February 26, 2020

I  had a nice phone conversation with Jeanne today.  Jay had set up the phone and turned on the speaker. She had been moved to the rehab center.  She will have PT, OT, Speech and whatever else they feel that she needs.  She is getting stronger but she still has the numbness.  This makes all the fine motor skills very difficult.  They will be working her in 1/2 hour time slots until she builds up her endurance.   But she can eat real food (just needs to be fed still) and she can wear her own clothes, so she feels more human.  Since she can talk and use the nurses call button she does not feel so helpless.

I think that I  will try to make Thursday my day to update this blog. 

We are starting  to hear more about the Coronavirus, but it seems very far away.

February 25, 2020

Jeanne continues to improve at an amazing rate.  She had her last plasmapheresis treatment on Monday.  They checked her swallowing ability and pronounce her ready for actual food.  Great.  She is not quite able to feed herself yet.  She has been seen by PT, OT, Speech Therapy, and the rehab doctor and they are all impressed.

The current plan is to move her out of the intensive care floor and into the regular neurotrauma floor today.  The next move will be to the rehab unit.

Jeanne can now reach up to touch her hair, hold a menu and wiggle her toes.  She has a 5 pound pinch (normal is about 65).  She is not quite able to feed herself.  They were going to move her out of ICU but there was not a bed available.

Her next move will be to the rehab unit.

I will try to do a weekly update at this point.   But I will do more if I hear more.

Sunday

Laura arrived about 10 pm last night.  It was fun chatting with her.  Jay and Ben came to our hotel for breakfast.  Laura treated.  Ben has started this new thing of "surprise me."  He lets the waiter choose what he should order.  This morning he got an eggs Benedict with extra stuff.  Then I checked out from the hotel.  We headed over to the hospital.  They were getting everything ready for taking the tube out.  They had planned to do that around 10 am.  It was pretty close to that when they came in to extubate her.  

Yippee!!  Frabjous Day!!  Jeanne was so happy.  We were so happy.

Jeanne, Ben, me Laura and Jay

Laura and Ben

Happy Jeanne!!

She could communicate, though only a whisper. They did not want her to strain her voice.  Today passed much quicker.  Fun to have Ben and Laura together.  

We went down for our lunch in the cafeteria.  Then Jay took Ben to the airport.  We hung out with Jeanne.  She was getting pretty tired and it was time for Jay to take me to the airport so I said my good-byes.  I was so glad to be there when they took the tubes out.  Made my day!! Best day ever.  No food for Jeanne today.  They will test her swallow tomorrow and go from there.  The current plan is one more plasmapheresis treatment tomorrow.  

Jay dropped me off at the airport.  Duluth doesn't like me.  Went through all my stuff and I got frisked and swabbed my fingers.  I bet it was all the antiseptic hand sanitizer stuff we had to use all the time. /  

The flight home was uneventful.  

I bought dinner on the plane and managed to snag a free glass of wine.  I think the flight attendant just forgot to come back to charge me.

New art installations at the Portland Airport.

George met me at the airport.  I was home by 10:30 pm.  Gemini took 3 seconds to pee in my suitcase!! Welcome home!!  Ugh. 

Saturday

In the stairwell of the hotel it had a sign up about the roof top.  So I decided to check it out. I took the elevator to the 16th floor and then went up 2 more floors.  The door was locked so I guess that it was not open to the public.  As I was leaving a worker bee asked if I needed something.  I said that I was looking for the rooftop to take a picture.  He unlocked the door for me to let me out to where I could take a picture.  That was nice of him. I was hoping to catch the sun coming up but I was a little too early for that.  

 

They have a nice pool on the 8th floor.

Since it was so balmy I waited for Jay in front of the hotel

I got my sunrise picture.

Duluth has quite the skywalk connectors.  Reminds me of Minneapolis and Montreal.  No time to explore them now. 

I had a small breakfast again.  Then we headed off to the hospital.  

They started talking about pulling the tube out today!!  Really got Jeanne's hopes up.  They had her sitting up and did the weaning.  But no, they decided her cough just wasn't strong enough.  They thought that her breathing was fine but if she can't cough then her risk of returning pneumonia is too high. But the current plan is to remove the tube tomorrow morning.  I sure hope that happens and that it goes well.  She was so disappointed today.  But every day she is stronger.  She can lift both hands off the pillow unassisted, though not very high off.  This evening she started being able to roll her legs in and out.  That was new. 

Jay and I are both lousy spellers and guessers with Jeanne using the communication board.  Jeanne is like Jeanie W in that she wants conversation when we are spell out words, not just expressing needs.  

Lunch was down in the cafeteria again.  Salad bar is the easiest thing.  Ben read some more short stories.  Then Jay started an audio book.  We did not finish it today.  I have my book, my puzzle book and my tablet.  So there is plenty to do.  But Jeanne's room is cold.  Jeanne is hot and needs the fan and ice compresses and we need our coats.  And the chairs in the room are not very comfortable.  

We went to the India Palace for dinner.  It was very good.  But I would not go back there for the wine.  They all had weird names, like Polka, Promenade, Jig, and Cha Cha ....  I had a Conga "The nose is mostly berry with a spice finish.  The taste seems complex. We taste persimmon, pomegranate (not to get snooty about it), red licorice and leather.  We taste blueberry on the front of the tongue and a spicy tingle at the back, and vanilla.  One of our tasters said it "makes you want to dance" ... Goes well with Makhani and Korma."   I am not sure that I tasted any of that.  

After dinner we went back to see Jeanne for a little while before leaving.  Tonight Laura will arrive.  She will stay in my room.  Then tomorrow Ben and I both leave.  Jay will have 2 trips to the airport because we are not leaving at the same time.  

Laura just arrived.  That is nice.  

Friday

Ben arrived around midnight last night so he was with Jay when they came to pick me up in the morning.  Ben had not seen his mom yet.  Jeanne was happy to see him.  All the staff seemed to talk to him since he is a doctor.

I just had a bowl of cereal for breakfast at the little hotel cafe.  The hotel also has a nice restaurant and bar.  I have only gone there in the evening for my glass of wine.  The menu looks good.

It was a busy day for Jeanne.  Ben read a couple of short stories to her.  They were pretty bad.  The PTs came in to exercise Jeanne.  They did a bunch of exercises and they also got her sitting up for a little while.  She does not have the trunk support yet to stay sitting.  We did not get to see it.  They kicked us out.  But they did comment on her increased strength.  She can now lift her left hand off the pillow a couple of inches. We sat in the family guest room while they did their thing.  They came to tell us about her improvements.  It was nice to hear that I was not way off base with the things that I had been noticing.

After visiting a while the nurses came in to get her ready for the plasmapheresis treatment.  They sedated her for that.

Not a very good picture, but this is the plasmapheresis machine.  Her blood is pumped out, treated and then pumped back into her.  It  takes about 2 hours.  Once this was going on we went downstairs for lunch.  Then Ben went to go for a run and he stopped by a book store to get some other short story books. He went to my room after running, to shower.  His hotel with Jay is further away.

Because of the PT and the plasmapheresis they did not do the weaning until about 5 pm.  She went around 4 hours this time.  Not bad with all the other stuff she did.  Her cough and breath inspiration are both stronger.  Ben read some more.  Much better choices of stories.  

We headed out for dinner around 6 pm.  We had heard about a steak place sort of close to the hospital.  The woman that was raving about it was funny.  After raving about the steak she says she always orders the Chicken Kiev.  LOL.  Anyway, we decided to check it out.  Hammond Steakhouse.  It was in Wisconsin!!    It was quite good.  I had the steak, baked potato and salad. Ben ordered the cheesecake for dessert.  I enjoyed it as well. We shared a bottle of wine.    The restaurant was on the second floor.  First floor was the bar and the grocery store. 

This is a tree in the middle of the restaurant. The restaurant had a lot of personality.

When we got back, Ben read one more story before we were ready to leave and she was ready to be set up for bedtime.

Several doctors came to talk with us today.  Naturally they do not agree.  But they do agree that they will wait until Monday to decide about the trach.  They will be looking at how strong a cough Jeanne has and how deep a breath she can take.

Today was practically balming.  It got up to 37 degrees!!

Thursday

I was down at the breakfast cafe at 6:30 am when it opened.  I had an omelette bowl.  Interesting way of cooking an omelette.

View from my window.  See the little sliver of the moon with the sunrise.

Jay picked me up at 7 am.  It is so cold that my pants feel frozen just walking to the car.  It is cold!!  

This is the view from Jeanne's room.  

They had the respirator turned off for about 10 hours today!!  She kept her breathing levels up to where they were supposed to be.  The big test is how well she can cough.  Can't do that very well yet. They are still talking about putting the trach in.  She made a lot of progress in the movement of her arms today.  Baby steps but every little thing seems like a giant step.  She can almost bend her elbows.  Shoulder shrugs are getting stronger and finger movements in both hands.  No movement in her legs and still minimal feeling.  In a way it is a good thing, since she normally can't stand for people to touch her feet.  We had some frustrating times of trying to figure out what she needed.  I am getting a little better at guessing and learning the signals. A lot of repeated blinks means she wants the communication board, rolling her eyes 3 times means she wants the nurse - usually to be suctioned.  There are others.   

The nursing staff seems to be friendly and they are responsive to Jeanne's requests. There seem to be a high percentage of male nurses in the Neurotrauma ICU. I felt for the guy in the room next to Jeanne.  I don't know what his problem was but he kept shouting "Come help me, I need a drink ... NOW!"  

Jay and I went to the cafeteria for lunch. They had a nice salad bar.  That is what I had.  In the afternoon Jay played an audio recoding he had downloaded.  It was a historical fiction story about Amelia Earhart.  It was very enjoyable.  

For dinner Jay and I went to Bellisio's Italian Restauranat.  It was close to the hospital.  It was delicious.  

Chicken Marsala with brussels sprouts and mashed potatoes.  

Creme Brulee

It had a Tuscan feel to it.  

We went back to Jeanne's room for about an hour.  Then it was time to get her situated for the night, so we left.  Jay dropped me off back at the hotel.  There is no way that I could walk, even though it is only 0.8 miles.  My only exercise is that we are doing the stairs whenever possible.  

Ben's flight has been delayed.  He had gone to Tampa to present a paper today (well he flew there on Wednesday) and then is flying here via Chicago.  He was supposed to arrive at midnight.  I don't know when he will make it.  Then Laura will come on Saturday.  It will be a nice family reunion.  Weird to be together with no kids.  I am not sure how we will all fit in that room.

This their motto.

Portland to Duluth

My flight out to Duluth was pretty uneventful other than having to get up at 4 am!! I had made a sandwich for my breakfast for the flight.  I watched Frozen 2 and enjoyed it.  I had a light lunch in Minneapolis.  I had to walk from terminal G to A.  Quite a walk.  But that was about the only walking I did today.

What is all this white stuff??? 

Jay met me at the Duluth airport.  But I must say I was not prepared for the cold.  My brain just does not comprehend -5 degrees.  I went out briefly to check to see if Jay had arrived and I had to scurry back inside and put my hat and gloves on before going out again.  He took me to the Holiday Inn so that I could check in first and then we went to see Jeanne.  

I am go glad that I came.  But it is so hard to see her struggle to try to communicate.  they have a communication board which helps some but not much.  Reminds me of Jeanie Waterbury.  I asked Jeanne if it were ok for me to blog and she said yes.  

How many medications does one person need!!

Jay and I hung out with her until about 5:30 pm and then we went to Outback Steakhouse for dinner. Then we went back and stayed with her until nearly 9 pm.  She could wiggle her fingers on BOTH hands this evening.  She can shake her head and shrug her shoulders.  

The staff all seem very supportive and friendly.  They are pretty attentive to her needs ... most of the time.  It is hard to remember that they do have other patients here as well.  

I haven't met any of the doctors but I guess they normally come in the mornings.  

Jay dropped me off at my hotel and then he headed to his hotel.  I am at a very close hotel.  His is further away but it is cheaper. 

My hotel has a bar so I went and got myself a glass of wine so that I could come back up and blog a bit.

Like I said before, I am so glad that I came, even though it is difficult communicating and it is painful to see her in this helpless state. I am not sure that I am any help.

She can get mail so if anyone wants to send cards.  She enjoyed the cards that I brought with me.  Pam, yours arrived in time so I brought it.  

St Mary's Hospital 

Neurotrauma ICU #8276

407 E 3rd St, Duluth, MN 55805

Thank you all for your good wishes.  This will be a long slow process. My spell checker seems to have disappeared so I am sorry about any errors.

  

Review

Since this is going to be a long haul I decided to create a blog for Jeanne.  The following is just a review of what has gone on.

Saturday, Feb 8, 2020, Jeanne noticed some tingling in her fingers.  It soon progressed to numbness and  some weakness.  Jay took her to the Ely hospital on Sunday.  She felt a little unsteady when she was walking in.  They ran a bunch of tests but nothing came up.  They tried to send her home but by then she  could  no longer walk.  So they had Jay drive her to the Duluth hospital with the diagnosis of Guillain-Barre Syndrome on Monday.  

Guillain-Barré (gee-YAH-buh-RAY) syndrome is a rare disorder in which your body's immune system attacks your nerves. Weakness and tingling in your extremities are usually the first symptoms. These sensations can quickly spread, eventually paralyzing your whole body.  If you want to find out more go to the Mayo Clinic site.  Usually there is complete recovery but it is very slow.

She was admitted to  the St Mary's Medical Center Neurotrauma ICU.  They started her on 5 treatments of IVIG (intravenous immunoglobulin).  By Friday 14th she could no longer move anything and she had to be intubated because she wasn't breathing well.   This also meant that she was sedated and was not communicating. 

Sunday, Feb 16th she came down with pneumonia.  Jay has been by her side constantly.  Laura (their daughter) arrive on the 15th.  She can only stay a few days.  She also started plasmapheresis treatments.  She will have 5 of them, one every other day for 14 days.  She is sedated more during that treatment.  Jay has been able to get back to Ely, while Laura has been around.

Tuesday, Feb 18 she has started gaining some movement in her arms.  Still no grip but she has movement.  She can shake her head for yes and no.  They are talking about doing a tracheotomy but no decisions about that as yet.

Tomorrow I will head off to Duluth to be with Jeanne.  I will update more then.