In lieu of flowers, memorial gifts may be made to the Vikki Auzenne Memorial Fund (#3647050) at the Massachusetts Institute of Technology. Vikki and Joe shared a commitment to supporting MIT students and Joe has created this fund as a lasting memorial to Vikki.

Gifts may be made by check or credit card.

Checks should be made payable to MIT and mailed to:

Bonny Kellermann ‘72

Director of Memorial Gifts 

600 Memorial Drive, W98-500

Cambridge, MA 02139

Credit card gifts can be made using the following link:         https://giving.mit.edu/givenow/vikki-auzenne.dyn 

Feel free to contact Bonny <bonnyk@mit.edu> or 617-253-9722 if you have any questions about your memorial gift for Vikki.

In Loving Memory

Vikki Olson Auzenne

November 10, 1956 to October 28, 2015

Heaven has a new angel. She made our world a better place and she will be missed by all of us who knew her and loved her.

*******************************

In lieu of flowers, memorial gifts may be made to the Vikki Auzenne Memorial Fund (#3647050) at the Massachusetts Institute of Technology. Vikki and Joe shared a commitment to supporting MIT students and Joe has created this fund as a lasting memorial to Vikki.

Gifts may be made by check or credit card.

Checks should be made payable to MIT and mailed to:

Bonny Kellermann ‘72

Director of Memorial Gifts 

600 Memorial Drive, W98-500

Cambridge, MA 02139

Credit card gifts can be made using the following link:         https://giving.mit.edu/givenow/vikki-auzenne.dyn 

Feel free to contact Bonny <bonnyk@mit.edu> or 617-253-9722 if you have any questions about your memorial gift for Vikki.

JUST WHEN IT SEEMED LIKE THINGS COULDN'T GET WORSE, REVISITED.....

Last night, the CODE BLUE alarms sounded....no pulse, no blood pressure.  It took 15 minutes of CPR to restore her pulse.  Nobody knows what caused the event. They are pulling out all the stops to treat her and try to figure out what is going. For now, there are only questions....no answers.  When you add this new problem to her neurological issues, it is hard to find a good path to recovery for her.
I am not giving up on her, but I am beginning to think its going to take a minor miracle for her to overcome all of things that are going wrong....or maybe a couple of them.

JUST WHEN IT SEEMED LIKE THINGS COULDN'T GET WORSE......

I got to the hospital this morning to find Vikki even sicker than yesterday.  They did a CT of her abdomen last night and then decided to do a head CT  (no one called to advise me).  Today's problem list has gotten much more complicated and now includes:  pancreatitis and pancreas damage with possible bleeding in the pancreas; colitis; blood clots in the kidneys and kidney damage; blood clots in the spleen and spleen damage; a possible stroke with blood clots in the brain and possible neurological damage……multiple infections……ICU delirium and disorientation…..possible blood clot in the heart.  How on earth does a human being endure all of this and bounce back.

They have done an ultrasound of the blood vessels in her arms and legs looking for more clots. They have done a echo cardiogram. They are setting up to do a colonoscopy.  And they are planning to do an MRI of her head for more detail.

No results yet. No diagnosis.  No treatment plan.

It's been about two weeks since the last update.....two weeks of little progress, more challenges and more setbacks.  I haven't written much because I don't like sharing nothing but bad news.

Updates:  On the positive side, Vikki is able to do pressure support trials for 4-6 hours daily. This says that the lungs are working pretty well and she can breathe with minimal support from the ventilator....but only for limited periods of time.

But, she is not making a lot of needed progress in her respiratory recovery. She has tried using the trach dome - just oxygen with no mechanical support -  a couple of times in the past week or two. She has only been able to handle this for short periods of time. It's good that she can do this, but the short duration of each trial indicates she has a long way to go to get off the respirator.

Medically, she is struggling.

She has a pancreas infection, cause unknown. It is being treated but there is no good treatment for this. They are working on finding the right drugs. Sometimes they have to stop the tube feeding to let the pancreas rest. They believe she has lost of portion of her pancreas. They also believe there is some kind of fluid buildup around the pancreas that may need attention.

They are concerned that she may have some internal bleeding....probably minor, but enough that her hemoglobin has dropped several times to a level required a transfusion. They believe this may be associated with the pancreas infection.  Interventional radiology was going to attempt to block off the bleeding area but decided they weren't sure they could find it and didn't want to risk an invasive procedure.

GI is believes that the fluid build up around her pancreas may actually be putting pressure on the area that was bleeding and this may be helping to control the bleeding. They don't want to drain the fluid because they are worried that may lead to more bleeding.

The only plan they can come up with is wait and monitor her for changes. I finally had a good talk with the GI attending. This is a major referral center for pancreas treatment, so she is in the best place possible for treatment.  With that said, there is not much they feel they can do other than wait....and hope it gets better and not worse. They have told me that her type of problem could take months (yes, that's not a typo) to resolve itself.

Meanwhile, she is in a lot of abdominal pain. The pain has been limiting her ability to do all of the therapy activities that she should be doing to regain strength.

To add to her troubles, she now has some kind of colon infection.  That just showed up this week. They are doing cultures to figure out what type of infection it is and how to treat it. They have stopped one of her anti-rejection drugs that could be causing this new infection. Now, they have to find a replacement for that. This is another wait and monitor issue. They have talked about doing a colonoscopy to take samples for testing, but they are worried that her colon is too inflamed and that they could possibly cause damage with the scope.

She has reverted back into her state of encephalopathy (the delirium) with all of these challenges. We can't tell what's going on...whether she just wants to block everything and everyone out or whether there is a clinical cause for this. Whatever is causing it, she has basically been totally withdrawn for the past three days. She will open her eyes when you speak to her, but she will not respond or acknowledge. She won't smile. She won't squeeze my hand. She won't write notes on her pad. There is no way to get any response of any kind from her. I tried playing Jimmy Buffett tunes yesterday....that didn't work. I am running out of ideas.  And of course, this is another challenge for the therapy team as she won't cooperate with them.

So my life has become 10-12 hours of bedside sitting....talking to multiple doctors...trying to understand what's going on....and hoping for some kind of good news for a change. We had a big care conference with the attending docs from 4 different teams that are treating her. I am pretty confident she is getting the best care they can provide.

The thing I can't understand is why this is happening to my lovely, caring and compassionate wife. I can't think of anything she has done in her life to deserve this kind of crap being heaped upon her day after day after day. If there is a god, why is this happening to her...and why isn't he answering the prayers of all of her friends and relatives. What is this world has she done to deserve this and when is she going to get a break. I thought getting the new lungs would be the beginning of a new chapter in our life, but I did not expect that this chapter was going to be such a nightmare.

Here is the jellyfish globe.  The photo does not really show how beautiful this is.

Gotta love this smile!!!!  Vikki can light up the room with her smile.

Today was a very weird day.   I got to the hospital to find Vikki awake, alert and actively communicating. She had filled up a couple of pages with notes and questions. She seemed to think she was back at work and was writing some messages about needing the reset all the IP addresses and reboot all the systems, which was hard to follow.

She spent some time up in the chair and did a pressure support trial for about 2 hours.  She opened her anniversary present...the "sideswimmer jellyfish" artglass that I got for her after our trip to visit Candace in Charleston. She was quite surprised.

Later in the day, she seems to get more confused.

She was convinced she couldn’t breathe even though her O2 stats were at 96% to 98%. She was also convinced the respirator was controlled by IT and needed to be fixed by the IT help desk.  She kept asking us to get someone to reboot all of the equipment and reset the IP addresses. I have no idea where all this was coming from and could not convince her that everything was OK.

She also said she needed her home oxygen, even though she was on the respirator and her O2 stats were fine.  So her nurse got a cannula and connected her to the wall oxygen supply, along with continuing to use the respirator. We turned the flow rate up to 6, which is her normal setting when sleeping at home. Even with the additional oxygen, she was convinced she couldn't breathe and kept asking us to contact the network help desk and reboot the systems. I couldn't convince her that she was getting enough oxygen.

        The GI docs had stopped her tube feeding for a couple of days because of the pancreatitis. They hoped that this would allow the pancreas to rest and recover. Vikki was writing notes to the nurses about not having received food or medicine for the past two weeks. We kept trying to convince her that she was getting all of her medicine and that the feeding had only been suspended for a couple of days.

         

      Vikki also was very upset about her nurse from several nights ago. She wrote a whole series of notes about the “evil nurse” who had pulled out her PICC line and was trying to send her to the psych ward, or the psycho ward as she called it. She kept writing notes about the "evil nurse." We were finally able to convince her that the evil nurse would never take care of her again.

      Vikki was also writing notes indicating that she was having PH symptoms again. She wanted her PH medicine back. She kept writing notes that she knew what the symptoms were and she was sure she was having them. She asked the doctors to give her a right heart cath. I was able to calm her down by telling her we would get Dr. Pritzker to check in on her.

      She got really upset a couple of times that no one would believe her. At one point, she started worrying that she was dying.  I did everything I could to calm her down, with help from her nurse Emily and one of the residents.

      I finally left with a splitting headache…compounded with the confusion of how to help her. She would not listen to reason or logic, and there was no way to convince her that she was doing well and that all of her equipment was working just fine.

      Another example of ICU delirium.  Let’s hope for a better day tomorrow!!!

IT'S BEEN A WEEK WITH LITTLE PROGRESS AND NO POSITIVE NEWS.
Mr. Snoopy is still on duty and watching over Vikki to keep her spirits up.

Our anniversary was a non-event this year....the presents are still in the corner of the room waiting for better times.

It's been a tough week for Vikki.

She has a new infection and they are working on figuring it out and coming up with a treatment plan. That's not helping her breathe like she needs to.

She also has a lot of excess fluid around her lungs. That's not helping her breathe like she needs to. She ended up back in procedure room yesterday, where they drained fluid and put a chest tube back in to keep the drain going for a few days.

She is suffering a bit from ICU delirium. Google it and read about it.  It's scary.  They say it affects as many as 80% of all ICU patients. They get disoriented and confused....even angry at times.  She seems to be in her own little world right now and we just have to keep reminding her of the when, where and why of what's going on.

The pulmonary team told me earlier this week that she is the most complex transplant patient they have treated in the past year, so we still face a long and challenging struggle.  The good news is that she can sustain herself when they do breathing trials, and I think that means the new lungs are working as needed. But the complications keep coming....first one, then another and so on.  And until they get some of these complications out of the way, they are limited in what they can do with breathing exercises as well as physical therapy.

There is a pretty good chance we will celebrate Thanksgiving in the hospital.  Its going to be that big of a challenge to get her in a position to move to rehab.  This is not the outcome we were prepared for, but its still better than the alternative if you know what I mean.

PS:  IT’S OUR ANNIVERSAY…..8 YEARS!!!!!!!

 

Got to the hospital around 10:30.  Vikki is clearly not herself.  She is heavily medicated. She pulled out her PICC line last night. She was extremely restless and agitated. Her heart rate and blood pressure were at alarming levels.  This morning, she does not recognize me and does not respond when I try to get her attention.  I don’t think she even knows who I am this morning.

 

The doctors finally made rounds. The new ICU attending is a pompous, arrogant SOB…..he just confirmed my opinion that these guys are running a factory with no personal concern for the patient.  He dismissed or interrupted every question I asked. He contradicted what the doctors before him have said, and dismissed me when I tried to get him to explain.

 

Now, they are worried about spots that showed up on xray….plan to do broncoscopy this afternoon.  Magically, they aren’t worried about the fluid around here lungs (that the prior team WAS worried about) and magically, they now say her pancreas issue has been resolved (I need to hear that from GI since they are supposed to be managing that treatment).

 

The care coordinator had arranged the care conference I requested for this afternoon, but I had them cancel. There is no point in getting in the room again with this guy…..he is the epitome of an arrogant world class jerk.  Trying to have an interactive dialogue with him would be a waste of time, and it would probably make me even more frustrated than I am now.

 

Unfortunately, we are stuck here and stuck with this jerk for the next two weeks.  If I could move her, I would certainly try to figure out how.

 

October 4....Day 27   Reflections on the Weekend


It has been a tough, challenging, emotional weekend.  I spent the weekend here - did not go home Saturday night just to stay in touch.


First, we have been trying to diagnose the neurology stuff. The neuro docs have talked of blood clots and evidence of a small stroke in Vikki's brain (very small and not significant). They did another scan late Saturday afternoon to check the blood flow in her carotid arteries, worried about possible blockages that could lead to more problems in the future.  We have been waiting that one out.  We saw the neuro attending late Sunday morning and learned there is some blockage but not enough to cause concern and not enough to require intervention.  Vikki takes aspiring and they think that is enough to prevent any possible complications at this time.  Another bullet dodged!!!


Next, we have the GI stuff.  They have been looking for pancreatitis and trying to determine how severe it might be. She has several enzyme levels and other markers in her lab work that suggest she may now have this problem.  They did a CT scan with a contrast dye late last night, and we have also been waiting that one out. We haven't seen the GI attending today, but the ICU team went over the test results as they interpret them. The tests confirm mild pancreatitis....cause unknown. It's a digestive disorder, so they have stopped her tube feeding. That is apparently common treatment. They also changed one of her antibiotics. Her numbers were closer to normal today, so they are "fingers crossed" that this will be resolved in a few days.


Meanwhile, she is in pain....and its limiting her desire to work with rehab and her ability to do pressure support trials for any extended period.  In addition, they have determined she has an uncomfortable amount of fluid around both of her new lungs. That is going to have to be drained...as soon as they feel the pancreatitis has been resolved.  The drains involve a trip to interventional radiology, where they will put in a couple of small catheter tubes and keep a drains going for a while.


There is no shortage of challenges trying to recover from this surgery!!!!


The good news of the day is that Vikki is feeling good. She asked if we could put her in a wheelchair and take her out of the room for a while. That involves getting a special portable, battery operated vent and getting an escort from respiratory therapy. But the staff made it happen and we took a long ride around the 4th floor and then the 6th floor. All Vikki did was ride, but I think she was so happy to be out of bed and out of the ICU room.  Big smile!!!  And she had a chance to exchange High 5s with some of the nurses who have taken care of her in the past. It was a great feeling to get out and she how much the staff in the hospital care and how excited they were to see her out and smiling!!!


Now, if the Vikings can just find a way to beat Denver

October 4th.....Day 27

Up and in the wheelchair for a ride around the ICU, a visit back to the Surgical ICU, and a visit to our former "home" in Unit 6C.  Still using the respirator, but this is Vikki's first day out of a hospital room since surgery.