Mary's case number which is the way its displayed. Fortunately, there are only two ORs today so she is either 57936 or 59091. They both have similar status so it doesn't matter. In reality, the only thing that matters is what Dr. Vesser says when he comes out.

This waiting area is known as E2. E2 is the major surgery area for the Stanford complex. Its the same area I waited in for our friend Mary (MOR). You can walk down memory lane by visiting http://morstatus.blogspot.com

Ingrid has dropped a note and wanted to know what happened to all the stents. At Good Sam, Dr. Terry Lin inserted two stents during ERCP #2. At Stanford, Dr. Banerjee removed both of those stents during ERCP #3 and replaced them with a single, larger stent after taking the biopsy samples. Mary's pain that started on Wed afternoon may have been from a blockage further up the hepatic duct so Dr. Banerjee inserted a 2nd stent during ERCP #4. Given Mary's somewhat lack of pain this AM, that stent has provided some benefit.

Some kids, part of a large family waiting for a surgical outcome, just arrived with chips and soda. I am about to attack them and steal their food.

More later during this hospital hour.

11:15 and they rolled into surgery

Now starts the real hospital hour.

Pat

A hospital hour is really long

Still waiting for her slot in the OR.

They are giving our girl potassium. Her blood test must show that she is low on electrolytes.

The best question of the day, as we have been visited by roving bands of support doctors and nurses is, "When was the last time you ate or drank?" When she responds, "Wednesday" they do a double take. They obviously expect to hear something like "midnight" or "last night."

We've met surgical teams, internal medicine doctors and the best was the nice young lady with the portable scale. She weighed Mary and the scale readout showed a gain of 1.5 lbs since her last weight measurement on Monday here at the hospital. I suggested to the attendant that the scale was not level because there is no way Mary could have gained 1.5 lbs on a diet of saline solution, fentanyl, phenergan and other IV deliverables. She assured me she had 'zeroed' the scale and it was accurate. Yeah, right. I don't believe its important so I just let it go. She will lose some weight when they take the gall bladder out.

The lead internist and hospitalist for Mary's team is Dr Lisa Shieh.

More later--a hospital hour later,

Pat

A hospital hour IS a hospital hour

While we were talking with the anesthesiologist, his pager sounded. He stepped out to take the call and when he returned, informed us that Mary has just been bumped because of a trauma patient from ED.

Mary is the only scheduled patient of the day so he was sure that she would get in by late morning. Or, his most confident statement was that Mary and her gall bladder would be separated by 5PM today.

Given that news, Mary asked for a fentanyl, a half dose of phenedren and her iPod. I must say that the addition of the 2nd stent yesterday had a very positive impact on the pain she was feeling before the 2nd stent was placed. Of course, we are most hopeful that the gall bladder removal is the key to this mess and really solves the problem.

No further news other than our two dogs were really confused to have me wake them up and feed them at 5:30 this morning. They were all settled in to the dog run as I left.

More later,

Pat

A surgery nurse visited

We are now in a hospital hour waiting for Mary's slot.

Pat

It's morning

We are waiting to hear from surgery that they are ready for Mary.

Pat from Mary's iPhone

We have a plan...

The surgeon, Dr. Brendan Vesser, stopped in and spent quite a bit of time with us.

The bottom line is a planned laparoscopy at 7:30AM Saturday morning in the OR. However, if the ED has a need for surgery for a life threatening situation, Mary will be bumped until the OR is available. Remember, at Stanford they don't have an Emergency Room, they have an Emergency Department. After all, we all know what ER and ED stand for, don't we?

The diagnosis? Not clear. It could be this or it could be that. In other words, Mary has presented Stanford with a unique situation that they haven't seen before. Dr. Vesser is hopeful that what we have is a common problem masquerading as an uncommon problem. In other words, a sick gall bladder causing a bunch of symptoms such as infection of the hepatic ducts that make it appear much more complex than it really is.

Of course, the doc gave us all the warnings

1. It may be a simple gall bladder removal.
2. It may not be a simple gall bladder removal.
3. If it is not simple, its gonna be complex. Really complex. The could be's went on for a good 10 min or so. I think he covered all the possibilities.

The reason Dr. Vesser is on the team is that his practice addresses complex hepatic and cholangio surgical techniques. He is hopeful that he will find a simple situation--remove the gall bladder and that's it. But, if it is more than that, he has seen and worked on any number of complexities and his skill and experience is just what we need. He said that if it gets complex, he'll interrupt surgery and come out to confer with me--for permissions of course. I don't no nuthing bout curing abdominal problems, Mzz Scarlett.

So, I am going to head out a bit early tonight so that I can be back here long before 7:30AM.

This is likely to be my last posting today.

Pat

Back in her room

Mary is back in her room. She is really loopy and wonky from the happy juice used for ERCP #4. She is on an IV and has had her vital signs taken. From there, she rolled over and went to sleep. I may not hear from her for hours.

Nevertheless, Dr. Banerjee said the docs were conferring--when and where I don't know--and Dr. Vesser may persuade the team for the laporoscopic gall bladder removal tomorrow. We shall see. Given we saw Dr. Vesser late last night, I'll hold on for a couple more hours on the chance I may be able to talk to him.

More later,

Pat

ERCP #4 is done

When you know where to sit to intercept the doctor as he walks from place to place, you've spent too much time in the hospital.

The 2nd stent went in and he said the whole stent procedure took about 3 minutes. I haven't seen Mary roll by from radiology, where they perform the ERCP, to Endoscopy, where they clean her up. I hope they haven't taken her directly to her room. I'd better check.

Dr. Banerjee said there is an active discussion amongst the team on what the next steps will be. The surgeon wants to go in and take out the gall bladder right away because it is blocked and bloated. Dr. Banerjee explained that the nerve sensors in the abdominal cavity can only feel excessive stretching so Mary's abdominal pain could be from a distended gall bladder or from distended ducts (hepatic, cystic and bile). Removing the gall bladder removes the gall bladder and the cystic duct and given 2 out of 4 are gone, it should allow her to feel better.

The GB surgery is being proposed as laporoscopy. I encouraged Dr. Banerjee to vote on the side of "taked it out now" and I think he heard me.

As for the cause of this problem--the constricted hepatic-bile duct--that is still not certain. Not all the test procedures and interpretive results are completed yet. The team hopes to pull them all together within hours. And, one theory, remember, is that the cystic duct has a stone that is impinging on the hepatic duct and creating this problem.

More later,

Pat

ERCP #4 Has Begun

Dr. Banerjee has started ERCP #4. He'll put in two stents this time, similar to the configuration she had from Dr. Lin at Good Samaritan. I walked with her to X-ray and left at 4:15PM. This is no waiting area there.

I have just grabbed lunch (I know, its a little late) and will head to the Endoscopy waiting area to...to...no don't say it!!...to wait! The Endo waiting area is also an ATT signal free zone (no bars!) but the wifi does work.

Dr. Banerjee said the prelim results from the MRCP and all the other tests done in the past day and one half are still inconclusive. Of course, the surgeon wants to operate, the Endo guy is in Mary's tummy as I write this and the internal medicine docs keep writing down everything Mary says but I haven't heard anything back from them. I guess they have to internalize before they can annunciate, eh?

More later,

Pat

Still waiting

Stanford is opening a new endo unit this summer. This one is crowded and out of date. Heck, the copy machine is located in what was a shower stall. I've never seen a ceramic tiled copy room before.

Dr Banerjee has been in and out several times. He too is frustrated by the delay.

Mary, on the other hand, has been sleeping soundly from the 1pm fentanyl shot. She doesn't know how long the delay has been.

They are rolling her out now.

Pat

From Mary's iPhone

Delay

The procedure room is running late, about 90 minutes. Mary's 3pm looks like a 4:30 or later.

We are in Endoscopy. No ATT service in this immediate area. I'm using wifi to connect right now.

Pat

From Mary's iPhone

We are back in the Endo area waiting for ERCP #4. The prelim results from the MRCP shows she needs 2 stents so that is the plan.

As for next steps, the team needs to huddle to set the plan. More news soon--I hope.

Pat

From Mary's iPhone

Early afternoon

Nothing has changed and I am just waiting. I thought I'd answer or comment on questions I've been getting via email.

• Milt suggests its too bad "Dr. House" doesn't really exist and work at Stanford. Interestingly, last night in the middle of her loopiness, Mary said, "I sort of wish I'd see Dr House walk in because my case is just weird enough to cause him to be interested." That's how we know she is loopy, she does know better.
• Ingrid wants to know how she can help. As do Jim, Terry, Tom and many others. First, I want to thank all of your for your offers of help. You don't know how much Mary and I appreciate it. When we have a need, I will definitely ask. Thank you again. For example, last evening, our friend and neighbor Mary (MOR) fed the dogs near their normal dinner time (7PM). I didn't get home until 10PM.
• Of course, having Lara (Mary's daughter), Tim and Daniel for Easter weekend was a blessing. Lara did great service in the kitchen and everyone pitched in to help. Lara stayed a couple of extra days and that was greatly appreciated. I went down hard with a cold on Friday and have been keeping my distance from Mary since then. Lara arrived Friday, set up shop and made things work even though I was pretty much a lump most of the time she was here. Thank you!
• Scott and Riva both have recipies for chicken soup that we want to try. As we get closer to discharge, we'll ask them to fire up the stock pots!
• Father Patrick from St. John's sends his love, concern and prayers as do many friends such as Mary's farmer buddies, Steve, Mick, Joyce, Bernie and the rest of the gang. We've even recieved email from Graz in Bali and Tom in the Marshall Islands.
• Mary's sister, Reenie, purchased a one way ticket from Duluth to San Jose for Thursday this coming week. Between her tons of vacation and sick time, she is willing to pitch in for a long stay (if necessary) until Mary gets stronger.

Mary fell asleep with the pain and nausea meds, as expected. The nurse just stopped in and informed us that they do want to do ERCP #4. She agreed to ask a doctor to come in and give us the decision info as to why they want this ERCP. I'd hate to see Mary under anesthetic again if she doesn't need to do so.

Pat

Friday at noon

As I wrote yesterday, Mary has a wonderful room and a floor to ceiling window looking out on a secret garden. There are flowers in bloom and the sun has a very nice effect on her room.

She came back from her MRCP (MRI) at 12:15 or so. The results of that procedure plus all the other stuff they did yesterday will lead to a decision for yet another ERCP (#4) currently scheduled at 3PM. This timing is a function of the ERCP facility being available rather than any magic decision time.

They have added dextrose to her IV to provide some energy. She has not eaten since Wednesday morning and her blood sugar level was low. Lack of food for several days can cause that!

She is not in love with the MRI/MRCP system. Hard board to lay on in a tunnel while the machine bangs and bongs. Mary has just decided to ask for some pain and nausea meds given the aftermath of the MRI process.

My assumption is that we shall see some doctors show up soon as they make the decision to perform ERCP #4. I'll post as soon as we know.

Pat

Friday Morning

It turns out the MRCP did not happen last night.  CT scans and MRCPs have a procedural requirement that the patient be admitted and not from Emergency.  So the CT folks scanned Mary on her way to her room because, technically, she had been admitted. At that point the MRCP folks couldn't find her because she had been kidnapped by CT.  So, they'll run the MRCP scan this morning.  

Here are some MRCP links. 

1. Really Technical
   
2. Less Technical
3. MRCP for Dummies

Or, do what I did and put "MRCP MRI" into your google search window and read on! 

I did talk with Mary this morning. She had sleep like a log which is the first good sleep she has had since Tuesday's ERCP.  They have rewritten her orders to put her back on fentanyl--again a protocol issue between what the ED was giving her and standing orders in the surgical bed wing.  She has asked for her iPod so she can listen to books on tape.  Mary's son Tim left an iPod Touch loaded with movies for her and she has asked for that too.  She is feeling better, obviously. She did not ask for the crossword puzzles and refused them when I asked so she is not near her normal functioning level. I mean, the day doesn't start without a good crossword puzzle. 

I'll be there about 10AM and provide an update thereafter.   The day's plan is the MRCP first and they have reserved another ERCP slot this afternoon.  Recall, one possible source of the current problem is that the stent has slipped out of place since Dr. Banerjee placed it on Tuesday morning.  The MRCP should show if it has moved. 

Please, please feel free to sent emails if you have questions. I'll either answer directly or on the blog.  Email to "pat - mary [ a ] lamey - hughes . com" by removing all spaces and replacing [ a ] with @ symbol.

That is all for now. 

Pat

Its 7 pm and all is well

Mary is in her room. Amazingly enough, the surgeon, Dr. Visser, was here as we rolled her in from her CT scan. He was refreshingly frank and open about the simple fact that they don't exactly know what is causing this. His job, if it is necessary, is to go in and fix the plumbing once a diagnosis is agreed and they have a proposed fix.

He told us that Mary would see a ton of physicians over the next few days (and I thought she had seen a ton since we arrrived this am) all trying to figure this out. He said Dr. Banerjee is calling in all the appropriate discipines and at Stanford, they all make an effort to meet the patient. He also put the whole range of diagnostic outcomes on the table but put just a little more emphasis on a non-tumor cause--YESS!!!

Also, as we arrived, the MRI (MRCP) folks called looking for Mary. She is going for that process in a little while. They are not wasting time trying to capture all the info they can for a proper diagnosis.

They are providing IVs to keep her hydrated, fentanyl for pain and either zofran or phenergan for nausea.

As an aside, this is a large room for two patients. Mary is in bed B and she has a floor to ceiling window wall looking out at a very nice secret garden. She is asleep as I write this and they'll wake her shortly to take her to MRI. The charge nurse for the floor just stopped in and introduced herself. A very nice lady. Mary is sound asleep so she missed her. I am sure she'll meet her later. The duty nurse just rolled in as nurses do with their wheeled computerized carts. Its shift change time

Our friend Mary (aka MOR) stopped by after work today. We met in the cafeteria because getting into Emergency in Stanford is not easy (security procedures) and the space is really tight. She agreed to feed the dogs tonight a lot earlier than I will be able to do it.

While Mary is having her MRCP, I'll head up to the cafe to find a bit of dinner. They tell me the vending machines are wonderful if the service is closed. If we had arrived earlier, they would have allowed me to order a dinner.

That's probably it for tonight. Catch you on the flip side.

Pat

Evening approaches

Mary is still resting comfortably. The wheels of medicine are starting to turn. She has met doctors from the internal medicine department (2), surgical unit (1), GI unit (1 plus Dr. Banerjee), ER (known as ED for Emergency Department) (2) and a bevy of various staff residents--the benefit (or price) of a teaching hospital.

The x-ray is done and they are taking her for a CT scan as I write this. I missed that in a prior posting and they want the CT scan before moving her to her room. The MRI (MRCP) scan will be done sometime tomorrow, it appears. She now has two IVs in place because if they need to put stuff in her in a hurry, two openings are better than one. After the CT scan, she is not returning to Emergency. She is being taken directly to her room. I'll post when I arrive there.

Also, we are waiting to meet Dr. Brendan C Visser, the surgeon who is at a different facility today and will be back at this campus later tonight or in the morning.

Mary's vitals are good, the fentanyl is working great and she is in pretty good spirits. I think she is looking forward to a room rather than this ER space.

More later,

Pat

The good doctor just stopped by

As a quick summary, Mary is in pain but different than what she felt before ERCP #3, the bilary system is not functioning all that well, the new stent may or may not be helping or perhaps even hurting and the Stanford pathologists gave the same answer about the new ERCP#3 brushings as the Good Sam pathologists did for #1 and #2--inconclusive. Pancreatitis is off the table because the blood tests this AM DQ'd it.

So here is the plan:

1. An x-ray to see if the fluorescopy materials are still in the gall bladder. These were from ERCP #1 and #2 over two weeks ago. Will be done today. If the xray fluorescent material is still there, then her GB is not draining and may be enlarged causing stress and pain. Or, the fluorescent material could be causing a GB infection.
2. (Late Edit) A high resolution CT scan of the affected area. To be done today.
3. An MRCP which uses MRI technology to image the Cholingio (i.e., bile duct work and associated parts). Today if at all possible and highly likely. This is the best non-invasive imaging technique available. Because its MRI based, it doesn't need the fluo materials which are not as effective if the cystic duct is blocked, for example. In Mary's case, the cystic duct is blocked so the MRCP should give the image of the critical area they cannot get with the techniques used so far.
4. Admit Mary to Stanford. Today for sure.
5. Introduce Mary to the surgical team. Today. I didn't catch the surgeon's name but when I do I'll post his/her Stanford URL.
6. Reserve the available ERCP slot for Friday afternoon if the stent needs to be replaced. Reservation made. If surgery isn't scheduled until Monday or Tues, and the stent is suspect, they may install a new one so she can make it thru the weekend--as an inpatient.
7. Obtain the path results on the biopsy from ERCP#3. Monday or Tuesday.
8. Prep Mary for surgery. TBD but in 3 to 4 days. The doc said being an inpatient will accelerate the decision for surgery to a few days vs the few weeks it takes as an outpatient.

The bottom line is that the pace is picking up. They've done blood tests and ultrasounds this AM already and are planning the x-ray and MRCP this afternoon. The blood tests DQ'd pancreatitis. The ultrasound shows a possibly enlarged gall bladder. It did not show the top of the stent so that leads to a suspicion that has moved.

Mary is resting comfortably. The fentanyl and nausea meds are keeping the pain away and are, as she puts it, making her "loopy".

That's all for now.

Pat

We are back at Stanford

In the ER. Mary's pain level started to increase late yesterday aft. A call to the doc was a recommendation to come in if the pain had not lessened by morning. The pain increased and we arrived just before 8.
First blood tests are back and the presumed pancreatitis was not confirmed. The GI specialists have been notified and an ultrasound has been ordered.

However, Mary is back on fentanyl and nausea meds and is feeling much better. Vitals are all good.

More later,

Pat from Mary's iPhone

Late Wednesday

The house is quiet. Lara, Maddy and Emma left earlier today and so that leaves the two dogs, Mary and me.  Mary was sad to see Lara go especially, she said, because I am incapable of preparing food with decent taste. 

Mary is suffering from a pain in the stomach area, different than she was feeling before the procedure yesterday.  We called and talked to the doctor on call. He suspects "post ERCP pancreatitis" or infection of the pancreas caused by the endoscope forcing its way up the ductwork to the liver area.  The cure is a clear liquid diet and bed rest. However, if it is still painful by morning, they may recommend we bring her back in to the hospital. We shall see. 

No word on next steps from Stanford. Mary's sister Reenie will arrive a week from today (it is after midnight, I just realized) and hopefully Mary will either a) have an appetite or b) be pre or immediately post the expected surgery.  

Pat 

Wednesday Afternoon

Mary is finally coming out of the effect of the happy juice. Her body just doesn't like that stuff. We'll have to give feedback for future procedures that they must find a better way. Mary didn't have the same degree of difficulty with ERCP #1 and the stuff they used for #2 was a breeze. For this #3, it really put her down for about 30 hours.

Mary is eating, drinking and generally is awake now. The food is staying with her, no problem there. And, she said there is no pain at the moment which would possibly mean the new stent is not causing the same difficulty as the old pair of stents. However, the pain may be from the gallbladder and cystic duct and could emerge at any moment.

Based on Mary being in pretty good shape, Lara, Maddy and Emma headed home to Pasadena just a few minutes ago. They've got about a 5 hour drive so dinner will be a bit late tonight.

No word from Stanford on next steps.

Pat

Tuesday Evening

As we've known forever, Mary and happy juice just don't like each other. As we walked in the door, Mary put on pajama's, crawled into bed and fell asleep. She was awake about 6pm so she drank some tea and tried jello but the jello was distasteful. She then tried one mini-Popsicle and that both tasted good and stayed with her. She then rolled over and has been resting and sleeping as her system tries to shed the happy juice.

She said she was feeling discomfort in the stomach area but she diffuse and not specific so she wasn't sure if it was from the happy juice or from the stent. We'll know more tomorrow.

That is all for tonight.

Pat

Bringing her home

from my iPhone

Mary is still recovering

 

They just brought her back to the Endoscopy department from recovery.  They called me in, expecting I think, that she would be ready to go. Unfortunately, the happy juice has knocked her down hard again.  The nurse gave us a few minutes and then realized she was in no condition to be released. I was banished back to the waiting room while sleeping beauty gets over her bout with whatever happy juice they used this time.

 

Let see, that first hospital hour lasted about actual 2.5 hours so my guess is that we're looking at another couple of hours before we head home.

 

Pat

--
Pat Lamey
www.lamey-hughes.com  <---->  Los Gatos, California, USA

She is out and in recovery

Doc Banerjee stopped by. The procedure is done, fairly straightforward. The biopsy reports from his conventional brushing will be done in 2-3 days, the path reports for the material taken by the super duper scope will take 5-7 days. (Note, the super duper scope did get up to the blockage--hooray!) He recommends and is scheduling surgery next week and the exact surgical procedure will depend on the results of the path reports.

He then described the appearance of the constriction--it is smooth, not rough or granular like a typical bile duct tumor. Taking that with Mary's symptomology of pain preceding jaundice by several days and it points to a higher probability that this whole thing is an infection, not a tumor (with a tumor, jaundice typically appears long before pain). Of course, he is not certain until the path reports come back and may not be certain until after the surgery is done.

He removed the two stents as he said he would and replaced them with a single and larger stent. The constriction is below the joining of the left and right bile ducts so he didn't see a need for two stents.

The gall bladder had not yet drained from the ERCP material of two weeks ago (meaning the cystic duct is blocked) and that gives another clue. He observed that the cystic duct may be impinging on the bile duct and they are pinching each other off. Why? Because there might be a gall stone (hidden in all the pictures) in the cystic duct at the pinch point. The stone's proximity may be the cause of an infection or an infection-like behavior in the bile duct while it simultaneously creates a blockage in the cystic duct. How's that for a twofer?

Our girl is in recovery and is expected down here in the endoscopy department in about an hour (hospital talk for we have no idea but you want us to tell you something.) As some point after that (another hospital hour?), I'll be taking her home.

And, in this particular waiting room, there is no phone service (ATT). However, Stanford runs a guest network and I am communicating by wifi.

That's all for now!

Pat
--
Pat Lamey
http://www.lamey-hughes.com/ Los Gatos, California, USA

90 minutes is not 90 minutes.

No news. But, amazingly a high school buddy's spouse was having a
routine endo done here today. So we killed the waiting time in
conversation. Tom Emerson and I are both great conversationalists as
it turns out! Go figure how two St Paul Cretin grads end up in up in
the same waiting room half a continent away 40 years later!

Pat from Mary's iPhone

7:45 start

And an expected 90min procedure. We met both Banerjee and the happy
juice doc and at 7:45 they rolled her in.
Pat from Mary's iPhone

It has started

We arrived in plenty of time and they just took her in to put her
through hospital torture. I'll be called in after she is poked,
probed, dressed and IV'd.

Pat

From Mary's iPhone

We're ready

The rest of the day at Stanford was uneventful. Mary is properly documented, blood tested, EKG'd, poked, prodded and otherwise considered ready for the procedure tomorrow.
Check in starts at 6:30AM and she is scheduled for the first slot of the day at 7:30 for a 90 minute procedure. A few hours in recovery and then they are going to send her home.
Next steps will come as the result of the pathology reports from the biopsy material. We do not have a schedule for this but we hope its about 24-36 hours like we experienced at Good Sam.

Pat

Dr Banerjee is very nice, calm and you get a feeling of solid
confidence. He discussed all the options and scenarios and spent quite
a bit of time with us. Mary is off having blood tests done and we see
the happy juice doc at 3pm.

Pat

from Mary's iPhone

On our way to Stanford

Mary got up with the rest of us, said goodbye to Daniel (going back to Fort Bliss, El Paso) and Scott (going back to work in SoCal), ate breakfast, read the paper (no crossword) and headed for the shower.

She is resting now and we'll be leaving in a few minutes. Her first appointment with the GI specialist is at 12:30 and with the anesthesiologist is at 3:30PM. She has to go through the check in procedure so we have to be there shortly after 11AM.

You can expect an update about 5PM PDT.

Easter Sunday

We had a blast!

Mary loved being with her kids and grandkiddies. And our friends Ingrid and Mary R (aka MOR) joined us for our early Easter dinner as well. The day was really full.

The day started with three young ladies finding wonderful Easter baskets on the dining room table--and a carrot partially eaten by the Easter bunny. After the initial sugar intake, we then went on an Easter egg hunt in the front yard where lots of eggs had been left by the Easter bunny! Lara had fixed wonderful sticky buns for breakfast and I fired up the latte maker so the adults got their sugar shot with caffeine--if they hadn't stolen anything from the kids yet.
After everyone was cleaned up and in their Easter finery, the girls put on a series of fashion shows for the adults. Mary was out enjoying the wonderfully clear and warm day on the back deck so we held the fashion shows there. MOR arrived and shortly thereafter Ingrid arrived. Ingrid brought two of her pet rabbits for the girls to pet and have fun with. Our dogs were disappointed, they didn't get anywhere close to the bunnies. (Everyone was sure the dogs were thinking Ingrid was offering a really special Easter dining treat!)
Lara was the star of the day with a fantastic Easter dinner. An asparagus-pasta cold salad, a non-mayo coleslaw, marinated bbq chicken and later, a wonderful lemon tart.
Ingrid and MOR pitched in with Lara to bring sense and order to the kitchen as they finalized their contributions of mashed potato and dinner rolls. I had been trying to keep up with Lara and keeping the kitchen sort of in order but I fell behind with all the other host duties so Ingrid and Mary were a blessing. I bbq'd the chicken and didn't make crispy critters nor serve salmonella.
At that point, Tim and Charli had to head for their airplane so we bid them goodbye.
Uncle Daniel, Lara, Scott, Madelyn, Emma and I took a very nice walk around the neighborhood...well, the girls rode their scooters with helmets and kneeguards. When we returned to the house, Grandma Mary was on the front stoop awaiting our return. It was nice to see her there.
In the morning, I am taking Daniel and Scott to their 9AM-ish flights. Mary and I will leave about 10:30 to head to Stanford. From there, we are in the hands of the specialists.
More tomorrow.
Pat

Saturday Afternoon

We are awaiting Scott's arrival at SJC about 6PM.

Lara and Emma are at the store shopping for all the Easter meal goodies. Daniel just made a quesadilla for Mary so she could take her afternoon vicodin. Tim put Charli down for a nap. The oldest granddaughter, Madelyn, caught a lizard with her Uncle Daniel in the front yard and now Al is safely ensconced in a glass bowl for the girls to observe. Everyone except Mary and I spent the early afternoon at Oak Meadow park. My cold still sounds bad to everyone but I am definitely feeling better than yesterday.

In other words, its a perfectly normal Easter weekend with the exception that Mary is not running the kitchen or food program. Frankly, I think it has been a great idea to host all the visitors. Clearly, Mary has been distracted a bit as she plays cards and watches shows with her granddaughters. And, I have been able to relax as Lara, Tim and Daniel lend a hand around the house.

That's all for now.

Happy Easter!

Pat

Friday Morning

Mary's oldest, Tim, arrived yesterday from Tucson with his daughter, Charlize. Thanks to Ingrid, they made it from SJC to the house in comfort and style.

I got home from work about 7 and we ordered pizza. Mary did eat a couple of slices so the appetite is still good. Mary says the pain runs from a 2 to a 6 and this morning before the meds kicked in it was 3 to 4. I wish it were zero but it is what it is.

Daniel, the youngest, arrives from Fort Bliss, El Paso at noon. Mary's daughter is driving up from Pasadena and will get here when we see her.

Frankly, its nice having family here. Mary has trained her kids well so they help with shopping, running errands, cooking and cleaning up the kitchen and that is very nice.

Just to make life interesting, I have come down with a horrible cold. So I am staying away from Mary as much as possible. I don't want her getting a cold on top of everything else!

That's all for now.

Pat

A much better day!

Mary is much better today. The Benadryl seems to have greatly reduced the nausea and allows the Vicodin to do its job. She is eating, holding her food and very awake and alert.
We'll be picking up Mary's files from Good Sam on Friday so we can take them to Stanford on Monday.
Tim and Charli arrive tomorrow from Tucson. Daniel flies in on Friday from El Paso and Lara, Madelyn and Emma arrive from SoCal by car sometime on Friday. Scott arrives Saturday evening from SoCal. We're setting up the house so Grandma can have her quiet space while all the activity is ongoing.

I expect fewer blog entries over the next few days. We'll pick up the pace on Monday when we get into the Stanford system.

Pat

Wednesday is a bit better

The over the counter meds seems to have done the trick for Mary's nausea. She still sleeps after taking the vicodin but she doesn't have the nausea she was suffering yesterday. And she is holding onto her food.
What over the counter meds? Well, she had trouble holding down her meals by 7pm last night. So I called the doc and got his on call physician. He suggested that an over the counter med might provide relief from the nausea induced by the vicodin. I did a quick trip to Walgreens and picked up the Benadryl. Mary took one and went back to sleep. About midnight she woke up and was hungry so we tried a simple toast and tea and she was ok with it.
She was feeling good when she woke up this AM and ate the breakfast I fixed for her. She said during our call today that she was definitely feeling better and the Benadryl was clearly helping the nausea.

We are now preparing for the arrival of Tim, Lara and Daniel with grand girls Madelyn, Emma and Charlize. It should be a great Easter weekend!

Pat

We have a new plan

Stanford called back later today and offered a slot on Tuesday the 14th, a full 8 days earlier than the prior appointment. Mary said yes, she would take it. So she meets the GI specialist, Banerjee, on Monday and now the anesthesiologist after that on Monday. We then head back up on Tuesday morning for the super duper ERCP. Frankly, I find this to be great news.
Mary didn't have a great day today. She had a pretty bad nausea that may be a side effect of the vicodin. Right now she is sleeping and I hope this will pass soon. She needs to eat and to drink as we all know.
On top of the medical problem, Little Dog aka Layla, Wiggles or 'Why am I yelling at a deaf dog' decided that the breakfast-in-bed tray was more tempting than Mary realized. At some point during the day she found Wiggles up on the furniture gobbling down the leftover strawberries and brown sugar. She may be cute but she is also very devilish.

That is all for now.

Pat

We have a plan!

Mary is scheduled to see the Stanford GI specialist, Dr. Banerjee, on Monday the 13th. She is also scheduled with the anesthegiologist on Wednesday the 15th. Fortunately, this is during one of Applied's shut down weeks so I am free to run her to Stanford for these appointments.

All of this is in preparation for the super duper ERCP on Wed the 22nd. I'll be clearing my calendar to take her for the 6:30AM admittance with a 7:30AM procedure.

Its amazing the emotional release at having a plan instead of waiting and not knowing.

As for Mary's condition, my opinion is that she was more alert and looking more comfortable than she has been in a long time. She continues to optimize the Vicodin cycle so she doesn't hit the horrible pain downers.

Our friend Ingrid lent us her breakfast-in-bed tray so I can deliver and Mary ate a nice breakfast. Before breakfast, she even went out to get the newspaper from the driveway--when Mary wants to do her crossword puzzle, she wants to do her crossword puzzle! Mary did say it seemed strange to be asking me to prepare food. Not only does she ask, she has to tell me where the various supplies are. But, hey, we are managing.

A little secret for those who haven't visited our kitchen. Mary had a instant boiling water tap installed during the remodel. Anything that needs hot water (tea or oatmeal) is a simple flick of the wrist. What I am trying to say is that I haven't had to learn how to boil water and Mary is eating well!

As I left this morning, she was sitting up in bed, had finished most of her breakfast, had her pencil, crossword puzzle and the rest of the newspaper, TiVo remote, TV remote, Mac laptop, cordless phone and iPhone spread around bed. And the two dogs, Shawna and Leyla (aka Wiggles or "Why am I yelling at a deaf dog?") were camped out on the floor and keeping a watchful eye (food might be dropped). If she weren't sick, it would be a pretty nice morning routine!

Pat

Monday is done

Mary had a good day overall. She has figured out when to take her pain pills so they kick in before it gets too uncomfortable.

Mary ate everything put in front of her today so her appetite remains strong.

As for the Stanford connection, we both called the scheduling person and I also contacted the referring doc from Good Sam. We got the scheduling person's voicemail and it promises a response in 48 hours or less. The referring doc was out today so I will try again tomorrow with his office.

We are expecting Mary's offspring and grandkiddies this week. They'll start arriving on Thursday for Easter weekend with Grandma.

That's all for tonight.

Pat

A beautiful Sunday here in Silicon Valley

Mary is doing much better overall but she does have times when the pain is acute. She is taking the pain medications and after each dose tends to sleep for a while. She is eating well with no difficulties and does go for hours at a stretch without any problems.

She is generally weak from the last two weeks of being sick so I am not surprised that she is up for a while then rests for a while. Heck, she did the crossword puzzles from Thursday and Friday's local paper (LA Times is the source she tells me) and she did watch our TiVo recorded episode of "The No 1 Ladies Detective Agency" and, of course, the results from American Idol. I guess TiVo is both a blessing and a curse, eh? TiVo didn't record Tiger's victory last week for which I am not happy!

For those of you in less than warmer climates, I've posted the weekend pictures from Mary's garden. Spring has arrived here and I know she'd like you to enjoy it too. You can find the pictures by visiting our home page and clicking on the link to our pictures.

Again, we appreciate the calls, comments on this blog and email. Thank you for your caring and support.

Pat

And the Stanford doctor is...

Subhas Banerjee

Because he has a profile on Stanford's public website, I've copied it to make it easy for you to find.

http://stanfordhospital.org/profiles/stanfordhospital/physician/Subhas_Banerjee

The division at Stanford is Gastroenterology and Hepatology

http://gastru/ohep.stanford.ed

Pat

Mary is home

We came home a bit a go. Mary is comfortable and eating a normal lunch, if you can call anything I make normal. Let me say that she sat in the Master and Commander chair and I prepared the meal under close supervision. At one point she got out of the chair to chop the onion and olives because she suffered so much watching me chop celery.


The doctor called and gave Mary all the info about Stanford. We know the Stanford doc's name and his scheduler's phone number so we are on our way. Our doc said that he thought the next available would be after Easter but we won't know for sure until Monday.

All in all, things are much better than when she left the house last Saturday.

Thanks to everyone for the support. Its good to know you are all pulling for her. Calls and email will work just fine to contact us.

Pat

Saturday morning and real food!

Mary said she slept well and long. The oral pain meds (vicodin) didn't cause any undo nausea. She has ordered a breakfast of cream of wheat, hard boiled egg and fruit. Good signs!

They drew blood this morning as planned. We assume that the doc will decide to release or not based on the results of the blood test. And, we don't know how long that takes.

All in all, the horrible pain and discomfort that started in Denver two weeks ago are under control. The vicodin is helping her through the pain associated with the stents. Oh, and her yellow color is fading away so that part of the plumbing is working just fine.

I slept for almost 11 hours last night. Guess I was tired. I need to feed the dogs, clean up and get over there to see our girl.

If you want to call, the cell phones are with me being charged. Calling her in the hospital is certainly an ok thing to do. If she doesn't answer, I would assume she is on a walk (another sign that she is ready to go home). I'll be there with the cell phones by 10:15.

Pat

A non-decision decision

The doctor just came by. The most recent pathology report is also inconclusive.

As a result, he has started the procedure to send Mary for treatment at Stanford. The expectation is that Stanford's advanced equipment and processes will allow them to make a firm diagnosis of the source of this problem. And, they'll be able to cure her as well.

If Mary tolerates oral pain killers overnight, they'll let her come home on Saturday. Right now the fentanyl is administered via her IV.

It can take up to three weeks for admittance to Stanford although they are hoping the process starts this week.

The thing that is absolutely clear is that the stents have helped Mary recover from the problems of last week. She is out of that unreal level of pain and looking so much better! Getting the bile flowing again is clearly a good thing! The pain she feels now is much less and the doc said it should reduce with time.

That's it from here. Oh, yeah, she ordered tomato soup and applesauce for dinner. And, she could not finish it. Her last real meal was breakfast last Saturday where I fixed her a fried egg and 1/2 an English muffin.

Pat

The waiting game

Mary is awake and alert now. In fact, she asked for our kitchen laptop and I brought it along. So she is now reading email. I don't think she has written an email yet but she is reading the backlog in her inbox.

Otherwise, we are hoping the doc swings by because she wants him to upgrade her food from clear liquid to anything else!

Pat

Friday Mid-afternoon

Mary is resting after taking another hit of the happy juice.

Ingrid stopped by and gave our girl a foot massage. Ingrid is a licensed masssage therapist and is also a great friend. I am sure Mary really enjoyed the TLC.

We are expecting to see the doc and hopefully learn of the path results.

We are back to the waiting game.

Pat

Real progress!

They let Mary take a shower this morning! 

She is feeling better, obviously. Maybe not from all the medical care but because it was her first shower since last Saturday.  Sponge baths aren't really satisfying. 

 

Pat

Friday Morning

Mary was awake when I arrived at 7:30. She had not had a pain med since 3:30 so the cycle continues to go longer. At 8AM she asked for another injection and told the nurse the pain level was about 4 (down from last night's 6). Good signs.

Mary ordered breakfast--if you can call jello, tea and shaved ice breakfast. She asked to save yesterday's paper that was in the room and is looking forward to today's paper so she can do both crossword puzzles--a sign of true normalcy.

I told her I would be back about 1:30PM. She asked me to bring the mac laptop so she can get on line--another great sign.

The x-rays were taken before I arrived so we are waiting for the path report and the radiologists assessment of the latest pictures.

When she takes the pain killer, she tends to sleep for about an hour then she wakes up. Given the ~5 hour cycle and an 8AM injection, she is probably going to be awake starting at 9AM and until roughly 1PM.

That's all for now. More later.

Pat

One more thing

This is a better image.  The constriction for Mary is just about where the pointer is showing "Common Hepatic Duct".  The doctor is also trying to figure out why the gall bladder has not drained itself of the high contrast x-ray goo from Monday and he hopes Friday's x-rays will tell us. I gather he is trying to get a good view of the cystic duct with the new pictures.  

Pat

  

Goodnight

After the doctor visits, I ran home and fed the dogs and myself (well, Subway provided for me).  I returned to the hospital to say goodnight to Mary. 

She was awake, alert and not in too much pain. Her self observation is that she can go longer between the fentanyl shots and she was up to a 4 hour cycle.  The fentanyl is injected through her IV and once in, Mary falls asleep for about an hour.  Then she wakes up and feels pretty good until the pain gets too bad. As noted, she was up to 4 hour cycle by 9PM tonight. 

The doc has ordered some more x-rays Friday morning. He said that he and three radiologists had studied all the images obtained so far (ultrasound, two ERCPs and one CT Scan) and they believe there is more to see with the pictures ordered for Friday.  

I asked him when he expected the pathology reports. He said, quite logically, that the noon Monday ERCP resulted in a report late on Tuesday.  So, a late on Wednesday ERCP should get us a report tomorrow--sometime.  

Next report will be about 9AM. Then I am off to work for half a day. 

Pat

The specialist GI Specialist visited

He drew pictures of the stents and what he did for ERCP #2. There are multiple messages.

1. Mary is not supposed to be a hero and tough it out. She should ask for pain medicine when she feels pain.
2. The two stents, one for the left duct and one for the right duct are large enough that the constricted bile duct is being stretched dramatically. That stretching is causing this immediate pain. He said the first stent went through the constriction fairly easily. The second required a lot of effort and it cause Mary to react even under anesthesia so they had to hold her down.
3. The biopsy material from the constriction taken yesterday may or may not be enough for the pathologist to get a reading. If the reading is inconclusive, then its off to Stanford and their more advanced equipment & techniques.
4. The nature of this constriction is that it has a tough top layer which is meaningless for the biopsy. The sample needs to reach under the top layer without damaging the wall of the duct. Think of a creme brulee with a really thin custard in a bowl made of paper. The technique he has available can only determine there is sugar present. He cannot reach the underlying custard without risk of popping a hole in the paper. At Stanford, there is a technique that would get a good sample of the custard without risking perforating the paper bowl. (My interpretation of his description but he agreed--sort of--and didn't roll his eyes too much.)
5. He was also surprised to find the fluid he used on Monday to highlight the gallbladder for the ERCP was still visible in the GB for Wednesday's ERCP. A normal GB should have purged that out in less than 48 hours. GB's are known to cause pain when not functioning correctly. Bile ducts do not cause pain signals in the body. So, it may be we still haven't found the source of the original pain. But looking for it caused the docs find this constriction which is a bad thing to have and its good to find and fix early!
6. The objective now is to keep Mary comfortable while the body adjusts to the presence of the stents and re-initiates the flow of bile.

In addition, Mary went almost three hours before asking for another does of pain meds. At the end of the period when the meds had worn off, she said her maximum pain was down to about a 6 on a scale to 10. Earlier today is was a clear 9 or 10 out of ten. The doc was not surprised by the pain nor by the rate of things being less painful.

The brought a food tray and Mary ate a few spoonfuls of jello and a few sips of tea. Then she took her pain med shot and has now fallen asleep again.

That is all for now!

Pat

Its 1PM

Thanks to everyone with the calls, emails and instant messaging. The support is really appreciated. If you want my IM addresses, send an email to pat-mary [a] lamey-hughes . com (replace the [a] with the @ sign and remove all spaces). I am on Yahoo IM, AOL's AIM, Google Talk and Office Communicator (Applied employees only) and I'll send my user name by return email.

Mary is aware but in a lot of pain. The nurse asked for and got authorization to increase the pain medication. The IV is providing liquids so she produces urine at a regular clip. Mary is lying on her left side and that allows her to see the clock on the wall. As she just got back into bed after a bathroom run, she noted it was 10 more minutes to go until her next painkiller injection. This seems to be her focus today--obtaining her pain meds on time. She is not allowed any foods or liquids by mouth. Its a rough day for our foodie.

My cousin, Dr. Mary Jo, called and we spent some time discussing the situation. Today's pain is not unexpected. Stents often do this, especially where her's are located. The key is the readings of the metrics on her liver performance and other key measurements. For example, her most recent BP, pulse and temp readings were all A-OK. In fact, the BP was the lowest we've seen since she checked in.

As for next steps, it depends on the pathology reports. As Dr. Mary Jo says, you cannot hurry those, it takes a fixed time to get valid results and I must learn to accept this situation. She suggests I learn patience and calm while waiting for those irritatingly slow, unbelievably rude and monsterously inconsiderate pathology docs to hurry up and get their jobs done!

Dr. Mary Jo suggests there are several diagnosis for what is transpiring. However, until the path reports come back, the best thing to do is simply make sure Mary is comfortable. Dr Mary Jo also provided an assessment that the steps being taken now are the right steps.

Our Easter plans have been adjusted. Instead of meeting Mary's kids and grandkids in San Diego, Tim, Daniel and Charli are flying here on Thursday next week. Lara and the girls are going to arrive also on Thursday but possibly Friday. Scott, being squeezed by his current assignment, is going to do a fly in Saturday, fly back 1st think on Monday. Mary's sister, Reenie, is also chomping at the bit to get out here from Duluth. (That maybe more due to her secret desire to experience spring in the month of April instead of her normal June.)


The nurse just gave Mary her 1:20PM fentanyl injection. Our girl is feeling a bit better. Unfortunately, she is limited to every 2 hours and the effect doesn't last quite that long.


That is all for now--oh, you want to know when the doc will come in and fill us in, don't you? Well, so do we.

Pat

Thursday midmornig

Mary is in quite a bit of pain. She is just lying on her side waiting for the next shot of pain meds.
Those are due at 11.

No doctor visit yet. I am anxious to know how her morning blood tests came out. If liver enzymes are On the way down, that is a good sign.

If not, we'll need a whole new plan.

And, the biopsy results are pending too.

Pat

X marks the spot

This is a diagram of the bile duct system. Mary's blockage is above the point where the Gallbladder joins the main branch, marked here as "Common Bile Duct." The Doctor inserted two stints, one in each branch above the "Common bile duct" junction.

Amazing they can do this work by sticking a device down a person's throat, into the stomach, find the little hole in the intestine and then snake up the ductwork to insert stents! Now we just need the bile to flow so her plumbing can get back to normal.

ERCP #2 is done & Mary is back in her room

The Doc came out and found me this time, but then again, I am in the middle of the traffic flow and he'd have to be blind to miss me. Besides, I would have tackled him if he went the wrong way.

The procedure is done and he feels he got lots of material for the biopsy. If not or if the biopsy is not conclusive, he recommends going to Stanford because they have some new super duper technology that allows them to target and take bad guys for biopsy much better than he can.

Also, the stents are placed and now its a matter of the bile flowing and allowing the liver enzymes to normalize. We'll know more in the morning. If they are working, we can start discussing Mary's release from here and getting home--before she heads to Stanford.

Son Daniel called as I was typing this and before he hung up, our friend Mary walked in to the waiting area. So while Mary and I were talking, our girl rolled by on a gurney. We walked with her and I helped the orderly put her in bed. I asked her if she was awake after her three steps from the gurney to the bed and she said yes. However, her snoring tells me we are in for that long sleep we had on Monday afternoon--about 4 hours worth.

So at this point I am going to go home, feed the dogs and do some laundry. Call the house if you'd like to talk. If the line is busy, try back in 10 minutes.

Pat

The 2nd ERCP has begun

They came and got her about 4:40PM. I walked with the gurney to Radiology and then landed here in the Surgery waiting area on the first floor. Anyone hanging around could find me at the "B" elevators aka Surgery Waiting area. My dead cell phone is plugged into the water cooler outlet so I am not moving for a while. That strategically places me between the exit to surgery, the elevators, the rest room and the water cooler. I will be found this time!

Given she rolled in about 5PM, I don't expect to see her any earlier than 6PM and probably closer to 7PM. However, our operating specialist GI Specialist's specialist office mate stopped by just after 4PM. Mary's last colonoscopy was done by this Doc a couple of years ago. We had a nice chat.

He basically affirmed that the top priority is to get the bile duct blockage opened. Her liver is in distress because the bile cannot flow to the intestines. Today's ERCP will definitely (we and they hope) solve this problem because the stents will force the opening of the duct. The blockage is above the gall bladder junction and at and above the junction that splits into two to service the liver.

This Doc was very positive that enough material would be collected for a valid biopsy as well. He said that the specialist GI Specialist, having just visited the bile duct site on Monday and having a complete CT Scan shortly thereafter, can proceed without a lot of uncertainty and exploration to complete the two needed procedures--biopsy material and stent insertion.

As for the cause of the constriction in the bile duct, that is not being said with any certainty. Effectively, they need to get the biopsy material and a valid test before anyone commits to a diagnosis of cause.

That is it for now, I'll post when she rolls back to her room.

Pat

PS: So while we are in the hospital, we missed the local neighborhood fun. This is the neighbor directly across the street from us! My cousin John knows the late flyfisherman.
http://www.mercurynews.com/localnewsheadlines/ci_12047393?nclick_check=1

Morning Report, Wednesday

We went for a walk around the 3rd floor of Good Sam. Mary has been doing this several times a day. She is still on painkillers and inserting the stent this afternoon should allow the bile to flow freely, reduce the pain she is feeling and get her off the happy juice. Frankly, she is bored waiting for her appointment.

Mary's appointment is at 4PM but the doc said the facility might be running late if prior procedures ran long and delayed the schedule. We won't know until we know.

As for the diagnosis, the doc hopes to gather more biopsy materials during today's procedure that will give us a better indication of what is going on.

Next post at 4PM when they wheel here away (or later if they are late.)

Pat