A Sunday Surprise

Ingrid arrived to caretake and Reenie and I headed to Farmer's Market. We picked up just about any vegetable, fruit or fish that was noted on the list of high potassium content.

We'z gonna stuff that girl with 'tassium!

When we got back, Ingrid reported that Mary had eaten a sampler of luncheon meats and cheeses that Ingrid had prepared.

This is how we found them in the master bedroom, watching a TiVo'd recording of an Agatha Christie mystery. Shawna, knowing a good thing when she sees it, was collecting pets and loves from Ingrid.

And the surprise! We are using the intercom feature on our cordless phones so that Mary can summon us whenever she needs us. Reenie appeared at the morning call and found Mary on the chaise lounge (as in the picture) instead of laying in bed.
Reenie's comment, "Oh, did Pat get you up?"
Mary. "No, I did it myself!"
Reenie and I had been helping her sit up from the prone position and the rest of the movements she has been doing on her own. Having her sit up in bed is a big improvement! Yeah!!

As for Ingrid, she apparently pulled a neck muscle yesterday and is using the brace to minimize stress so she can work tonight. Thus, the collar you see in the picture.

Saturday was another good day

Again, I cannot believe I haven't posted anything today.  Then again, it was kind of a casual day. Let me first say that Mary is feeling stronger and stronger.  Today saw her walking around without the walker at certain times.  Other times, she definitely uses it.  She took her first shower without having her abdomen wrapped in Saran Wrap. And, the cleaning of the incision is now just a few minutes. There is no deep packing (insertion) of the sterilized materials, so the procedure doesn't cause discomfort.  Her ostomy bag volume of fluid reduced today from 500-800ml a few days ago to 150ml.  The doctor said that would happen as soon as we cut down the salt.  At this rate, we can probably drop the bag in a day or two and simply go to a bandage. And that would result in the full healing of the draining stoma (hole). 

Mary is eating well and now she is concentrating on foods with high potassium so that is creating variety in her eating--Our neighbor Lillian was nice enough to provide a fresh head of broccoli from her garden just before dinner last night and it has served us well! 

Our neighbors John and Gina dropped in with fresh banana nut bread.  It was a short visit but well appreciated. And, the bread was divine including the orange zest added to it!  

Mary got up about 7:30AM and we had a leisurely breakfast.  After breakfast she took her shower and then sat in one of several locations in the house depending on her comfort/discomfort of the moment.  She has progressed to only be in bed when she is trying to sleep at night and during the afternoon nap period (roughly 2 to 5PM).  She is eating everything Reenie prepares although in small quantities. Her stomach is still rather constrained, perhaps from the two weeks of fasting during her hospital stay and the very light eating last week.  We are providing a movable feast of high protein, high potassium mini-meals to make sure she is well tended to.  

Reenie and I tag-teamed the various Saturday errands.  Just before lunch, I started with Walgreen's (more pain killer prescription), bank, post office, dog food, dry cleaner, back to Walgreen's for pick up and finally Safeway for frozen items--found only in the ice cream section. Turns out Reenie was concerned about melting the ice cream so I picked it up on my way home. Lesson learned: Do not send a man out on an hunter-gatherer trip for ice cream just before lunch.  We have lots of different flavors in the freezer now!  

After lunch and during Mary's nap, Reenie headed out and hit Walgreen's for the things I forgot and then the appropriate grocery stores.  She is using our GPS so she feels invincible because the GPS is very polite and always brings her back to her desired location.  By the way, if you haven't read my little GPS Ladies story on our home page, be sure to do so. Click here. 

Tomorrow is our Farmer's Market day and we spent quite a bit of time during dinner planning the attack of the market.  Watching and listening to these two sisters plan and discuss food is simply amazing.  Talk about your mind meld!  

More tomorrow. 

The report is in

We managed to get to Stanford by the appointed hour for Mary's blood test--but just barely. We saw Dr. Visser pretty much on time at 8:30AM. The result? Overall, good. Maybe even great. Remembering we are commenting on Step 2 (getting the liver to regenerate) progress. Step 3 (all cancer is gone) comes later.

First, he said that our call to the on-duty doctor last night had him alerted to the fluid retention problem. In fact, when Mary checked in today she was 20 lbs (8.5kg) heavier than on the same scale for the pre-surgery appointment at the end of April. That is retaining a lot of fluid considering she didn't eat for two weeks of those four weeks because of surgery and hospitalization. Mary now has an appointment request with the nefrologists (kidney) for next week to look at her entire electrolyte spectrum. Today, at least, she is off the salt tablets and the recommendation is a potassium rich diet because her potassium level was on the low side. She was dancing about the termination of the salt tablets. Ok, not dancing, making motions of excitement.

Second, the incision is looking good. Reenie and I estimated it the other night. It runs about 8 inches (200mm) from the sternum to the belly button and then turns and runs about 12 inches (300mm) from the belly button along her waist to her right side. These dimensions will shrink as the fluid bloat disappers, her abdomen looks like a balloon right now. (However, not nearly as much bloat as when she was in ICU a few weeks ago.) In the incision, there were two areas of infection when we left the hospital and Reenie has been cleaning and packing those two areas three times a day diligently for the past week. Dr. Visser said it looked great and now we can switch to a once a day and a 'shallow' packing to allow the tissue to heal together in the deepest part of the wound.

Third, they called in nursing specialist with a cart of medical goodies to work on Mary's ostomy bag. Dr. Visser said that the fluid being collected in the ostomy bag is a result of a salt rich environment so as the salt goes away, the fluid volume will drop and the stoma (hole in the abdomen) will seal up. And he is happy with that scenario. In the meantime, we wanted more supplies to make sure we didn't have a catastrophy on our hands. So they called for the ostomy bag nurse (who knew?), she came in, redid the bag, gave us enough supplies as if this thing would leak for the next four months and generally was very mothodical and careful to help us understand how and what was happening. Very nice.

Fourth, we did get a refill on Mary's pain pills but the doc extracted a promise she would wean herself of off the pills.

Fifth, I did ask one of the surgical residents about Mary's path report after surgery. I wanted to know if the cancerous material was intrahepatic or extrahepatic. The answer was both but predominantly intrahepatic.

Sixth, Dr. Visser made Mary get up out of the chair and on to the examination table to see how she moved. He was very pleased with her progress and mobility. He then proceeded to remove almost but not quite all the staples along the incision. He left the staples on either side of the two infectious locations to minimize tearing.

Finally, we asked about radiation. His response was that Mary needs to heal from the surgery and given that she appears to be healing very well, it will likely be about four weeks before radiation begins.

That's all for now. I had great difficulty sleeping last night and given that Mary is taking her nap now, I am going to do the same.

Time to feed the dogs

I cannot believe I haven't posted today.

Mary is doing fine although we are concerned that the abdominal drain has finally healed up and stopped flowing. The liquid it has been producing must now learn to exit via normal channels. Because of this change in fluid flow, Mary is showing a bit of bloat and that scares us all because of the episode in the hospital with bloat and SIADH. Mary is on a diet of salt tablets, 6,000mg per day, along with all her other foods so some fluid retention is expected. Yes, we have called the hospital, yes we talked to a doctor and we are welcome to come to ED at any time but the regular appointment in the morning is probably soon enough. Reenie and I have reviewed this blog to figure out what early signs of a problem are so we can react, if necessary, in the middle of the night.

The day has been very quiet. Mary took a walk outside and did a couple laps around the crown of the hill we live on. The lots are about 100 ft wide so one lap is probably 700 feet and she did two complete laps. Bill, our neighbor, joined us as we did the laps just to say hello and provide moral support. Thanks, Bill!

Mary is eating well, spending a lot of time sitting up and in conversation with Reenie, me or her kids. She does take an afternoon nap about 2PM for a couple of hours but otherwise is awake, reading, watching TV (TiVo) and doing her crossword puzzles. Other than moving slow and easy, she is clearly gaining strength and heading to normalcy.

Right now, she is in the shower and getting all clean. We wrap her torso in Saran Wrap to make sure the open parts of the incision do not collect water. Otherwise, she is showering on her own using the shower stool I acquired after the gall bladder operation.

I am not sure if I will post again tonight. We are definitely at Stanford at 7:30AM for blood test draw and Dr. Visser at 8:30AM.

Friday isn't soon enough

We had made an appointment for 1:30PM on Friday to see Dr. Visser. His office called today and asked that we move it to 8:30AM. Mary also has to have a blood panel taken so that means we have to be at Stanford by 7:30-ish when the blood lab opens. It takes not quite an hour to run the panel and he'll want the results while talking to us, I am sure.

Hopefully, this will be a simple matter of the blood test and Dr. Visser poking around Mary's abdomen and saying things "look good." However, my suspicious mind jumped to the possibilities that he wants Mary early in case more labwork or clinic time is needed during the day on Friday. I don't think he knows any more than when we last talked at the end of last week, but who knows? The last time he advanced a meeting he informed us that Mary's path report came back positive for cancer in the lymph node. Friday isn't soon enough.

Overall it was a good day with the trip to Lake Vasona. Later, Mary walked to the mailbox to get the mail. Something she hasn't done since May 9th. Reenie made another superb meal and Mary ate the largest amount of food since the surgery. Unfortunately, it seems like its little to much for her shrunken tummy so she has been feeling stuffed since dinner.

For tomorrow we plan another outing, not as long as today because we don't have the Maids to work around. Reenie suggests a picnic lunch and that should be fun.

As for the healing process, the incision is closing up without infection due to Reenie's superb nursing procedure. Mary's abdomen continues to drain. And, Mary's pain level seems to be concentrated on the zillion staples in her tummy although I am sure there is more source of pain than just the staples.

An outing to Lake Vasona Park

We loaded up the Humette with Mary, the two dogs, and Reenie and headed for Lake Vasona Park for a walk and a sit. The trigger event was the arrival of The Maids to do the regular bi-weekly house cleaning. When we returned to the house, we had lunch, did email and phone work, a cleaned and packed the incision and then Mary took her afternoon nap.

I want to give a special thanks to Reenie who is one heck of a cook. Her husband Tom would probably say his wife is the best cook there is. I would say that too--my wife is the best there is. Good thing they are sisters and not competitive--much.

Lilian came out and said hello to Mary as we were departing. Mary took calls from both her son and nephew today and that is more phone time than she has spent in the last several days.

Looks like today is going to be a very good day.

Tuesday Late

Nothing much to report. The cleaning and packing of the incision proceeds and shows good progress. Reenie measures the progress by how much gauze she can stuff into the openings. It is down considerably from where we started.

The new ostomy bag is much improved. It has a stopper on the bottom rather than a pinching device that was tough to work and often leaked.

Othewise, we had a great dinner (again) thanks to Reenie, my exquisite BBQ skills and Mary's digital meat thermometer. No overcooked meat or fish in this house!

Mary did not walk as much as we wanted her because she just wasn't feeling up to it. But, she spent many more hours in upright chairs than she has any prior day.

I guess we are all waiting for the visit with Dr. Visser on Friday afternoon.

Pat

Minor Crisis Averted

As I noted previously, Mary did have a drain (JP) after surgery. The doctors removed it last Thursday and stuck a bag on her skin to capture any fluids. We are to simply watch the color and as long as its doesn't change, just keep emptying the bag. Well, the bag is on its last legs and they didn't supply us with any spare items. We called today and the nice nurse who eventually took our call arranged a small supply of all the necessary parts to replace the bag. I drove up to Stanford and just returned and Reenie is already working on the bag replacement.

Otherwise, the day is incredibly quiet (boring) although we see Mary making small improvements continuously. At one point she got up and walked to the next room and after she got there, asked for the walker. Until that point, she wouldn't think of taking a step without a walker because she felt so uncertain. She sat at the lunch table for a very long time before heading in for her nap so overall she is definitely improving.

Reenie did a grocery run and loaded us up for the next few days. Marge stopped by with fresh lemonade and banana nut bread and had a nice chat with Mary.

Maurice and Ingrid stopped by with a replacement pizza cutter and a fresh blanket Ingrid had taken home to wash. Mary was napping so they didn't get a chance to see her.

Monday Evening

We had a very calm day, but Mary complained that she was suffering more pain than she had the previous day. It turned out that Mary and Reenie had decided to change dispensing Mary's pain med to an "on demand" type instead of "on the clock".  Oral pain meds are not that fast acting so by the time Mary feels the need for the pain medication combined with the delay in the effect from the pill, she has a long time with some pretty intense pain. By dinner time we had changed it back to on the clock.  I stayed up for the 11:30PM dispense so Reenie could go to bed early and then sleep until the 2:30AM dispense.  

Mary appears to be very close to her normal self. Her facial expressions are back and her speech is fluid and not halting as it has from time to time since the surgery.  As I reported earlier, she walked a good deal today and she also sat up in a chair for extended durations. She also skipped her morning nap and only took one nap in the afternoon after the long walk and a incision clean which would have taken a lot out of her. 

The cleaning and packing of the incision is being done three times a day and Reenie continues to report the areas being packed are both clean of infection and clearly shrinking as the incision heals. Overall, the healing process is looking good.  

Chez Reenie prepared a fabulous meal of scallops, asparagus, greens and small potatoes for dinner tonight. Superb!  Per Mary's request, I started the clean up of our back deck area so we can use it for enjoying the out of doors.  I should have that finished by tomorrow.  

We've talked with all the kids in the last couple of days except for our soldier, Daniel.  He'll call when he is back in from field operations.  Fortunately, he is assigned to Fort Bliss in El Paso Texas so field operations consist of protecting the desert of New Mexico from dumb things soldiers do.  

We are trying not to do so, but already we are feeling anticipation for the meeting with Dr. Visser on Friday.  We know Mary has to be further along and stronger in Step 2 (growing the liver) but we also want to know the when and all the rest about Step 3 (radiation and chemo). 

Finally, I want to make sure I haven't created any misconception in my previous post. I talked about my paternal grandfather and two uncles whose graves we visited on Memorial day as I was growing up.  The misconception would be that they were serving in the armed forces which was not true. Both uncles died before WWII and Grampa died when I was two years old in 1949.  

Memorial Day

Its always a bittersweet day to remember those who have given so much to protect our freedom and our country. Years ago, Mary and I toured northern France and visited those famous beaches of Sword, Juno, Gold and Omaha. At Omaha, the French government has turned over the land of the cemetery to the US government as US property (today's picture). I can remember walking along the path on edge of the burial grounds at the top of the ridge looking out towards the English Channel and trying to understand the battle movements from the instructional panels mounted along the way. Suddenly it seems, the path ends and you find yourself turned towards the graves--all you can see for as far as you can see are the white granite markers for those of the 'greatest generation' who didn't make it home. It took my breath away.

As a child, I can remembering the family visiting my paternal grandfather's grave, my Dad's brother's grave and my Mother's brother's grave on Memorial Days and occasionally at other times too. I never really understood the true loss until my maternal grandfather died when I was 17. That next Memorial Day had really meaning for me--and I finally understood the loss that death truly is.

I think Israel does it in a most effective way which I experienced during one of my trips there. They have a two day holiday. The first is Memorial Day to commemorate those who have died to create and protect their country. Its a national day of mourning and of being with family. Everything and everyplace commercial is closed. You don't see many people out and about and the traffic is non-existant for being together as family on this secular day of remembering is what everyone does. The very next day is Independence Day. And that is a national party!

As for us, we had a wonderful dinner of fresh wild caught salmon prepared by Chez Reenie (picture below). After dinner, we watched a little TV with Mary sitting upright in the rocking chair. Mary and Reenie's routine at night appears to be working, at least there are no complaints. Reenie fixed a simple breakfast that appealed to Mary. Fresh fruit, cottage cheese and toasted monkey bread (cinnamon bread). I should note that we make Mary come to the dinner table for every meal so that she has some time walking and sitting up by definition. As for the rest of the morning, Mary read the paper, did the crossword puzzle and generally had a very interactive time.

We did have one moment of excitement. I was folding and putting the laundry away (none of my friends are allowed to comment on that!), and Reenie was in the kitchen when we heard Mary yell in what sounded like horrible pain. We both came running only to find Little Dog being unceremoniously pushed off of Mary's tummy. Mary has a chaise lounge in the master bedroom and until this surgery, she would often allow Wiggles to jump up and rest in her lap. Not any more! Mary said it wasn't really the pain as much as it was the surprise of finding the dog on her abdomen. Anyway, Mary now uses the borrowed walker as a fortification to block the dog's runway. Seems to have worked, no more screams.

We had a nice lunch of tapas. Well, not really. Really it was all the leftovers from all the other meals, some Reenie prepared, most from the Gourmet Dreams folks. It made for a simple lunch and Mary's taste buds were enjoying all the flavors. One of the dishes was a turkey chili, a portion of which Reenie had brought to the hospital on Friday. Mary commented that it tasted great today compared to last Friday. Our assumption is that the injections for various things have purged from her system and her taste buds are working again.

After lunch, Mary grabbed the walker and did multiple loops from her office, out on the deck, into the dining room and around again. This was her longest walk of any of them. From there, she headed for her afternoon nap where she is right now.

Bottom line is that she is obviously stronger but clearly not at full tilt yet. The progress is wonderful to see. Oh, and Reenie who is cleaning and packing the incision in a couple places reports the packing is looking very clean and the depth of the incision is shrinking noticeably so it is clear that Mary is healing nicely.

Reenie as personal chef!

Another great day--Sunday report

To make sure we had our choice of fish from the fish vendor at Farmer's Market, I ran down early and bought wild caught salmon, shrimp and scallops. Later, when MaryR arrived, Reenie and I took the convertible, top down, and went to the market for some real shopping. Reenie keeps talking about the "real California experience" whenever we drive around in Mary's car with the top down. I guess it is--but then again, I am not from Doo Loot in northern Minnesota. Hey, they had a frost last night! Oh, and Prairie Home Companion did a Lake Woebegone while we were driving home. Something about spring being late (again) and mosquitoes and deer flies that emerge so soon that spring tends to be a blink of an eye. Ah, yes, the reason I left Minnesota 40 years ago.

Thanks to MaryR for caretaking while we did the shopping. Reenie has a blast at our market. We have things now she doesn't see in northern Minnesota until later in the summer. And we have other things she never sees at all. Sort of like the kid in the candy store phenomena!

This was our regular weekend for attending the theater in San Francisco. We totally missed the previous performance. This time I was able to call in and donate the tickets.

Mary ate a pretty full lunch and her tastebuds are recovering nicely. She napped a bit and then took a shower. Reenie then did the clean and pack of the incision. I must admit, I am so grateful that Reenie is doing the clean and packing of the incision. Then we had an afternoon repast.

Chief Reenie emerged from her room in a chef's coat! She is currently consulting with the patient as to tonight's dinner. As Reenie says, she is Mary's personal chef!

Routine is fast being established

For Mary's benefit and to make sure I could sleep, I set up the air mattress in the downstairs rec room. Reenie has the guest room and we made sure Mary could work the intercom to call us in the middle of the night. Frankly, Mary doesn't need to hear my snoring right now and I was afraid I might roll over and cause her undue pain. Mary has said the pain is primarily the incision which is good. She also can have her back pain pop up (arthritis) if we don't situate her right when sitting or even laying down.

Reenie and Mary agreed to a schedule for the pain meds during the night and I haven't heard any complaints so I guessed that worked.

This morning is a routine of medications, cleaning and packing the incision and getting Mary into clean clothes. They did remove her abdominal drain and the tummy hole the tube went through is still open. She has an ostomy bag glued to her skin and until the hole heals, it drains stuff. The doctors had the stuff analyzed and its part of the production caused by the healing of the liver. As long as it stays the same color, we are simply to empty the bag as needed. When the hole heals, it is done.

Mary is able to stand up on her own. She walks with one of MaryR's walkers for safety. We'll need to get her walking around the house a bit more today but that is about it.

The acid test was our older dog, Shawna. When Mary came home from the first hospitalization at Good Sam, Shawna ignored her. She even crawled into her dog bed with her behind facing Mary and her nose against the wall. It took a day or so for Shawna to approach her and let herself be petted by Mary. After the gall bladder operation, Shawna was a bit stand offish but not too bad for the first couple of hours. This time, Shawna was at Mary's side as soon as we sat her in the chaise lounge so I guess the old girl (the dog that is) is accepting Mary's comings and goings.

Little one aka Wiggles, Layla or "Why am I yelling at a deaf dog" is her same self. Right in the middle of everything and loving all the things we drop (and don't notice to pick up) so she can have a good chew. Yucky.

Its been a long but good day

Mary joined Reenie and me at the table for dinner. Dinner, it turned out, was the veggies, salad and muffins from Gourmet Dreams combined with Crimson's to-die-for short ribs. Who knew Crimson did takeout?

It was a long day for all of us. Mary wanted to lay down for a nap about 5PM. Reenie sat down in the chaise lounge in the MBR to read and I went to the TV room to do email. We all woke up about 6:30 or so. Guess we were tired, not so much from the work but from the stress of getting Mary home and situated successfully.

Our plan for Sunday morning is the grocery run to Farmers' Market of Los Gatos by Reenie and me. MaryR has agreed to come to the house about 10:30 and be the caretaker for the hour or so it will take us to do the shopping. MaryR is part of the Los Gatos Rowing Club and she will be on the water at 7:30AM so she is helping out after her morning activities. No Purple Onion this week and perhaps for several weeks. We'll miss that routine.

Reenie is superb at cleaning and packing the incision. I am sooo glad she is here. We'll never know if I could do it but we don't need to know now, do we?

Mary is home

We had an uneventful trip from Stanford to the house. MaryR brought her walkers she acquired last year during her three surgery recovery periods (thank you for the loan) and visited a bit before she left. Mary used one walker to walk from the driveway to our bedroom. Bill came from across the street and delivered a flower. Yup, he saw us arrive and quickly arranged the delivery of a California Poppy. Thanks, Bill! Mary is now comfortably ensconced in her chaise lounge in the master bedroom and just finished a small lunch of cheese, crackers, strawberries and potato chips. (I know, the potato chips don't fit with the other, but when she started taking them off my plate, I encouraged eating even more!)

I ran down to Walgreens and got all of her prescriptions filled. The pharmacist was very nice and quickly turned the pain killer because she was already past the three hour cycle established at the hospital.

We are working on the dinner menu. It is a bit of a challenge because Reenie and I have been at the hospital full time (even longer), our meals were provided by Gourmet Dreams (and thanks to MaryR for that suggestion), and the cupboards are bare as they say. We'll figure it out.

The bottom line is that its great to have her home, she is still a patient, Reenie is here and knows what she is doing, and I am off of work this coming week so I'll provide the strong back (when needed).

Mary's coming home

Dr. Visser wrote the discharge order as a result of his morning rounds. Mary is coming home, assuming Reenie and I decide to go get her.

And, we will.

Mary insisted we get there and spring her before they serve lunch. She doesn't want to see another tray of hospital food! That tells us that our girl is feeling more like herself!

We have an appointment with Dr. Visser on Friday. The next days can concentrate on healing and on Friday we'll get a picture of the next steps.

Roxicodone can be a real upper!

When Reenie and I left tonight, Mary was sailing along in a parallel universe. Something about being "a dog pack, woof, woof!" We tucked her in, turned off the light and headed home.

The night shift nurse said there were no discharge orders posted. That would likely happen, she said, when the coven of surgical residents gather bedside in the morning, chant incantations to the electronic data system, raise their arms towards the sky and then tell the nurse, "Get her out of here!" Reenie is confident we can handle it. By we, I assume I will need to go boil water or something.

Mary did two walks today and both were substantially more than yesterday. Her appetite was gone by dinner time so we will need to let her eat all day--grazing rather than regular meals, I assume. And, they want her taking in salt to make sure we avoid the dreaded SIADH again.

We are encouraged

The entire Bertram Clan has been holding Mary in our thoughts and prayers since forever.  We will continue to storm Heaven on her behalf in hopes that each inch forward takes Mary through the coming months to recovery.

 

Hugs from Rosemary, Casey and all the many others who care.

The Wheels of Medicine

It appears a decision has been made to discharge Mary tomorrow. Perhaps it hasn't really been made but the wheels of medicine are slowly spinning up to discharge her.

The nurse is training Reenie on how to treat the infection in the incision this afternoon. The case worker stopped by at lunchtime to confirm that Mary had home care prepared and to see if we needed any other resources. Physical Therapy was supposed to be by for guidance and possible assignment of home care therapy for the next week or two.

OK, you ready for a Quirk girls hospital lunch? Remember the "hold the chicken" sandwich from "Five Easy Pieces". (Reenie has corrected the recipe.)

Mary ordered the ham and cheese sandwich on whole wheat bread. Reenie then goes into her "make it tasty for Mary" kitchen act in the hospital room. Let see if I can remember the recipie.

1. Apply dijon mustard to the top piece of bread.
2. Place lettuce on the top piece of bread.
3. Place tomato on the top piece of bread
4. Place sliced dill pickle on the top piece of bread
5. Place sliced italian sausage on the top piece of bread.
6. On the bottom piece of bread, remove the ham
7. On the bottom piece of bread, remove the cheese.
8. Apply mayo on bottom piece of bread
9. Add another layer of sliced italian sausage
10. Throw hospital provided ham and cheese into the trash
11. Cut sandwich into quarters
    
12. Present sandwich to patient.

Mary ate as much as her shrunken tummy could handle. I also had to find the "hold the chicken" scene from Five Easy Pieces on Youtube to show to Reenie. She didn't recall it!

All in all, Mary is more alert than she has been all week. She sat in a chair while eating lunch which is good for her lungs. Reenie said something about 3 walks today and that will be very good if she can do it.

Best Wishes for Mary

Dear Mary,

We sent an earlier message, but perhaps it did not go through.

We just want you to know that you have been in our thoughts, and we are so relieved that you are doing better, getting stronger and may be able to go home soon. We are so grateful for the blog and updates.

Take care and best wishes.

Your farmer's market friends,

Donna and Dan

Difficulty in posting?

I've heard some of you are having trouble posting comments. Here is a method to post directly to this blog any good wishes, prayers or comments you'd like to make.

Simply send your comment to
lamey . pat . california [a] blogger . com
from your email program and it will post almost immediately. Be sure to eliminate all the spaces and replace [a] with @ when you type it into your email address. I mask the address to avoid web robots from grabbing the address for nefarious purposes.

Watching Mary Sleep

Mary woke up at 5:30AM and did get out of bed for a nature call. And, she ate her breakfast. I got here about 9AM. Upon my arrival, she lectured me about the lack of flavor and interest in the way hospitals prepare patient food. I keep reminding her that my Aunt Peggy was a hospital nutritionist (now retired). About a decade ago, Aunt Peggy came to sunny California for a visit during the winter. She was amazed by the variety of foods available at our farmer's market. Considering we think of the winter market as thin, sketchy and nearly desolate, we were taken aback that a professional nutritionist was surprised by the few offerings we did have. Then we remembered, she was a hospital nutritionist.

By this time, Mary was clearly tired so I suggested she nap. She's been asleep for a good 45 minutes now. Its a darn good thing I bring my computer along.

Before I arrived, the surgeon, Dr. Visser, stopped in early and did a bit of work on the railroad track as Mary describes the incision. Most people know what an incision looks like when healing. Well, in Mary's case the closure devices are metal staples. So the edges of the skin look like railroad rails and the staples look like railroad ties. Hence, the name. The incision starts at the sternum, heads south to almost touch the belly button (on me, that is a long way, on Mary, its a short distance) and then the incision turns to Mary's right and proceeds quite a way to her right side. It looks like a flap so they could "open 'er up" to get at the liver, bile ducts, veins, artieries, lymphatic bits, etc., during the surgery. Given the liver is working and the renal system is nominal, I would think discharge tomorrow is possible. That is also what Dr. Visser said but he also indicated it was now the renal team's decision.

Personally, I'd like to see her get out of bed a bit more and do some longer walks before she is discharged. The Roxicodone seems to make her very sleepy and that keeps her down a bit more than I like. Amazing, Mary's nurse today is the same one she had on Tuesday immediately after the surgery. She is a real hoot and a tremendous nurse. She infects us with her humor, energy and get it done attitude.

The nurse just came through and they are planning on training Reenie on making sure the railroad tracks are properly drained. Apparently Dr. Visser found a minor infection so they are initiating a draining procedure to make sure it doesn't stress the liver.

Bedtime for Mary

Mary had a good day today. She ate at every meal, is drinking fluids but not as much as is allowed (they have a 1.5L max and she is doing about 1L). The reason she has an upper limit on liquids is that they are afraid she might dilute the sodium ratio in her system and go visit SIADH land again. NOT! The Roxicodine appears to keep the pain under control.

Mary did shower this afternoon and then she had visitors from Habitat for Humanity, Silicon Valley. HfHSV is a charity where Mary has spent hundreds and hundreds of hours each year since volunteering in 2001. She has held roles as the chair of committees such as site acquisition and family selection over the years. She always seems to find a way to volunteer to do more, too. She really does believe in their mission. Thanks to Jennifer, Erin and Julie for stopping by today and giving a very nice bed jacket. Very nice!

Dinner was a pork cutlet with veggies and Mary did eat a reasonable amount. She was also nibbling on the various goodies Reenie brought along so she has had good food intake today.

My observation is that she is much more cognizant today than yesterday. As Reenie commented, today she is awake enough to know she is foggy headed from the painkillers. Mary also took a short walk outside of the room so she is working to get where she needs to be.

It appears the renal docs are in control of the discharge decision and they are not ready to let Mary go home yet. Given her overall condition, I think that is good. She needs a day or two more time.

What does it mean?

Here is my current interpretation of what is going on. The surgery was done "at the max." Literally, there was no more tissue it could have taken. As Dr. Visser said, he had to have a minimum amount of bile duct to work with and connect to or the surgery would have failed for lack of a connection from the remaining liver to the intestine. In this graphic, I have added an estimated "cut line" and how it slices through two tiny bile ducts in the retained liver. Those are, my interpretation, the 2mm ducts he had to connect the intestine to.

This link shows the real complexity with the bile ducts, arteries and veins. To me it clearly makes the point that they were able to do the surgery at all is absolutely amazing.

The pathologists spent the week confirming and re-confirming their findings and conclusions. And, the final answer is there was not sufficient margin (distance) along the bile ducts from the cancerous location(s) to Mary's remaining liver. Without sufficient margin (distance), the presumption is that cancer has a high possibility of being present in those very small ducts of her remaining liver.

So what is the difference? We've always know radiation and chemo was on the agenda although later in the summer. The difference is that the radiation and chemo treatments now are Mary's primary line of defense to stop this thing so they must be done as soon as possible. Previously, the radiation and chemo steps were to assure completeness. Its a different role and represents different risk.

Anyway, I am on my way to the hospital. Reenie has been there since this morning and the two sisters are having a bit of an all day picnic with "Quirk" food rather than hospital fare. And, Reenie reported that Mary is eating the goodies that Reenie prepared. Hooray! Reenie did get permission from the nutritionist yesterday to bring in food if it would help Mary eat. It is helping, Reenie reports.

The doctor's report

This evening, Dr. Visser and the entire surgical team came to visit Mary in her room. Reenie and I were both there so we both heard what the good doctor had to say. Basically, it comes in three parts.

The easy part first:

They removed her drain tube so she is now free of the last tube hanging off of her body. No IVs, no drains, all free and clear.

Pathology confirmed klatskin's tumor, cholangiocarcinoma was present in the removed tissue. The tumor was classified as at T3 tumor (on a scale from T0 to T4). And, there was no evidence of cancer in any nodes or evidence of any metastasis. So the only external finding of cancer was the node removed during the gall bladder surgery a month ago. Which says we were damn lucky it was in that node (the canary in the mine node) because it was the only confirmation we had that cancer was present.

Mary's liver is performing quite well. There was a short period of jaundice but it snapped back to normal quickly.

The surgical team is willing to send her home on Friday.

Overall, the surgical treatment is as good as it can be!

The harder part:

The renal doctors are not sure of her sodium stability and are not ready to send her home on Friday. They want more days knowing that her system is stable and working and she won't crash in an unrecoverable way at home.

The roxicodone dose (5mg every 3 hours) is comfortable for Mary although it leaves her just a little bit 'out of it' compared to yesterday when she was really out of it. We didn't discuss how long she will stay on the painkiller.

The hardest part:

The pathologists went back and forth as to whether there was good margin in the bile ducts in the direction of the remaining liver. The conclusion is a questionable margin leading to radiation and possibly chemo sooner rather than later.

As a result, Mary will be in for radiation treatment in about 3 to 4 weeks (rather than late summer as I reported some weeks ago). Dr. Visser placed gold drops (fiducials) in the liver so the radiation team can accurately target the bile ducts.

The bottom line is bittersweet.

Yes, they were as successful as this very high risk surgery can be. But, they may not have been able to remove all the cancerous material. Yes, the cancer is contained. But, they need to do more to do to be certain they have stopped this damn cancer. Radiation (cyberknife?) may provide the answer needed.

So where are we? Step 2 is not yet complete because Mary has not yet regenerated her liver and that should take 6 to 8 weeks from the date of surgery. However, because of the uncertainty of cancer in the remaining liver's bile ducts, they are starting the Step 3 treatments as soon as possible. The limitation is Mary's overall strength and recovery. Hence the expected radiation in 3 to 4 weeks which means Step 3 treatment (radiation) is overlapping in in the 5th to 6th week of the Step 2 recovery program.

Disappointed? Yes. Surprised? No--we had been fully briefed that this could be an outcome. Next steps? Not clear but we see Dr. Visser in the office on Friday next week.

Wednesday PM

A quiet day with reasonable progress. They seem to have the pain meds defined so that Mary's pain level is good and she is very much awake. Far better than yesterday.

Reenie and Mary had a good discussion with the nutritionist today and the bottom line is that she can eat anything that sounds good to her--even while she is still in the hospital. So Reenie was working on a shopping list for food to bring with her tomorrow to help Mary's appetite.

Ingrid stopped by and left a bowl of fresh-made spaghetti which Mary is currently eating with gusto.

Mary's abdominal drain is still producing fluids and they are taking samples and sending them out for lab tests. We don't know what those lab tests results are. They are also taking blood samples twice daily to make sure all of her metrics are in the normal range. She has had continuing good and stable blood test results.

We are hoping to hear about the pathology reports soon from the materials removed during surgery last week. Also, we want to hear what we should plan for Mary post-release so we know what to do when she gets home whether it is Friday or later.

New News!

Dr. Visser stopped by this morning to talk to Mary. He is very pleased with her progress and even mentioned she might be ready for discharge on Friday!

Wednesday Morning

Reenie arrived as planned and we had a nice visit with Mary.

Mary is clearly being affected by the pain medications. She is not as "with it" as she was Monday night--in fact, she acts like she is stoned (not drunk)--not really engaged. As a contrast, on Monday evening Mary and I had a very long and engaging conversation about what had transpired since the surgery to Monday night. She even helped me figure out what she was feeling and aware of at various times. Last night, she was simply not engaged. Floaty is probably a good term.

They are watching very carefully and they are picking painkillers as if some narcotics and opiates are the plague which makes it really difficult to treat her pain. I gather from this behavior that there is some suspicion that the SIADH was triggered by the dilaudid last Wednesday. Ya think?

Mary's appetite has been suppressed by the pain meds. She ate breakfast and a big chunk of the taco lunch provided but didn't touch the dinner tray at all.

They have an IV feed into her right arm but it is not used all the time. Yesterday they did plug an IV into it for a while to get potassium into her system. Her pill regimen includes sodium tablets to make sure her salt levels stays where it belongs. Her BP is very nice in the 110-120s over 50 to 60s. She does have one abdominal drain still in place and they are watching that closely as well. It started to leak (the tube is smaller than the opening, basically) so they have glued a capture bag to it and that is keeping her dry.

Waiting for Reenie

Mary is feeling pain as the docs try to optimize oral painkillers. She also seems to have lost her appetite as they do this optimization.

Terry spent the afternoon after Ingrid was here for the morning. I cannot thank them enough.

They are tracking Mary's electrolytes very carefully and put her back on an IV for a while to boost her potassium.

MaryR stopped in after her consultation today. She then went to fetch Reenie at the airport and they should be here any minute.

Bottom line: our girl's progress continues but at a slower rate as they optimize the oral painkillers.

Noon Report, Tues

Mary is feeling a lot better. She took her first shower since a week ago Sunday.  They are concentrating on her sodium balance and fluids output.  The docs are concerned because they don't know what triggered the first round of SIADH, they want to make sure it is not likely to happen again.  So Mary is on a limited liquids diet, high sodium content (which, she reports, tastes just awful) and monitoring her gozinta/gozouta ratio. 

 

She talke to me by phone and her son, Tim.  Ingrid did visiting duties this morning and Terry has tag teamed for the early afternoon.  I'll be there by 3PM.  MaryR is picking up Reenie at San Jose airport (7PM) and bringing her to the hospital for a tuck in for the night visit. 

 

Ciao

Monday Evening

What a difference a day makes! Mary is alert, carrying on full conversations and not drifting off in the middle of them. She has been out of bed several times and the last included a trip to the sink to brush her teeth.

Ingrid, MaryR and Terry did the tag team today and for that I must thank them profusely. It allowed me to concentrate on work and not be distracted. Thank you!

Mary and I had a nice long chat about what she remembered and when she thought it happened.

She does remember the conversation with the surgical resident and the "I hate it when someone won't answer a simple question. Or perhaps, you don't know the answer?" and later that night being distracted by NCIS and not saying goodnight to me. From there on, she remembers nothing until she woke up in the wee hours of Saturday morning in ICU and feeling disoriented because she didn't know where she was or how she got there. In other words, she lost Wed, Thurs and Friday or a total of about 72 hours.

Our girl is back now and getting stronger by the minute.

Mary is having dinner

Only one tube left for her abdominal drain.

Dinner is mac and cheese, green beans, salad and a cookie. She is
eating well but not all.

This private room is really nice.

Mary's private room on the garden

Mary without all the tubes and Terry.

Mary is doing very well

Hi All,

I just left Mary and she had lunch of fresh fruit - melon, cantaloupe, pineapple and grapes along with cottage cheese. She ate about half of it and was talkative and very alert. (For book club members - she was discussing our book on Afghanistan - most likely the most disliked book our 8 year old club has read!!! Yes, it was my selection!!)

They are in the process of removing the IV from her neck and putting one in her arm. She is scheduled for a shower this afternoon and is VERY much looking forward to washing her hair.

Terry arrived and I am headed off to work for the afternoon. I will be picking up Renee at the airport tomorrow evening.

Mary R.

Monday Report

Given Mary was feeling pretty good last night, I have asked Ingrid, Terry and MaryR to tag team Mary so she has company until I arrive about 2PM today (I do have a job and I want to keep it!)

Ingrid arrived with some good tea instead of the Lipton tea served by the hospital. Ingrid will be replaced by MaryR and then Terry arrives to relieve Mary.

Ingrid reported that Dr. Visser stopped to see Mary this morning and is very pleased with her status. He is discontinuing all the tubes and connections except one IV and is ok'ing a shower which will make our girl very happy! I guess that means she is off the catheter and the feeding tube!

He said her liver functions are really good. Pain meds will now be oral in form, not injections.

Ingrid found Mary up and waking when she arrived so Mary is clearly on the mend.

We need to be cautious, however. This success does not mean she has completed Step 2 of this journey. It simply means she is on the path to successfully complete it.

Sunday Wrap Up

Mary arrived here in E3 about 4pm. She tends to fall asleep easily and in the middle of talking, drinking, eating or listening.

She is now allowed solid foods so she ate more than a few bites from her tray of the roast beef, rice, broccoli, tomato and a cherry cobbler type of dessert. She drank all of her orange juice, several small cups of water and a larger cup of hot tea.

Tomorrow starts the sitting, walking and a visit from the physical therapist.

All in all, a good day.

Ciao

Mary is in a surgical floor room

We just arrived and are awaiting her nurse.

To a regular room

Mary is moving to a regular surgical floor room in an hour or so.

Ingrid's Report

Visiting Mary on 5-16

I was happily surprised to see Mary look as good as she did. Her complexion was even, her eyes looked alert and she had a ready smile. She tried to reach out immediately. I felt such a comforting warmth coming from her that my deepest worries dissipated. I wish they had had real broth for Mary, I hope I can bring her some real German chicken broth soon, and her recovery will speed up even more! Mary has the prettiest feet! I detected hardly any swelling and she enjoyed the foot massage with light pressure, which is also a good sign.

I have to remember to tell Mary about Pat's competency in her kitchen. What a surprise! Between visiting hours Pat had enough time to go home, and he shared his dinner with me…maybe because I still had ice cream in my cooler and it needed to go to a freezer…his freezer :-))

I am so very much relieved to have seen Mary in good spirits. We joked about food preference or tolerance based on our ancestors, and she went back to recall names of the various grandparents and great grand parents, and where they came from.

With all the love and care Pat pours over Mary, his attention to all the details, keeping everybody on their toes, and the love and prayers from her children, Family and friends, and the strong will Mary has, it will all be good!

xoxo Ingrid

And thank you to my co-workers

Obviously, I have been ignoring work a whole bunch. And, I and a team of coworkers are running seven conferences for about 1,300 employees in seven cities around the world. Monday is Tokyo followed by Singapore and Taipei this week. We then continue with Shanghai, Bangalore and Frankfurt before returning to Silicon Valley.

I just want to publically thank David, Shannon, Sandy and Rudi for pulling together, making the trips and carrying forward in my absence.

And a big Thank You to Agnes who stayed an extra few days in Asia to help Sandy with the first meeting in Tokyo.

Too the entire team, Thank You very much.

The progress continues

I made some changes at http://www.lamey-hughes.com/ If you didn't arrive by our home page, be sure to check it out once in a while.

I saw Mary at 10 and they let me stay until 11 when the patient in the next bed needed a procedure the nurse and doctor suggested I didn't want to be around while it happened. I headed for the hospital cafeteria and I'll hang here until the noon visit.

In spite of my complaints and large public following of this blog, Stanford has chosen to incur my wrath and not opened the coffee bar today either. I want my 'why bother.'

As for Mary, her sodium is normal. The renal docs stopped by while I was there and they are disengaging because she is nominal and stable. As to why it happened, it does with surgery sometimes. No firm cause. They will monitor but believe she is fine and on track.

And, Mary will be downgraded one level to the monitoring unit. You may recall she stopped there for a few hours before she was upgraded to full ICU. I don't think I've been so happy about a downgrade anytime in my life. It means her healing is continuing and she is getting better. The monitoring unit will be making her sit up and possibly walk so its deja vu all over again from Tuesday last week.

They changed the nutrient supplied by the feeding tube to better match her electrolyte needs. And, they have increase the volume over the last 24 hours from 10 units per hour to 30 and now it is at 40 units per hour.

Mary did eat a bit of the wonderful breakfast she recieved. Need I say that they delivered apple juice again? Of course, the nutritionist wrote it down to send cranberry or orange juice so the kitchen sends appled juice. Sometimes I wonder. Our wonderful ICU nurses have said they really don't know how to manage the kitchen, the vast majority of their patients don't eat and frequently cannot talk. The rest of breakfast was the same as dinner. Yummy!

Mary still has her fentanyl button so when she feels the pain, she hits that puppy. Its limited by a little computer controlled device so she cannot overdose.

I wish I could have taken a picture of her IV tree last night. The lights were turned down low in the room. There were some large number of bags and bottles hanging at the top of the tree. Then, there were, count them, six computer like thingys hanging on the tree, displays glowing with unintelligble information and managing the flow of all the fluids going into her IV or feeding tube. In the immediate background was the glowing LCD monitor with the bright multicolored tracks running across a black screen the screen displaying pulse in green, blood pressure in red, respiration rate in white, oxygenation in blue and one more thing I never understood. To the left of the tree was the nurse's computer with its various instruments hanging from it. All of these glowing, pulsing lighted devices were accompanied by the whirring and clicking sound of the pump driving the massage leggings Mary has been wearing this whole time. Starship Enterprise has nothing on a modern ICU unit.

I ate my breakfast while writing this. The breakfast food was unappealing (perhaps gross is an understatement) so I had a carne asada salad. Hey, it has a couple slices of beef, a dash of salsa, a few chips and a whole pile of chopped iceberg lettuce. Who says hospitals don't serve good food?

On my way for the noon visit. Hopefully they haven't moved here yet and I don't have to spend a lot of time finding her.

Ciao

Saturday Evening

Step 2 continues and Mary is definitely improving. They have a feeding tube that delivers a nutrient with fiber to her duodenum. The amount is small, about 10 units per hour when a typical patient gets 40 to 80. Going slow is the secret to success they tell me.

Ingrid stopped by the waiting room about 5:30PM yesterday and we both went into see Mary at 6PM. Mary happened to have a dinner delivered at that time. Well, if you can call apple juice, chicken broth, jello, orange ice and Lipton tea a dinner. Ingrid spoon fed some broth and some tea to Mary. Because we were helping, the nurse allowed us to stay in ICU until 6:55PM and then they asked us to leave because of shift change.

While we were there, Mary was very communicative and interactive. However, she is still limited to staying in bed. We have a long way to go but the signs are positive.

As I was sleeping...

...sitting up in a waiting room chair, one of the surgical team recognized me and stopped to talk to me. (All those years of flying coach really do pay off at a time like this.)

Mary is doing great on the sodium and liver progress. They are taking a day by day attitude and they like having her in ICU because of the attention the nurses can deliver. The opinion now is that she is truly nominal and, given no more surprises, she will continue to get stronger.

She was one of the pack when Mary challenged the lead surgical resident on Tuesday. Apparently, a new catch phrase amongst the residents is "The liver numbers are not perfect" for flagging evasive situations. If you recall, Mary dressed the doctor down for not knowing the numbers. Reread the last paragraph of this posting if you don't recall.

All in all, things are much better. We need Mary to get to normal sodium levels and to be strong enough to start doing more nomal things. Sitting, walking, eating, voiding, etc. She did take her first drink of water today as part of a test ordered by one of the doctors. She swallowed successfully and held it down.

Ingrid and Maurice will be here at 5:30 for a visit and then we'll tag team so they can see Mary during the 30 minute window.

Saturday at noon

Can you imagine? The Stanford Hospital Cafeteria's coffee bar is closed on Saturday and Sunday. The Cafe is open, they just close the coffee bar. This really hurts! No double decaf non-fat largest cup latte for me today! I ordered this in a local coffee bar in Napa one time and this sweet young thing with an edge to her looked me square in the eyes and said, "Sir, up here we call that a 'why bother'."

On a more serious note, I may not have communicated correctly Mary's situation because I was so relieved and excited that she was awake and alert again.

I said a couple of days ago that Mary had slipped out of the woods and into the deep jungle. Thankfully, the renal docs knew where she was (SIADH) and they are now bringing her back to the woods in a slow and steady manner to avoid damage that can be caused by too fast a return. As for the woods she is in, it is a known and mapped area now. The liver metrics are all good and the surgeon is very pleased with her progress. However, we are still in major risk territory. That little slice of liver must keep regenerating and growing while it is working to keep our girl alive. It is nominal for 5 days after surgery but it takes another 5 to 7 weeks to declare success in Step 2 of this journey.

She will be in ICU today per Dr Visser's orders. They will make a decision tomorrow about returning her to a regular room.

They have removed the epidural probe as of last night. Mary's veins in her arms are so small and hard to find that they have put the IV in the neck--main line, I think they called it.

As of 11AM, she is back on self administred fentanyl but much lower dose than before. Mary has said her pain is between 6 and 8 on a scale of 10.

I have talked to the ICU and the neurological teams of doctors this morning. They are all pleased with the current recovery and very cautious about what may happen next.

Way to go, Mary!

I am so happy you  are doing better, Mary.  You are so strong and courageous.

 

Love to you and Pat.
 

------------------
Marge Peterson

I am in ICU

Mary is very alert and communicative. She is sleepy but expressive.
Looking better too.

A posting from Reenie

Mary's sister Reenie posted this as a comment to my sister's posting, Sister Maureen. Quick background: we both have a sister named Maureen. Mary's goes by Reenie and lives in northern Minnesota (where white rain fell yesterday in Arrowhead county) and mine is a Sister of St.Joseph of Corondolet living in St. Paul.

I am moving Reenie's posting here so everyone can read it

Reenie's post:

What CANCER cannot do.....
Cancer is so limited....
It cannot cripple LOVE....
It cannot shatter HOPE....
It cannot corrode FAITH....
It cannot destroy PEACE....
It cannot kill FRIENDSHIP....
It cannot supppress MEMORIES....
It cannot silence COURAGE...
It cannot invade the SOUL....
It cannot steal ETERNAL LIFE....
It cannot conquer the SPIRIT.... (author unknown)

Hooray!

What a relief!  It's so good to know what's happening and see something turning in the right direction! Keep up the posts when you can. Good to hear from Mary R as well. Love, Maureen

Good news

As Ken would say, terrific! Love to you and Mary.
Marite, Anne and Katherine

It has a name

I was talking with the ICU doctor as I just left Mary's room. He repeated what Dr. Visser said, that this behavior of Mary's system is something the surgeons and even the ICU staff were unaware of but the renal doctors had seen it as a result of surgery and even a name for it: SIADH. And, it can be induced by abdominal surgery. He said they saw the low sodium numbers in the test reports but it wasn't tied together until the renal docs were engaged.

ICU doc also said that the treatment is to slowly bring her back to normal levels. If it is done too fast, other damage can occur.

Mary was alert and in pain. The have authorized fentanyl again and it works very nice to knock down the pain. I have been very vocal that this is the only painkiller she should get. No dilaudid or other opiates. She seems to be fine with the fentanyl.

Notwithstanding all of that, she is clearly on the mend, she has good liver function numbers and sodium numbers coming back from her tests. Dr Visser even said that she had them all on pins and needles because they didn't really have a clue. With the immediate benefit for treating SIADH, they see no need for the procedures tied to alternate diagnostic theories.

And, feel free to add comments to this blog by clicking on any of the comment boxes. Or, as MaryR did tonight, send an email to lamey.pat.california[at]blogger.com (replace [a] with @). It will post immediately. I always go in afterwards and remove any info that shouldn't be on the web. Mary will enjoy reading your comments in the next few days, I am sure.

Really Good News!

I've asked MaryR to post what we heard tonight and she has. Thanks to you, MaryR

And here is a link to MaryR's story.

Good News!!

Hi,

This is Mary (aka Mary R) I was at Stanford today for my checkup MRI and I stopped in to see Mary & Pat.

Mary's eyes are open and she is responsive to questions and her name. You may not get an answer that you fully understand but your question is acknowledged.

While I was there the surgeon, Dr. Visser, came in and told Pat what they think the issue has been - a sodium imbalance (too low) due to stress brought on by the surgery. The liver tests are starting to get back to normal as he had thought they would by this time - so they do not feel this has been a liver problem.

Dr. Visser has not seen this kind of reaction to surgery in his practice but the kidney doctors they brought in earlier today felt very strongly that this was the issue. They are bringing the sodium level back to normal and as they do Mary is becoming more and more aware & responsive.

We were kicked out at 6:30 and needless to say we (all of us) are feeling a great deal of relief!!!! Pat is on his way home for dinner and dog feeding. He will return for the next visiting time of 9:00 PM this evening. He asked that I send out this information ASAP so I have found a computer here at Stanford and am sending this message.

Let's all keep our fingers crossed that this is the answer and things are getting much better!!!

My best and love to all - even if I haven't met you, if you are friends of Mary & Pat you are good people!!!


Mary R

Late Friday Afternoon

Mary has become responsive! She has said several things in a clear and audible way. "I don't know" and "I need" are the two that I can recall. And, she has responded to my questions with "No" or "Yes" or a positive nodding of her head. Its so comforting to see her interact, even in the limited way I've just seen. Its far better than the somnulent period we had from noon on Thursday until 4PM today.

Mary's ICU nurse, Jackie, has had to start enforcing the rules so she only gave me one hour instead of 90 minutes. I can go back in at 6PM.

Friday Lunch and a blog entry

Not much change from last night. The ICU nurses allow me to visit for up to 90 minutes because Mary appears to be responsive to my voice. I stand at the bedside and talk to Mary (no chairs for visitors in ICU). That means I am off line and unable to communicate because no phones or computers are to be used in ICU.

Frequently but not at all in the majority, her eyes will turn and lock on to mine. Her eyes are closed most of the time and when they are open, she is staring vacantly into the distance. It is a real thrill when they move and lock onto my eyes.

We have teams and teams of doctors visiting, ordering tests and simply asking if there has been any change. Frankly, they are flummoxed although the moves they do make appear to improve her vital signs or her test results in a positive fashion.

Mary has not said a word or made an intended noise since noon yesterday. She is not comatose, she is somnolent.

Later

Thursday noon

I was prompt for the 10am visit.

No change in her condition. Vitals are good, she is bloated and she
was less responsive until she heard my voice according to the nurse.

Waiting.

Until 11PM

The ICU nurse let me stay until 11PM.  Unfortunately, there is no change in her awareness.  

I talked with her non-stop while I was in there. Some eye movement and if I pulled her eyelid open, her eye would wander and eventually find my face.

Next visit is 10AM. 

Pat-Mary

Los Gatos, CA

ICU at 10

They were in a procedure and asked me to postpone for 15 min. I wonder
if I still get a total of 30?

Arrived in ICU

Mary is now in the ICU unit. There are two nurses for two patients in each room. I have also met the ICU doctor and we had a chat too. He was interrupted by a phone call from the surgical team and they were intently discussing Mary and her condition. I didn't feel insulted.

The visiting hours in ICU are very different. Mary is allowed two visitors for 30 minutes. The 30 minutes begin at 10AM, Noon, 2PM, 4PM, 6PM and a doublet at 9PM and 10PM. Otherwise, there is a number I can call and with my password get transfered to the on duty ICU nurse who can give a status. Phone calls are not allowed at the beginning of each shift (7AM to 9AM and 7PM to 9PM).

The diagnosis is the same. They don't know what is doing this and the longer it goes, the less they believe its narcotic impact (although I know how long it takes her to clear anesthesia with a full sized liver!). What else could it be? Not sure, the metrics are not indicative of any particular direction yet.

Mary is totally uncommunicative. No response to questions or sound. Her vitals are good. She is very bloated and looks like she has gained 30 lbs or more and she is producing liquids via the catheter. She does respond to being touched and unfortunately, the docs use a painful technique to get her to respond. I have one more visit (10-10:30) and then I head home. MaryR fed the doggies tonight so they will be settled by the time I get there. And Gourmet Dreams delivered dinner earlier so I have some good food to eat.

We are definitely not out of the woods

Dr. Visser told us after the surgery on Monday night that we are not "out of the woods" until Mary is able to complete step 2: Her liver is functioning and supporting her body.

Definitely, we are not out of the woods. In fact, we are far deeper in the woods than any of the medical team has ever been before. Mary has gone from Tuesday where she was alert, awake and even challenging her team of surgical residents to being totally uncommunicative. All of her vitals are good (heartbeat, BP, temperature, breathing rate, oxygen content) but some of her liver metrics have started to move in the wrong direction after being stable for several days. The docs are puzzled and that goes for the lead surgeon and the members of the surgical team, the lead pain meds doctor and his team and the ultrasound/radiologists that read her CT scan and ultrasounds today.

The CT scan was negative for stroke, the ultrasound confirmed the surgery was successful for blood and bile flow. The liver metrics, even though they are moving in the wrong direction are not in a panic range.

The most plausible theory is that she is overloaded with narcotic pain killers and her liver, which normally does a slow job of processing them, is really, really slow because only 1/5th of it remains. They have given her narcan to help cancel the narcotics but it has had no effect.

The decision was made to move her from the post-surgery nursing unit to "monitoring unit". The benefit is that the nurse to patient ratio is much better and she is constantly hooked to the remote monitoring equipment. By 7PM, the doctors decided this was not enough and they are now putting her in ICU for the night. More intensive nursing and staffed with doctors all night. The fear is that she finally processes the last of the pain meds, wakes up and is in screaming pain because there is nothing in her system. The preparation to counter that is a feeding tube that allows them to put different, non IV medicines in her such as neurontin.

We are rolling to ICU in a few minutes. I don't know if they let me stay with her or not. I'll find out soon.

Moved to a monitoring unit

They are concerned enough about Mary's overall condition that they have moved her to a monitoring unit. This is between a post surgical unit (5 patients per nurse and aide) and ICU. In a monitoring unit, its no more than 3 patients per nurse. And, she is plugged into so much high tech gear you'd think she was an astronaut under test or something.

Her welcoming party consisted of two RNs who were double checking everything. New dressinges, fresh gown, confirming all the connections, etc. They also installed sensors for the various monitoring units--it is a monitoring section of the hospital, is it not?

As for Mary, she is still not very cognizant. She does respond to her name but does not talk in sentences and often doesn't respond to questions asked of her. Yeah, its not a good sign that they moved her here. It is good that they have this capability.

Thursday Morning

Mary was pretty much ok until 9:30ish this morning. Then she clearly went into a difficult period affecting her cognitive abilities and expressing a desire to get out of bed and go.

They are running some super duper blood tests looking for build up of stuff that could cause this. And to be sure, they ran a CT scan of her head. It was negative for problems.

Mary's appearance is bloated. Clearly she has a build up of fluids in her body. The hypothesis is that the remaining 20% of the liver is not keeping up with the intake of chemistry and meds so they have turned everything off and are running the one remaining IV drip at 1/2 or 1/3rd of yesterday'ss rate. The kidneys appear to be fine so it isn't a kidney problem.

As a precaution, they are moving her to a monitor room so the nursing staff can continuously monitor vitals and more. The bottom line is that they must figure out how to balance her intake with the liver's ability to filter and cleanse the blood stream. The nurse just reported that the metrics for her liver are good so that is a positive sign.

I will keep you posted.

Wednesday wrap up

Mary's condition is pretty much the same. She is sleeping and not alert or awake. When she is awake, she is very much foggy and confused. This is not the lady that rocked the chief surgical resident yesterday afternoon. Her system has to get rid of the dilaudid which it never was good at doing. And, if the dilaudid is removed via the kidney, no sweat. If its by the liver, well, we are at 1/5th of nominal capacity IF everything is good.

I'll be back in the morning.

Impersonating a stone

Mary is still out of it. She wakes up every so often and calls my name. When I respond, she quickly drifts to sleep.

She got a new roommate. The last one was a sweet young thing having problems with her pregnancy. I don't know what problem the new one has but she is about our age, is alone, and talks in her sleep-drugged state. She had an outpatient procedure today and they ended up admitting her.

A change of nurse

I will never quiet grasp the hospital shift system. Our first nurse of the day is an 8 hour nurse so now we have a 4 hour nurse who will be replaced by a 12 hour nurse. I dunno as long as there is a nurse who responds when we call.

Frankly, today is very disappointing compared to where we were yesterday. The dilaudid still has not worked out of her system and Mary continues to sleep. The 4 hour nurse looked at the record and this morning Mary did sit in the chair for an hour and did walk after the chair. Then they gave her the dilaudid via epidural and she has been wiped out ever since. She does respond when you speak loudly in her face and she has said the pain is now a 3 on a scale of 10 (max).

And, she cannot go on neurontin because she is not allowed anything by mouth--food or drink and neurontin is pill form only in the USA (Europe has approved IV use). That's when they reconfirmed that she should use the fentanyl magic button more often. Its programmed to allow up to 6 hits per hour--if she pushes the button.

Waiting...

Oh, the pain

Mary has been very quiet and has slept almost non-stop since my arrival 11-ish. She is feeling pain that was not present yesterday and is not as alert, active and bright eyed. In fact, she is a bit of a stone today--other than when Dr. Visser visited at noontime. No sitting in the chair, no walking, and no bantering with me or the doctors.

The pain doc was here. Mary was feeling pain this morning and they wanted to eliminate it. They gave Mary dilaudid with her consent because it was via the epidural and they did not expect the nausea that happens with IV delivery. Reasonable thesis, results clearly were wrong. The pain doc is working on other things such as neurontin which will block the nerve rather than the action of the opiates (Mary really gets sick on those) or the NSAIDs which need to be avoided because she had liver surgery.

It turns out she was not self-medicating aggressively enough with the fentanyl so we need her to push the button more often.

Our surgeon stopped by

And explained what was going on with the blood and plasma. Basically, he is watching the trend and slope in some of the things they measure in the blood. Sorry, I missed which ones. He believes Mary has reached a plateau and will be at this level for a few more hours and then the end of day numbers will tell him if he should continue or not.

The key issue is having enough good stuff in the blood to promote healing of the incision and all the cutting and pasting he did without hiding a possible rupture that would require immedate surgery. And, the more hours away from the actual surgery, the less risk of a rupture scenario.

As for the liver, he thought the metrics were nominal given her surgery. No cause for alarm but not out of the woods yet either.

Tuesday Wrapup

I wrote most of this last night and fell asleep before I posted it. Here is the end of the day report from Tuesday:
* * * * * * * * *

The dogs are fed, so am I. The Waldorf salad and chicken ragout from the To Go Menu of Gourmet Dreams was super. Far better than the drive thru line at Jack in the Box.

I did leave before the plasma transfusion was complete. Mary was wide awake and watching NCIS. I don't know what she was planning to do after that but she was fully engaged in NCIS.

Comments about an amazing day. When the day shift nurse arrived at 7AM, they could not wake Mary up. They were concerned, and rightfully so, of a problem from the transfusion. At 8AM, Irene the nurse asked a foggy and nearly non-responsive Mary if there was someone she would like to talk to. Mary whispered "Husband" and Irene found my number and dialed the phone for Mary. We talked briefly and I arrived at the hospital about 2 hours later. I walked into Mary's room and she was sleeping soundly. A few minutes later, Irene arrived and woke Mary and asked her to identify me. It took a moment for Mary to even open her eyes and look towards me but when she did, she clearly picked up some energy. Mary then became awake but was clearly dreamy. Irene asked me to keep her awake and not let her nod off. I did my best.

At noon, Irene and the aide put Mary in a chair next to the bed. The purpose is to change the pressure on the lungs to avoid problems. This is something they only do when there is family or friends around to monitor the patient. The fear is a patient blacking out or doing something without supervision and then falling and causing severe damage. Frankly, this was pushing Mary a bit for during the last few minutes, I had to hold her head up because she would drift asleep in mid-sentence and literally 'nod off'. After sitting for 45 min, they put Mary back into bed and she slept soundly. In fact, so did I (the benefit of all those years of flying in coach class is that I can sleep sitting up in a chair).

For the early afternoon, Mary was on a cycle of sleep, wake, chatting and asleep again and the nurse said this was ok. Various doctors arrived and Mary would wake up and engage in conversation. She was not 100% but she was, at times, strong.

At 6PM, Mary went back in the chair. The move from the bed to the chair was much easier this time because Mary did a bunch of it herself rather than the nurse and her aid lifting, holding, rotating and placing her in the chair like they had to do at noon. Mary was alert, chatty, even displayed a strong O&P gene component during the conversation. I didn't have to do my duty holding her head up. After 35 min or so, Mary buzzed the nurse and asked to take a walk. Irene came in and was tickled pink that Mary wanted to walk. So they help lift her and she walked across the room to the sink and brushed her teeth and combed her hair. She walked back and got into bed much easier than at noontime. When I say walk, the nurse had her in a full support hold in case Mary started to fall but the hold was pretty much unnecessary.

The walking caused pain so Mary hit the self medicate button and that caused her to drift off for a while. By 8PM she was alert again and I reminded her that the show NCIS was on because she had talked about it while sitting in the chair. She turned it on and was fully engaged, watching intently.

Somewhere in there the shift change occurred and last night's evening nurse reappeared--name of Rhoda. Rhoda was amazed by the change during the 12 hours. Rhoda told us that Mary's BP had dropped to 90/55 at one point and that's when the orders came through for the transfusion. And, when Rhoda left on Tuesday morning, she was unable to wake Mary at all and she was very concerned. Clearly she was relieved to see Mary awake, alert, chatty and generally in very good spirits.

Now, as Mary reminded me several times, we have not won the war, only the first battle (step 1, the surgery)--and we know there are several more battles to fight. The unknown right now is the state of the liver. The blood tests are indicating progress but its ain't over til its over and we are in the first hours of step 2. Mary has not had anything to eat or drink so there is no telling what will happen when they let her have a bit of something and that amazing re-plumbing job is tested to see if she can digest. (Mary is getting plenty of liquids and nutrients by way of the IVs so there is no risk on that front.)

And if you have read this far, the O&P gene? Its a family joke that grandma Alberta's major contribution to her two daughter's is the genetic pass down of O&P gene. Now, as many of you know Mary or her sister Reenie (Maureen E) you may not be aware the gene exists for in polite company they can both control it very well. And right now, O&P is benefiting us greatly for Mary is really driven, motivated, you name it to get through this step 2 successfully.

Mary herself asked me if she was showing O&P when talking to the chief surgical resident late yesterday afternoon. You decide. The recap:
The doctor said, "Your blood tests show the liver function isn't perfect" to which Mary asked, "OK, what are the numbers?"
The doctor made the mistake of saying, "Let's just say they are not perfect" to which Mary said, "I cannot stand it when someone will not answer a simple question. Or, perhaps, you don't know what the numbers are!" She had the doc back on his heels! At that point he turned to one of the members of the pack (doctors travel in packs in a teaching hospital) and asked for the numbers. As he was reading them off, Irene the nurse who had joined this conversation in progress said sweetly, "I'll get her a print out a bit later, is that ok?"
At that point, the pack "stepped out the back Jack" as the song says. I think Mary had really surprised him.
So, what does O&P stand for? Hmmm, maybe I will let you guess for a while.
Later