Thursday, February 28

Yes, yes, I know, it has been way too long since I have blogged and I've missed it a lot.  But it has been way to hectic since we've been home.  And today, after working Monday, Tuesday, and Wednesday, I am home sick with a stomach bug and very miserable.  Throwing up and having dry heaves along with a headache is not what I had in mind for today.

John is doing is "laps".  He gets out of bed alone and walks down the hall, through the living room, around through the kitchen and dining room and back to the bedroom.  The other day he did 11 laps.  Stairs he has done only with the physical therapist.  He needs someone with him when he does them.

Doctor's follow-up appointment start next week with two in Rolla, then on Monday the 11th in St. Louis, we have three appointments.  Sigh....

That's about all I can do right now.....

Sunday, February 24

With a humidifier, Mucinex, nose drops, John sleeping with his head up, and the grace of God, we had a much better sleep last night.  This morning, we've done the IV infusion with just a bit of a challenge, have had breakfast, and pills are going down. 

Robert Wagley, John's boss, stopped and visited with us at the hospital on Friday.  He took this picture of the three of us, just before Natasha left to go back to Dayton, OH.  It's the last picture of us at Barnes Jewish!

Appreciate our sunny home....it's bright and cheerful.  We've had lunch (baked potatoes and corn and delicious cottage cheese loaf from Lynn, spinach salad, and Cherry Garcia ice cream by Ben and Jerrys.....um, so good) and John is walking around for some exercise.  He needs to do some stairs, too.

I did take a small walk this morning just to the end of our street and back.  I also went to Aldi for some fresh food.  Funny thing is, I had just bought a bunch of groceries before this happened so I had Benita help herself.  Thankfully there was still some fruit left, so we could get by until today.

Rest of the day was slow and restful; John made some phone calls.  Each one exhausted him but he was glad to connect with a few people.  He even did his first facebook post.  I told him about some of the beautiful prayers and words that people shared with me, told him some of the events of those ICU days that he does not remember...

We talked to Gary and Cyndee Watts, great old friends who have been standing with us through all this.  Gary is an OB GYN doctor and has an ICU doctor friend who knew what was going on with John and gave him 1% chance of surviving...Thank God, HE is the Great Physician!

........................

It's Monday morning and I'm up, raring to go....hoping to get John's infusion done so I can go to work for a couple hours, come home and be here for him for a while, then return after lunch for another two hours.  That's the plan and we will see how it works.

Sabbath, February 23

After a poor night's rest, John and I are resting comfortably at home.  The day is bright and shiny and our home is lovely for enjoying it.  The home health nurse was here admitting us this morning; took two hours and took it all out of us!  A nurse will be here a couple days a week as will a physical therapist.  I will be administering the IV antibiotic, which Erica taught me this morning.  I also have great support from friends, several of whom are nurses, too, and would gladly help if I had questions.

Made mashed potatoes for John which he said were "divine".  There is so  much to do getting stuff put away, cleaned up, and organizing medical supplies....ugh! 

We are sitting on the couch...oh

joy!  Just read through all the cards that people have sent...a whole large envelope full.  John is amazed and blessed with the love flowing through to him from people everywhere, me too.

There was a lot of snow here but when we arrived, our steps and driveway were all cleaned off, thanks to Dom and neighbor Randy.  So much sun today is melting it all pretty fast, I'm afraid.



Karissa called while we were sitting on the couch.  She will come after her Florida Spring Break for three days, which will be lovely. 

Rosie has been so glad to see us.  She came up on to our bed when we were taking an afternoon snooze.  She crawled into my lap when I sat down on the couch.  And just now, she came up onto our laps on the couch.  The picture below was to be a nice closeup of her.  Can you tell she is camera shy?  Ha!

John is taking another walk around the house.  We don't have the nice long hallways we did at the hospital.  But, we sure prefer this to that!  He just goes around and around in circles.

So, despite the poor night's rest, we are delighted to be in our own home.

Love to you all...

Friday, continued...

The patient is tucked in all cozy and warm in his own heated bed and warm bedroom.  He is comfortably lying on his side after an excruciating ride home since his tailbone is so sore.  Medranos were our welcoming committee, the garage was open, the lights and heat on, and the driveway and walk all shoveled, with the help of neighbor Randy.  Good Neighbors are such wonderful blessings!

The house looks like a disaster because of my carload of STUFF...seems like spontaneous generation happens in a hospital room. It will take some time to get stuff put away and organized.

Feels wonderful to be home where we belong after 40 days away....so much to be grateful for.  The night I hurriedly packed, I realized that I might not have a husband to bring home....but praise God, I do!

Pictures soon....

Friday, February 22     D Day --  Discharge!
Day 40

Our 40 days here at Barnes Jewish Hospital are coming to an end.  After more than a week of going back and forth about discharge plans between going to rehab or skilled nursing facility or going home, we chose to go home.  John will be able to sleep better and we will have good home-cooked food.  This last week he has strengthened considerably and is well motivated to continue his regimen at home.  We will have some in-home support from home health and physical therapy.

Can't say I don't have any fear and trepidation about it, because it will be mostly on me.  It just seems to be best for John.  I was hoping that Natasha would come home with us for the first day or two and that she would help ease us into this but she has to leave...poo!

So the process will probably go slow today and we know enough not to rush it.  But maybe near dark we will get home. 


Some funny things John said...Juli, my sister recorded these while still in ICU and just sent them a few days...

John

I just love being in the hospital. They're keeping me alive.  Big smile

Now I understand the purpose of all this. Without it they wouldnt be able to save people. Physically that is. 

Jennifer (night nurse):  You are the most honest woman here. 

I love you too jennifer just in a different way. 

She explained to me why i couldnt have ice cream. 

You know what my problem is? Ive been a little too shallow in my ability to recognize love. 

Whoever started the dialysis, give them a kiss for me. 

One night in ICU, John watched a guy coming in and out of the next room and it was bothering him:  we finally told him it was the nurse, so he apologized, saying:  I was misjudging him. I thought he was a garbage guy. 

See i needed this experience so i would be more compassionate. 

I want to thank the people who put me on dialysis. 

I've changed my mind about hospitals - they're as good as church

Thanks for writing it all down, Juli.... 

We are just waiting.....

Thursday, February 21
Day 39

Yesterday was another "high" day with great forward progress.  John says it was because he slept so well the night before.  He also had a good long morning nap of about 2 hours with no interruptions.  I left here about 6 in order to meet Natasha at The Lodge so she could park.  Then we came back here for a couple hours till John was ready for bed.  She was amazed at his progress since she has not seen him since he came out of ICU, about three weeks ago.  We took a few pictures and I will post them here.

Last night, John's  chest hurt him, he coughed a lot, and therefore slept poorly.  And today, he does not feel as strong.  Our Physical Therapist was just here and first took him to the stairwell where John was able to go up about five steps.   Then he worked with John to build his leg muscles in order to help him to get up out of a chair or off the bed.  That was a good long workout and though John didn't feel clear or strong, he did very well.  The Therapist will note that he is able to go home and that some in-home Physical Therapy will be beneficial.  He will come back and work hard with John again tomorrow.

When John wanted some hot chocolate, we suggested that we walk to the machine.  He took his walker this time and we walked the distance there.  John sat down and rested and pretty soon was ready to walk the whole way back.  we will repeat that several more times today since these relatively "long-distance" walks will strengthen him the most, help his lungs to clear, and are the most therapeutic of anything.

Natasha is working on school work.  John is taking a one hour snooze.  I'm starting on my blog for the day.  Didn't do too well yesterday.

Two things we really desire:  good home-cooked food and good sleep for John.  Home is no doubt the best place for that.  Even our doctor said yesterday that he feels John is a good candidate to go home because he is motivated.  Some who go home, who have been progressing nicely here while doing the long hall walks, go home and do nothing but walk from their chair to the refrigerator and thus do not make good progress.  John, on the other hand, will not just sit.  He will work hard and will walk often and as soon and as often as he can, he will want to go outside to walk in the fresh air and sunshine.

Our Social Worker is working on all of our options this morning and plans to come and talk to us as soon as she has something to present to us.  This morning, they are waiting for the physical therapist's notes and the occupational therapist's notes.  A home plan is also being developed.  These notes will be read by our potential facilities and by our insurance company and together they decide what the best plan is for us.

We just bundled John all up in the wheelchair (first time!) and took him on a long ride through the covered walkways throughout this campus.  It was Natasha's first chance to see the area, too....I enjoyed it. 

We are looking forward to getting lots of snow with this storm!  it has already started and it is pretty close to whiteout conditions out our 7th story windows.  It's easy for us to want it cause we have NO WHERE TO GO!

Not until tomorrow at least!

Wednesday, February 20
Day 38

It's a cold morning, with wind, like yesterday.  I still walked here from The Lodge and the fresh air felt good but the wind went right through me.  John is eating breakfast now but was ravenous when I arrived.  I had almonds and granola so he had some things to eat before his tray arrived.

Food has been a problem.  At first he was on a cardiac diet: low Salt, lite margarine...why?  His was not a cardiac issue.  Then with the diminished kidney function, a renal diet; no potatoes, tomatoes, oranges, bananas...all are too high in Potassium.  Repeatedly the renal diet has been discontinued but it never makes it into his chart.

Sandra Diaz wanted to drop off some food and asked what I wanted:  BEANS!  LENTILS!  So on Monday, I fed John some pinto beans. He said, "This is the first real food I've had since I've been here!"  Today we tried her lentils and again he exclaimed at how good they tasted!

Natasha should be here by evening.