Tuesday, December 11

Spent 4 hours at clinic yesterday with Joe.  Lots of bloodwork, ekg, xrays to make sure his di tract is moving along ok.  Sunday night we got dumped with a foot of heavy snow.  Between Joe, Jim and myself we have 3 cars parked on the street which needed to be unearthed from the good dump we had.  Joe put a lot of effort into helping get cars moved to the other side of the street for snow removal, along with everyone else in the neighborhood.  Long and short, Joe put a lot of stress on his recovering body.  He seemed ok last night and we watched the Pink Panther Strikes Again which made us all giggle.  Laughter is so healing for the body.
Today his home health nurse will be visiting and checking up.  Monica!  We all have grown attached to this lovely woman.
Saturday night Joe went to a holiday open house with us, Lyndel King put on an amazing event and it was wonderful to have Joe with us enjoying the food and guests that evening.
Joe has been having iron infusions at the masonic cancer center over the course of the past couple weeks.  We are hoping it helps his fatigue and recovery.
thank you for all your support.

November 17, Saturday

Pretty exciting couple of days.  Joe has shown signs of internal bleeding.  Yesterday we trouped back over to the hospital, this time in the endoscopy day surgery area.  Joe had another procedure done. The good news, is that there is no internal bleeding going on in his upper gi tract.  Now they are working to figure out whey his iron levels are so low and he is anemic.  So, back to the cancer center for a follow up Wednesday.  His primary talked about an iron infusion and i hope that perhaps this is what he needs.  Today is beautiful and thanksgiving may be in the 60's. Have a wonderful holiday.

Friday, November 2

Joe is eating food again and enjoying so much he has not eaten in years.  such as halloween reeses peanut butter cups.  Sister Tesia came home for the weekend from Brooklyn and has been here for the week.  Missed Hurricane Sandy.  Her employment is in southern manhattan and is still out of power.  Airport open so she hopes to get on plane saturday.  Lots of obstacles for life back in nyc.  Joe has however, been happy to have her here. Diabetes present daily challenges but Joe is diligent about watching bs numbers and adjustments.  He is on the mend.  Fatigue continues and will be around for months to come but every week is better and better.  Joe is quite lucky.  Many people who have this surgery have significant problems post surgery.  Joe is progressing so well.  His 3 month checkup is this coming tuesday.  All the test he will be taking will tell Docs how the body is recovering and working.  Will post soon after.  here is a picture of joe and tesia before watching The Avengers.

October 20, Saturday

Joe is doing well.  All tubes have been removed from his body!  He is eating well, enjoying the food he does eat and digesting ok. this is great news.  He will be going in for his 3 month checkup in another week.  Hard to believe it has been 3 months.  After the last tube was removed last week which had allowed all night feeding into his intestine, he no longer needs to get up in the night for bs checks, meds and feeding bag additions.  We had all made such a routine, it has taken some time to get accustomed to sleeping at night!  Fatigue continues to be a real big challenge but he walks, does squats and stretches to help.  Take care and stop by if you can. 

Wednesday, Sept 27

IT is late.  I am waiting for the food enzymes to dissolve which takes about 30 minutes.  Then the enzymes with 25 cc water are mixed with the peptide that has been sustaining Joe for almost 2 months now.  At midnight I do a double bag so we don't need to fill the bag at 4am which makes that "event" a little faster and less stressful.  Saw Dr Dunn yesterday.  She applied silver nitrate to Joe's infection site to stave off more complications.  Aside from that, Joe is progressing well.  Dick and Judy brought us an organic watermelon sunday and we are all enjoying it.  It was grown on a farm near alexandria minnesota. 

Infection

Joe has developed an infection in the tube site of his abdomen.  He has had some trouble getting an antibiotic to work for him because of his allergy to penicillin.  We are hoping the site looks better today.  Made a short visit to Joes Ski Sale last night.  Sking Helps Joe and Jim think about the future and sking. Whistler Mountain with Mike?  Sweitzer Mountain in Idaho. Maybe February?  Cross our fingers.

Sept 10, Monday

After 10 years, a DQ Blizzard, mini size.

Sept 8, Saturday

Joe is making jello.  Slowly slowly a few soft foods in very small quantities are being consumed. It is going OK, no nausea or vomiting which are pretty typical post surgery problems.  Joe had a feeding tube event last night at 2am.  lots of yellow stuff on the rug, floor and clothes. That has been the worst that has happened since he started on the new machine when he got out of the hospital.  He is very busy every 4 hours with medications, wound changes, food bag fills and blood glucose checks.  He has to keep glucose levels in the happy range so make the islets, or what he has of islets, happy in their new home, Joe's liver.  Thanks for al the wonderful cards and well wishes.  I know Joe really appreciates the support he has felt from special friends and family.  and.....here is Joe's home nurse, Monica.  Another advantage of post surgery.

Sept 5, wednesday

a picture is worth a thousand words....
Joe had another tube removed, this one went directly into his stomach.  It was pretty
painful, but now it is gone!!  Dr. Dunn talked about slowly starting to eat soft foods.
Jim asked if a dairy queen would be soft.  oh yes with the fact that joe will be checking
food for carbo counts to determine insulin requirements.  Before, there was not
a possibility.  Now, he is slowly working toward being able to eat.  You can see
him feeding bag back on the lap.   Still doing getting up every 3-4 hours to do meds,
change feed bags, check blood levels but seems to be falling into a routine.

Sept 2, Sunday

Joe has advanced to a few liquids by mouth including now diet 7up, ice tea, ice water, and today broth.  Liquids still exiting through the gastric tube but now a much as last week.  He hopes this one might come out tuesday.  Maybe...  Joe is still on the feeding tube 24 hours a day.  Kangaroo Joey as it is named follows joe where ever he goes.  It pulled out of his stomach last night during bandage change which caused great concern for all of us.  We called urgent care transplant saturday night at 9pm and heard it is ok until it is painful and food/meds are not flowing into small intestine.  so far so good.  Here is Joe putting on the "feed bag".

August 30, Thursday

Yesterday and today have seen some significant improvements in Joe's recovery. In additon to popsicles, he started drinking water yesterday, and today he is drinking strawberry flavored ice tea and cherry flavored diet 7 UP. His surgical distress seems to be easing and he seems to be getting improved rest so he is really alert when awake now and is getting more active with each passing day. He might be getting into the beginning of the end, or is it the end of the beginning of the end, because it appears that an endocronologist is becoming much more important to his recovery. Nevertheless, he sees his surgeon on Tuesday and will perhaps begin to eat soft food which will be a huge milestone. His blood sugar numbers are now fairly consistent,  just a bit high. All the doc's and a nutritionist indicate that his insulin needs are pretty small for someone who has had a pancreas removed. It is hopeful that his insulin producing islet cells might be kicking in, Joe says he is getting hunger pangs and this is really positive cause it means his stomach is waking up. So there it is, Tomorrow Friday Aug. 31 will be the one month mark for his surgery. He has come a long way, but still a long way to go yet.

August 26 Sunday

Joe continues to do better slowly.  He is walking a block or two several times a day which puts him back in bed.  They said we could expect this and yes, it is true. Joe is however, building up strength every day.  Have not had the scary low blood sugars for 2 nights now.  Now they seem to be going the other way.  However, he is building up his strength slowly and is having hunger pangs.  So first is trying the popsicle thing.  We went to a lot of stores today looking for sugar free root beer popsicles but sadly had no luck.  However, did find banana flavor.  Unkl Bob came today to visit and jim and suzanne left for an hour to have  breakfast at the Longfellow Grill.  We pretty much sat in shock, eat and went back to our place.  Joe and Bob walked up the block and back.  Jim and I have our shifts, me till 12:30 and now sleep till 7am.  Jim sleeps from 10, wakes at 4 for blood checks and a med, then back to bed for a couple hours.  Now sure how long this will go on but we are getting thru it and full of hope now for Joe's future.  Tesia is moving to a new apartment in Brooklyn and she is very excited. Ok. taking a cat nap.

August 25, Saturday

Good news, Joe was able to tolerate 1 tsp, no 1/4 tsp, no 1/16 tsp of ginger ale diluted in ice and water yesterday afternoon.  Now today Saturday pm it is 1/2 sugar free banana popsicle.  Here are a few before and afters.  Jim and Suzanne to continue to live on the kindness of friends bringing over food.  Our kitchen is basically a hospital work station.

August 24, Saturday

wow what a couple of days.  Joe's sugar/insulin has been out of whack so we have
been doing a lot of one hour checks throughout the night.  which means joe hasn't had 5 hours of straight sleep in the past 3 weeks and i am having trouble remembering this is friday and not saturday.  Today and last night have been better and joe is resting right now.  Home nurse, Monica, with Crystal home Care, who is beyond wonderful, checking all his holes and did a great clean up.  Joe however was disappointed that his incision is only 10 inches, he was hoping for a 14 inch scar.  Tough world eh?  Oor wonderful neighbor Pat brought food over for us today and so did my dear friend of 60 some years Marty. How Great friends are treasures.  Joe thanks everyone who is sending wonderful card and well wishes.
Also Joe tasted with his mouth sponge some watered down sugar free ginger ale today.  First time anything touching his thoat in 3 long weeks.  I should have taken a photo. his look of pleasure was ..........

August 20 Monday

A most stressful weekend.  Joe's feeding bag connection port into his small intestine was getting unplugged Saturday and Sunday continually.  It scarred us and required constant troubleshooting. WE tried to find someone in this myriad of people involved with transplants to correct the situation.  Lsst night a call in nurse with what is called home infusion service, recommended a nurse named Michelle who works not far from us on Kasota off 280.  So we all piled into the car this am and drove to the office/warehouse to find the right coupling/gizmo.  She brought out a cardboard box and we went through to find one that would work.  Michelle is now ranking right up there on our list of amazing help. 
A million dollar operation with a gizmo problem.  Jim said a plumber could of fixed it in one stop at Frattalones Hardware on Lake Street.   
Joe's home nurse Monica stopped by to see Joe (Joe really likes and trusts her).
She showed us how to change bandages on the four body ports Joe has had for all the tubes etc. and lots of tricks and ideas for managing all the requirements needed at this point in his recovery. 
Good new 2 body ports have scabbed up and will not require bandaging much longer.
Now 2 1/2 weeks since Joe has had food or water by mouth.  What a trooper he is.  This procedure is not for slow minded people!! We have set up a very sophisticated charting system to track meds, blood sugar, and various physical activities Joe is supposed to do.  It is all pretty overwhelming. Joe continues to feel all around shitty and fatigued.  We keep in mind several months down the pike when we can all go to Its Greek To Me for dinner on his birthday.
So hats off to Nurse Michelle, Joe, and Nurse Monica for their tireless work and efforts.  There truly are some wonderful people in the world.  BTW, Karen and Marty both dropped off some food for Jim and Suzanne which were greatly appreciated.
Tomorrow Dr. Dunn will see Joe at clinic for a checkup.  We shall see what we shall see.
More soon......
Our at home partial hospital  set up.

August 18, Saturday

It has been a really busy couple of days and there has not been a moment to update the blog. Joe is doing OK, but he was supposed to be discharged from the hospital last Thursday Aug. 16. Suzanne and Jim were in classes all trying to understand all of the home care involved as well as administering some pretty high powered pain killers, as well as feeding and all stuff entering the bpdy can only go through a feeding tube. Joe had a number of very patient nurses who tried to bring Jim and Suzanne up to speed on all of the overwhelming stuff. It was for sure that Jim and Suzanne made Curly and Moe look like a couple of real smooth characters. Poor Joe just watched with a certain degree of resigniation. After almost 2 weeks in the nuimber 1 hospital in the Twin Cities his attitude was "get me out of this circus." Unfortunately, the feeding kept coming undone, what a frightening scene, and the staff had a devil of a time fixing it. It seemed that a good auto mechanic could have fixed it with a good clamp, but all the high priced help couldn't figure it out. So Joe, with Jim and Sue's agreement, said he wanted to stay another day to make sure it didn't come unglued again. So Friday came around the tube stayed in place  and Jim and Sue took Joe home on Friday. The first thing he saw when he came into the house was flowers from Tesia.

 

The three have scratching heads on getting the correct dosages on all of the drugs and luckily a home care nurse stoped by for the afternoon to help with the correct dosages and how to change the dressings. Joe has been unbelievably strong in the face of uncertainty and intense pain. The scar on his stomach is about 14 inches long and he has a feeding tube leading into his intestine and a drainage tube leading out of his stomach. And a long road ahead, the feeding tube is expected to be in for another 6 weeks. And his blood sugar is kind of crazy. So the correct testing for blood sugar and insulin is really important to keep the islet cells healthy. Joe has been in prettty good humor, he sat on the deck yesterday afternoon, and went for a 10 minute walk with Suzanne today. It is really hard for him to get enough rest with all of the stuff going into his feeding tube and blood sugar tests and isulin shots. But he is hanging in there.

Wow what a guy!!!!

August 16, Thursday

Joe is leaving hospital today.  Pictures coming soon!!!

August, 14 Tuesdqy

Good news.  Joe will probably be leaving the hospital thursday.  Almost 2 weeks since the operation/procedure.  He will be staying at kasa kosmalski for awhile.  Doing his own insulin shots now.  Removed another line into his body today!!!  One more line to go and Joe can truly come to his next stage of recovery. 

August 13, Monday

Couple busy days for Joe.  First early am training class on tube feeding.  Joe will be tube feeding at home for awhile.  Tube brings nutrition right into his small intestine to bypass stomach. He has a small machine (Named Joey Kangaroo) that times how fast the stuff goes in. 
11am the whole doctor team came into Joe's small room. 
Dr. Clavel pain doc reduced his pain meds again. 
Dr. Dunn the surgeon, took out Joe's staples (maybe 100 of them)  Incision 14 inches long and
a  tube draining his cavity around the stomach.  Ouch.
Joe has been walking and sitting.  Saturday Jim took him outside walking for the first time since surgery. Happy day.  Then a walk outside,  Had a dip in blood sugar which cut walk short but he learned how to handle blood sugar peaks and valleys.  Part of the drill during his recovery.  Finally 4:30 time for a rest.  oops. no here comes the nurse again.  I don't think Joe will really get much sleep until he leaves hospital.  Not an easy place to rest.

August 11, Saturday

Mother load has lost a  few lines today.  Insulin went up last night so they attached it again and backed off today at around 3pm.  so far so good.
The block that has been used since surgery day was just removed from his back.  I had to go out of
the room while they did this.  Joe pain is a bit worse but seems more comfortable without the lines going into his spine/back.  Physical therapy in bed today, Joe is pretty wiped out.  Doing an occasional  ice chip.  Nothing to eat or drink for over a week.  He is getting some nutrition through a feeding tube.  One of these days he will get that greek swandwich he has longed for since 2003.
ok nurse is back.   more later...

August 10, Friday

Joe is off the insulin drip.  They are trying to regulate his insulin injections with shots.  So far he is doing ok.  It will take some time to determine the right amount of insulin for him to receive.  He is off blood thinners and may be off the block in his back tomorrow.  See how his pain level is able to tolerate.  A little more tired today than yesterday.  OT just here to help him sponge bath first time since last friday.  We was happy last to see the posts to his blog and facebook page.  Keep those well wises coming in, he sure can use them.  It will be challenging recovery but he will do it..

August 9, Thursday

So far things are going pretty well. A number of the usual side effects of the surgery don't seem to be impacting him. So he doesn't have any nausea, he has some "movement" in his digestive system, and his blood sugars seem to be under control with modest amounts of insulin. But he has had some severe episodes of pain. The nurses say a pancreatectomy is one of the most painful  surgeries. This AM his pain seems to be under control, still with him but not debilitating. He has been up and out of bed and sitting in a chair  and is walking around the hospital floor.  Today, perhaps a shower.  And Physical therapy come every day.  Yesterday, he walked and did 2 steps. The nursing staff both in the ICU and in the transplant ward have been extraordinary. 
For the first time in 6 days now, Jim and Suzanne have both gotten 6 continuous hours of sleep and Joe has been hanging in there, dealing with pain and discomfort.  He continue to have a lot of lines in his body and on the mother load.  Maybe one will go off tomorrow.  A continuous insulin drip as Joe's blood sugars have been doing pretty welll.  Monitoring every 4 hours tomorrow rather than every hour.  this means Joe may also get a couple hours of sleep continuous.   I can tell Joe may be starting to feel better as he seems to be engaging a few of the nurses.  Talking about skiing and teasing them a bit.  

August 7 - Tuesday

3am
Joe was moved from the intensive care unit to the transplant floor last evening.  This means he is off one of the medications they used which needed constant monitoring.  He has a great nursing staff making him comfortable and tended to constantly.  No food, no water yet.  It has been 4 days.  He is however getting iv fluids to hydrate the body.  Still pretty weak and tired. Joe is using a directed imagery audio file made for him by his pain team.  It really helps put him into a good zone.  As the doctor said, 1/2 hour of relaxation is worth a lot of pain medication.  The body is an amazing machine.  To see him live without a pancreas, spleen or gallbladder is really remarkable.  Tesia stayed with him yesterday afternoon and caught this great image of as she says
Joe jam's....

tesia also documented "mother" (the machine keepin him in meds, fluids)

The fairview minnesota pancrectomy/auto islet team is amazing.  There is a group of doctors/specialists doing amazing surgeries here.  They deserve major recognition for the important work they are doing helping kids and adults with the torturous disease.  here is a website link describing the procedure and staff

http://www.uofmmedicalcenter.org/Specialties/PancreatectomyandIsletAutoTransplant/index.htm

5am

Home delivery: food for the tube feeding from nurse Keri, a real doll as my dad used to say.

August 6, Monday

Lots of doctors coming through today.  Endocronologist (diabetes specialist), room full of icu doctors (should have taken a photo). Laura M. stopped by with a good coffee and cookie for Jim and I just before the entourage of ICU doctors doing their rounds, entered room. Laura said it felt like she was in an episode of Grey's Anatomy.  Doctors communicated they wear little make up and this is the real world.
Joe has not had any of the typical complications so far after this type of surgery.  Doctors communicated this may be one of the painful and difficult surgeries that may be performed now.  Joe is a trooper and has dealt with the disease and its aftermath for some time.  He deserves this positive recovery thus far.
He is getting a constant insulin drip for keep his blood sugars even, not up or down.  Doctor felt he is getting a relatively small amount of insulin which means some of those islet babies may be starting to feel at home in the liver.  Time will tell but we will take whatever bit of good news comes our way.  Joe has been sitting in the chair for 3 hours.  Now, they are moving him back to bed which will be pretty painful as there are so many lines going into his body and difficult places.
He has had family in his room near him all the way so far 24 hours around the clock.  And has not complained or whines about any of this experience.  He has been no stranger to pain.  Now the new stage of life begins, or it began 3 days ago.  No food or water yet.  Another couple days.
here is part of the mother load giving Joe life fluids!

August 6, Monday

Monday Day 3 8/06

Joe is sitting in the chair right now.  in ICU and has a good 25 machines working and feeding and draining from Joe's body.  He has been sitting for an hour and a picture is worth a thousand words.

Cassidy is on the phone with Joe.  He slept through the night but woke up with a good deal of pain.  His para vertebal block line came unplugged last night, arg. Joe's, great anestesiologist discovered it this am,  He will be back in the room this afternoon and insert clean line and product in a couple hours. 

August 4, Saturday

Tesia is here!  We are all so happy to see her.  Joe is able to have mouth sponge with water now to wet his lips and throat.   We are so happy with his recovery so far. 

9pm
Jim explains this so well.

Hello:

Well yesterday, Friday August 3, Joe underwent surgery for removal of his pancreas (a pancreatectomy) and the results wer pretty good. It turned out that his pancreas head deteriorated to such a poor state that it had attched itself to the surrounding tissue so it was a painstaking process to remove it. Joe was in the operating room of 11 & 1/2 hours before it was all over. Another issue with the poor condition of the pancreas was that there were not many healthy insulin producing cells that could be taken from the pancreas and injected into the liver. So Joe is almost certain to become a diabetic. The the real success of the operation is that he will no longer suffer from the painful effect of chronic pancreaititis. In anticipation of severe post surgery pain, Joe's chronic pain doctor, his surgeon, and anesthesiologist developed a pain management plan that seems to be working. He had a fairly good night last night and seems to be managing his pain today. He is now in the ICU and will be transferred to a regular ward tomorrow or Monday. I expect he will be discharged in another 10 days.

Joe is at the University of Minnesota Medical Center, 500 Harvard St. Minneapolis, MN 55455.

JIM K

Aiugust 4, Saturday

Joe in the icu resting well and managing pain very well.  Vitals are good, glucose under control and he has started taking nutrition through a tube, which means Joe is finally getting some protein!!!Great news.
Jim thinks Joe's pancreas is now a coffee table somewhere and we like to believe it has a creative use rather than the problems it faced trying to work for Joe.
In ICU, Joe has the radio near his head listening to olympic sports coverage even as he sleeps.  Doctors stopped by early am and were in amazement as to how well Joe is doing.  Joe thanked them both for the care and work they have done for him.  What a thoughtful guy he is!!

Physical therapist coming in this afternoon to get Joe up in a chair. Charlotte stopped by hospital during surgery with a wonderful dinner and liquids for us last night.  What a treat that was and helpful to have her here.  she also had an opportunity to meet Dr Dunn after the surgery and agreed she was the best choice JOe could have made for this surgery.

More when the chair appears and Joe is sitting in it.

9 pm
Talked with Dr. Dunn, what a terrific doctor she is.  Surgery was difficult.  Joe's pancreas was in very tough shape.  It took a good deal of time to remove it.  Doctor found a good deal of scare tissue and it was difficult to extract the organ from its surrounding area.  She was however, able to get it out but as you might expect it took almost 12 hours for the full procedure.  The good news is that Joe's pesky pancreas is gone. And i think Joe will be happy to know doctor was very proud of the incision closure she created. 

In the recovery room and expect he will be going up to intensive care unit by 10pm.  Jim and I will be staying at the hospital through the night to give Joe support.  A long day but the good news, Joe is on his way to a better life.

Thank god for transplant doctors.

and as you look at the picture, it is difficult to figure out if mother is the patient?? And my god, do I look like Grandma Stahnke.  Good night all.

4:15pm
Joes reconstruction is finished.  they are waiting for islet cells to return for infusion and then the task is completed i suspect between 6 and 7 this evening.  today joe is winner, distance and olympic champion in Mom and Dad's life.

Good news:
Pancreas is off on its next journey from the operating room.  It has been taken to the hospital lab, secret location, where that pancreas will be sent through a centrufuge where islet cells are being harvested (doctor Dunn's definition).  We are hoping for many many cells but will find out in
a couple hours.  So this is good news.  update more in a few hours.
big hugs to everyone

2pm just talked with Louise, the transplant coordinator. Joe's pancreas had a lot of fibrosis. No wonder he has been suffering. Surgeons like thin people like Joe! Must make their work easier.

Joe started surgery at 8:15am today at fairview hospital. Two updates so far and it is going well. we hope to hear soon the pancreas is on its way to the lab for islet harvest.

11:15 am Dad/grandpa waiting waiting room.