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.....
Thursday, February 28, 2013
Monday, February 25, 2013
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.
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.
Saturday, February 23, 2013
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!
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...
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!
So, despite the poor night's rest, we are delighted to be in our own home.
Love to you all...
Friday, February 22, 2013
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!
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!
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...
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.....
We are just waiting.....
Thursday, February 21, 2013
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!
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.
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.
Wednesday, February 20, 2013
We see gorgeous sunsets out of our windows in this new room. But, the full sunset is just out of view. Tonight, however, the sunset was perfectly reflected in the windows of the building behind us. The pictures do not truly show how beautiful the reflection was but it does give you an idea. Most of the buildings in these two pictures belong to Washington University School of Medicine. I can reach those buildings easily by walking along the covered walkways that connect our buildings to the many others in this large complex.
The the social worker asked if we might want to go straight home instead of to Rehab or a Skilled Nursing Facility. Would we?! I knew what I wanted but thought I should ask John. He had no hesitation, either. He wants to go home. The physical therapist also thought he was right on the border of being ready to go home.
We are NOT holding our breath but we just might be there before the weekend. With a couple more days recuperation, we should be ready to go. We still need to ask our doctor but he just might be convincable!
Wednesday morning...
However, several friends (2 of whom are ICU nurses) have advised us that it is definitely too early to go home. John needs to gain strength. Right now, at the press of a button, I have help right away. At night I go away to sleep and the nurses care for him totally. Their advice is that unless I have 24/7 nursing support at home, it is too soon. I appreciate their input....I asked them because I trust their judgement. My friend from grade school, Linda Fuchs, also called and was pretty horrified when she heard we might be headed home. She went home a week after her knee surgery. Her family had a hard time providing the level of care she needed. So, she also cautioned against going home too soon. Now that I am thinking about it, I can see it might easily be too much.
We will see what today brings!
Tuesday, February 19, 2013
Tuesday, February 19
Day 37
some time for the repair to take place!
We've already walked once this morning, just John and I. We had to take along the IV pole because they are giving him a unit of blood.
Yesterday, we had some wonderful visits from friends. I had invited David and Becky Dearborn, mostly because I wanted to see my friends! They were both delighted to be able to visit with John.
After a short visit with him, we went to the waiting room and talked a while longer. I had to leave for a few minutes because Sandra Diaz dropped off some pinto beans and lentils because I have been craving some beans and legumes. In her package was also a bunch of Valentine's cards from our Rolla Church family and some granola from Lynn Rosette. Thanks, Sandra!
David and Becky wanted to go to lunch so we walked to the children's hospital cafeteria. It is a pretty location and does have good food.
Later last evening, Dom and Marilous and EG Medrano and Johnny Ruck showed up. After a pleasant visit, they left, and John was ready for sleep. When I got back to the Lodge, Pat had moved into my room. I had asked for a roommate if there was someone who needed a place. That keeps my expenses down. I was so very tired and ready for sleep by 9. Her son is 21 and in the hospital for possible Lymphoma so she did not make it back to the room till almost 11. I introduced myself and talked briefly and then of course could not go to sleep. John also had a bad night. He'd had a respiratory therapy treatment just before bed and he was kept awake with coughing. So we are both pretty wiped out today.
That good news has lifted our spirits, however, as we see the potential for discharge edging nearer!
Day 37
 |
| David and Becky Dearborn visit on Monday, all garbed up! |
 |
| Medranos and Johnny Ruck visit |
We've already walked once this morning, just John and I. We had to take along the IV pole because they are giving him a unit of blood.
Yesterday, we had some wonderful visits from friends. I had invited David and Becky Dearborn, mostly because I wanted to see my friends! They were both delighted to be able to visit with John.
After a short visit with him, we went to the waiting room and talked a while longer. I had to leave for a few minutes because Sandra Diaz dropped off some pinto beans and lentils because I have been craving some beans and legumes. In her package was also a bunch of Valentine's cards from our Rolla Church family and some granola from Lynn Rosette. Thanks, Sandra!
David and Becky wanted to go to lunch so we walked to the children's hospital cafeteria. It is a pretty location and does have good food.
Later last evening, Dom and Marilous and EG Medrano and Johnny Ruck showed up. After a pleasant visit, they left, and John was ready for sleep. When I got back to the Lodge, Pat had moved into my room. I had asked for a roommate if there was someone who needed a place. That keeps my expenses down. I was so very tired and ready for sleep by 9. Her son is 21 and in the hospital for possible Lymphoma so she did not make it back to the room till almost 11. I introduced myself and talked briefly and then of course could not go to sleep. John also had a bad night. He'd had a respiratory therapy treatment just before bed and he was kept awake with coughing. So we are both pretty wiped out today.
That good news has lifted our spirits, however, as we see the potential for discharge edging nearer!
Thursday, February 13
Day 32
Monk John! Since he was cold today, I put this Sleepy Sleeve by
youregettingwarmer.com
on John.
This was a gift sent by Linda Borton McCabe. It doesn't actually go over his head, but he loses so much heat out through his, that I just drapped it over!
We're in a new room, 7577, but with a lovely view, a smaller corner room. But we had some pretty difficult news from the infectious disease doctors telling us straight up that this graft infection is serious, and one that may be able to be suppressed but not eradicated. Hard to hear...lots of unpleasant implications.
The other development today is a further delay in departure for rehab; but it could be a good one, IF he is able to be discharged without dialysis. So, if we have to stay a few more days here, with the long term view of no further, dialysis, we can deal with that. In the meantime, we will wait and see...
Anatomy of a Day in Room 7237
7 am Night nurse gives 'bedside' report to Day Nurse; rather than being bedside, it is really by the computer screen, but it is right here and well within our hearing.
7:30 am John sitting up in bed with student nurse, Emily (our favorite!) taking vital signs; he is starved so I peel an orange for him which he says is delicious...waiting impatiently for breakfast
Emily wants to get him up in chair for meal but he prefers to stay in bed because he is comfortable. Nurse insists he needs to be in chair, but breakfast comes too quick so he eats sitting up in bed
8:30 Nurses get him to his chair but the standing and walking making him light-headed, dizzy, and weak; sits down, tries to take his pills with applesauce, but vomits and is too weak to continue
Janitor comes in to collect trash
9:00 Weakness continues; blood pressure has dropped but slowly comes back up
9:30 Still trying to get him to take his pills; they need to be taken within 30 minutes; instructor comes in to discuss John's weakness and encourages pills be taken
10 Student nurse Emily getting his bed ready and prepared for bed bath
Position in chair changed to lessen pain on tailbone
Trying to take his pills again
Dietitian comes in to discuss Mechanical/Soft/Vegetarian diet and his need for Ensure/Calories
Catering Associate comes in take lunch and dinner order from me for John
Bed Bath while John still feels weak and out of sorts
11 I walked down to the Gift Shop and bought us some Chocolate Covered Strawberries for our Valentine's Day.
When I got back, Physical Therapy was here ready to take John for a walk. He walked through the waiting area and on to the windows that overlook Forest Park and the ice skating rink. Walking back, he never sat down even once, and surprised us all, especially after his orthostatic hypotension episode.
Emily is going to put some lydocaine on his tailbone and a new patch, too.
12 Dr. Maniar here: will appeal our insurance for Acute Rehab
Infection disease Dr. Vasquez: fearful that infection will return, IV antibiotics 6 weeks
Very lovely and sympathetic doctor; kind, concerned; not wanting to spoil our Valentine's Day!
1 Occupational Therapist
Standing, putting pants on, brushing teeth, balance assessment
Back to bed for some more bed rest
2 Nurse Becky comes to change his chest dressing
Cleaning lady comes in to clean up the room
Talk to Social Worker, trying to understand. She said, "There are barriers..."
Terry, a lady who deals with the whole dialysis question will come talk to me
John napping in bed and comfortable...so thankful there is not much pain
3 News that we are being moved to another unit, same floor, Room 7577
Very difficult two hours with pain from suppository and prune juice; more agony for John
4 Infectious Disease team came in and verified what Dr. Vasquez had said; graft infection is very serious, no chance of eradication just hopeful they can keep it suppressed...hard to hear
5 All packed up ready to move; Terry, a renal nurse suggest that John's kidneys may be recovering enough to go to Rehab without dialysis. Staying here a few more days might get us to that place and that would be a blessing...just like we have been praying for!
6 In our new room with two windows, corner room, smaller, but beautiful view just like from dialysis...John resting, no appetite...
Nurse comes in to reattach monitor wires
7
Well...that's as far as I got....just to give you an idea of what goes on in our room! And, I failed to post this earlier....
Day 32
Monk John! Since he was cold today, I put this Sleepy Sleeve byyouregettingwarmer.com
on John.
This was a gift sent by Linda Borton McCabe. It doesn't actually go over his head, but he loses so much heat out through his, that I just drapped it over!
We're in a new room, 7577, but with a lovely view, a smaller corner room. But we had some pretty difficult news from the infectious disease doctors telling us straight up that this graft infection is serious, and one that may be able to be suppressed but not eradicated. Hard to hear...lots of unpleasant implications.
The other development today is a further delay in departure for rehab; but it could be a good one, IF he is able to be discharged without dialysis. So, if we have to stay a few more days here, with the long term view of no further, dialysis, we can deal with that. In the meantime, we will wait and see...
Anatomy of a Day in Room 7237
7 am Night nurse gives 'bedside' report to Day Nurse; rather than being bedside, it is really by the computer screen, but it is right here and well within our hearing.
7:30 am John sitting up in bed with student nurse, Emily (our favorite!) taking vital signs; he is starved so I peel an orange for him which he says is delicious...waiting impatiently for breakfast
Emily wants to get him up in chair for meal but he prefers to stay in bed because he is comfortable. Nurse insists he needs to be in chair, but breakfast comes too quick so he eats sitting up in bed
8:30 Nurses get him to his chair but the standing and walking making him light-headed, dizzy, and weak; sits down, tries to take his pills with applesauce, but vomits and is too weak to continue
Janitor comes in to collect trash
9:00 Weakness continues; blood pressure has dropped but slowly comes back up
9:30 Still trying to get him to take his pills; they need to be taken within 30 minutes; instructor comes in to discuss John's weakness and encourages pills be taken
10 Student nurse Emily getting his bed ready and prepared for bed bath
Position in chair changed to lessen pain on tailbone
Trying to take his pills again
Dietitian comes in to discuss Mechanical/Soft/Vegetarian diet and his need for Ensure/Calories
Catering Associate comes in take lunch and dinner order from me for John
Bed Bath while John still feels weak and out of sorts
11 I walked down to the Gift Shop and bought us some Chocolate Covered Strawberries for our Valentine's Day.
When I got back, Physical Therapy was here ready to take John for a walk. He walked through the waiting area and on to the windows that overlook Forest Park and the ice skating rink. Walking back, he never sat down even once, and surprised us all, especially after his orthostatic hypotension episode.
Emily is going to put some lydocaine on his tailbone and a new patch, too.
12 Dr. Maniar here: will appeal our insurance for Acute Rehab
Infection disease Dr. Vasquez: fearful that infection will return, IV antibiotics 6 weeks
Very lovely and sympathetic doctor; kind, concerned; not wanting to spoil our Valentine's Day!
1 Occupational Therapist
Standing, putting pants on, brushing teeth, balance assessment
Back to bed for some more bed rest
2 Nurse Becky comes to change his chest dressing
Cleaning lady comes in to clean up the room
Talk to Social Worker, trying to understand. She said, "There are barriers..."
Terry, a lady who deals with the whole dialysis question will come talk to me
John napping in bed and comfortable...so thankful there is not much pain
3 News that we are being moved to another unit, same floor, Room 7577
Very difficult two hours with pain from suppository and prune juice; more agony for John
4 Infectious Disease team came in and verified what Dr. Vasquez had said; graft infection is very serious, no chance of eradication just hopeful they can keep it suppressed...hard to hear
5 All packed up ready to move; Terry, a renal nurse suggest that John's kidneys may be recovering enough to go to Rehab without dialysis. Staying here a few more days might get us to that place and that would be a blessing...just like we have been praying for!
6 In our new room with two windows, corner room, smaller, but beautiful view just like from dialysis...John resting, no appetite...
Nurse comes in to reattach monitor wires
7
Well...that's as far as I got....just to give you an idea of what goes on in our room! And, I failed to post this earlier....
Monday, February 18, posted on Tuesday...
Day 36
The Good That's Come of It!
Here are some wonderful stories of good that has already come out of what the devil meant for harm. David Dearborn's nieces were driving through Nashville when he called them on the phone to tell them about John. They go to school with Karissa so he wanted them to know. They pulled over to the side of the road just to pray for him. That is so precious!
Eva and Larry Hale are often awoken by the Holy Spirit to pray for John during the night and they never feel tired in the morning. They remember when John interceded earnestly for Larry when he was in open heart surgery so they are happy to return the favor for John. Praise God!
Kim Shull got to talk to her son, Tom, who was friends with us all in Lebanon, Oregon. When she told him about John, he later admitted to her that he felt compelled to bow on his knees in prayer for John, something he hadn't done in months.
One of our ICU nurses, Krista, was very touched when John and I prayed for her and with tears, thanked us. I explained that we understand her tears! When in ministry, it is especially significant when someone prays for US!
Our small and struggling Waynesville Church has been able to pull together and feel stronger. They love us and have appreciated our almost weekly attendance. But without our presence, they have taken on more responsibility and have felt strengthened to pull together and to continue their prayer vigil for us and for their church. God has sent Jerry and Judy Johnson, a retired pastor and his wife, to provide some guidance and leadership for them.
Romans 8:28....We know that all things work together for good to them who love the Lord and are called according to his purpose.
Here's the last edition of my retreat report. Angie Joseph and I are pictured here on the lookout down from the camp. We saw an eagle flying over the water as well as a group of deer run away as we approached.
I've already reported on our supper and the pictures are included below.
Sunday breakfast was delightful as well. It lasted me until 5 pm!
Several of us women had stood at the windows overlooking the lake. We had watched some bluebirds flitting around. A birdhouse seemed to be the center of their activity and before long, we noticed some kind of rivalry going on. In the green birdhouse, we could see what looked like a sparrow. When she came out, or flew back in, one of the bluebirds would dive bomb her.
We observed, speculating on what it could mean. Did the bluebirds want the bird house? Had the sparrow taken it over? Was she a visiting friend or was there some kind of adultery going on? We laughed as we talked about the possibilities.
Look closely in the last picture below and you will see my beautiful bluebird friend among the branches.
To me it seemed like so many church members, being pesky and finding fault, wanting to bring discontent and sorrow to another who was not acting in quite the manner they thought appropriate.
The morning ended with a wonderful appeal from Bev that we care for our physical bodies. With many hugs and farewells we hit the road home. I was back to the hospital with John by 2 pm and found him strengthening nicely.
Day 36
The Good That's Come of It!
Here are some wonderful stories of good that has already come out of what the devil meant for harm. David Dearborn's nieces were driving through Nashville when he called them on the phone to tell them about John. They go to school with Karissa so he wanted them to know. They pulled over to the side of the road just to pray for him. That is so precious!
Eva and Larry Hale are often awoken by the Holy Spirit to pray for John during the night and they never feel tired in the morning. They remember when John interceded earnestly for Larry when he was in open heart surgery so they are happy to return the favor for John. Praise God!
Kim Shull got to talk to her son, Tom, who was friends with us all in Lebanon, Oregon. When she told him about John, he later admitted to her that he felt compelled to bow on his knees in prayer for John, something he hadn't done in months.
One of our ICU nurses, Krista, was very touched when John and I prayed for her and with tears, thanked us. I explained that we understand her tears! When in ministry, it is especially significant when someone prays for US!
Our small and struggling Waynesville Church has been able to pull together and feel stronger. They love us and have appreciated our almost weekly attendance. But without our presence, they have taken on more responsibility and have felt strengthened to pull together and to continue their prayer vigil for us and for their church. God has sent Jerry and Judy Johnson, a retired pastor and his wife, to provide some guidance and leadership for them.
Romans 8:28....We know that all things work together for good to them who love the Lord and are called according to his purpose.
I've already reported on our supper and the pictures are included below.
Sunday breakfast was delightful as well. It lasted me until 5 pm!
Several of us women had stood at the windows overlooking the lake. We had watched some bluebirds flitting around. A birdhouse seemed to be the center of their activity and before long, we noticed some kind of rivalry going on. In the green birdhouse, we could see what looked like a sparrow. When she came out, or flew back in, one of the bluebirds would dive bomb her.
We observed, speculating on what it could mean. Did the bluebirds want the bird house? Had the sparrow taken it over? Was she a visiting friend or was there some kind of adultery going on? We laughed as we talked about the possibilities.Look closely in the last picture below and you will see my beautiful bluebird friend among the branches.
To me it seemed like so many church members, being pesky and finding fault, wanting to bring discontent and sorrow to another who was not acting in quite the manner they thought appropriate.
The morning ended with a wonderful appeal from Bev that we care for our physical bodies. With many hugs and farewells we hit the road home. I was back to the hospital with John by 2 pm and found him strengthening nicely. Sunday, February 17, 2013
Sunday, February 17
4:30 pm
It's 3:30 and I have been back in Room 7577 with John. When I got here, I watched him get up and walk to the chair, mostly unassisted. That's great progress! He has already walked three times today, using the hand rail in the hall, with a Physical Therapist or a nurse beside him but not holding him. He wants to walk again with me. That's exciting!
Yesterday, I enjoyed a full day with the other pastor's wives and thoroughly enjoyed myself. Bev and I had gone to bed around 9 and I awoke again at 4 am and could not go back to sleep. Breakfast was just luscious! More fresh fruit, crepes, granola, hot cereal, and stripples. We all marvelled at its beauty, which not only nourishes the body, but the soul, too!
Angie Joseph had a presentation about Friends all based on the Bible. It was so practical. Her six points were, Friends: 1) Listen, 2) Share your lot in life, 3) Have your back, 4) Speak the truth in love, 5) Help everyone, and 6) Challenge each other. As pastor's wives we need to be friends with people without expecting them to be our friends, because that is how Christ was. What a challenge!
Rhonda spoke next and did a wonderful job sharing stories from her life of how her family extends friendship, accepting of people so that people come to know God. Her three points were 1) Be friendly, 2) Be supportive, and 3) Be Loving. She's an excellent speaker and we so enjoyed her words of wisdom.
Lunch was delicious with special individual salads, curry and rice, special side dishes, and coconut cream pie. Linda Kennedy, our cook, always took special pains to make everything so pretty.
Below you see the buffet, so tastefully spread out and all steaming hot! What we love about Linda's food is that it is delicious and has a plant slant. So much of healthy food is not tasty nor appetizing. This is all of that and so much more.
In the afternoon, we had time off. Angie, Peggy, and I went for a good long walk, first down to the lake and up heartbreak hill, then along the trail and back to our rooms. Bev and I had a wonderful, meaningful, long talk and then took a good rest.
Supper was also delicious. But here's the problem. I had a lovely large breakfast today and it is almost five and I have not had nothing since....so talking about all this great food has me salivating! In fact, I have leftovers from supper last night to eat now and I am ready. It was lettuce wraps filled with deliciously seasoned tofu and then peanut sauce over the top, a very special and delicious humus was served made with green chilis, a large platter of grilled vegetables and one of fresh vegetables, as well, plus crackers, chips and several yummy desserts.
After that delectable supper, we waddled into the fellowship hall for laughter and games. It enabled us all to get better acquainted with each other and to continue the camaraderie and fellowship. I've included a few pictures of the friends who attended.
A bit more about my retreat will be shared in the next post. John walked with me for the first time. I am able to offer just a bit of assistance as he gets out of the chair. I held his hand as he walked, holding lightly on to the side rail with his other hand. It wasn't a real long walk but the others today were longer. So the progress I have seen since I was gone is really amazing! So glad....they are taking a 24 hour urine sample to check his Creatinine. That will help determine his dialysis status. We are so hoping to go to rehab without it!
More later!
4:30 pm
It's 3:30 and I have been back in Room 7577 with John. When I got here, I watched him get up and walk to the chair, mostly unassisted. That's great progress! He has already walked three times today, using the hand rail in the hall, with a Physical Therapist or a nurse beside him but not holding him. He wants to walk again with me. That's exciting!
Angie Joseph had a presentation about Friends all based on the Bible. It was so practical. Her six points were, Friends: 1) Listen, 2) Share your lot in life, 3) Have your back, 4) Speak the truth in love, 5) Help everyone, and 6) Challenge each other. As pastor's wives we need to be friends with people without expecting them to be our friends, because that is how Christ was. What a challenge!
Rhonda spoke next and did a wonderful job sharing stories from her life of how her family extends friendship, accepting of people so that people come to know God. Her three points were 1) Be friendly, 2) Be supportive, and 3) Be Loving. She's an excellent speaker and we so enjoyed her words of wisdom.
Below you see the buffet, so tastefully spread out and all steaming hot! What we love about Linda's food is that it is delicious and has a plant slant. So much of healthy food is not tasty nor appetizing. This is all of that and so much more.
In the afternoon, we had time off. Angie, Peggy, and I went for a good long walk, first down to the lake and up heartbreak hill, then along the trail and back to our rooms. Bev and I had a wonderful, meaningful, long talk and then took a good rest.
Supper was also delicious. But here's the problem. I had a lovely large breakfast today and it is almost five and I have not had nothing since....so talking about all this great food has me salivating! In fact, I have leftovers from supper last night to eat now and I am ready. It was lettuce wraps filled with deliciously seasoned tofu and then peanut sauce over the top, a very special and delicious humus was served made with green chilis, a large platter of grilled vegetables and one of fresh vegetables, as well, plus crackers, chips and several yummy desserts. A bit more about my retreat will be shared in the next post. John walked with me for the first time. I am able to offer just a bit of assistance as he gets out of the chair. I held his hand as he walked, holding lightly on to the side rail with his other hand. It wasn't a real long walk but the others today were longer. So the progress I have seen since I was gone is really amazing! So glad....they are taking a 24 hour urine sample to check his Creatinine. That will help determine his dialysis status. We are so hoping to go to rehab without it!
More later!
Saturday, February 16, 2013
Sabbath, February 16, 7:22 am (Day 34)
The sun is barely touching the tops of the trees as I
overlook Lake of the Ozarks from the Lakeview Lodge at Camp Heritage. And is it cold! With no leaves on the trees, I can see what is
normally hidden by the luxurious leaves on the maples, oaks, sycamores, and
even some birch and elm….the CONTOUR of the land. The hills slope down precipitously to the
water’s edge. Across the ravine I watch
as the sun creeps ever lower. Soon it will
shine here and hopefully warm us and my feet!
Yesterday, I left John in the good care of the nurses at
Barnes Jewish. He will miss his own
private duty nurse, however and will appreciate my return….I came home to
Rolla, unpacked, repacked, grabbed some lunch, petted Rosy a bit and pretty
much dashed out the door before an hour had elapsed. Because I miss the hugs and the love of the
children at Stepping Stones, I got there early and had some time to hug both
them and the staff, who greeted me warmly.
Bev and I left about 3, traveling the beautiful ridge road
that is Highway 7 off Route 44 and all the way to Camp Heritage here on the Lake. There are about 15 women here to enjoy
fellowship. There are few who understand
me as well as others who are married to pastors.
Taking a brisk walk together on the trail, Bev and I scurried
and hurried to keep warm. The sun was
nearly gone and our clothes were not adequate.
Yet the fresh air and exercise were invigorating and pleasant. Supper was delightful: an avocado salad in the skin, with radishes
and oranges and lime juice, crusty herb bread, and celery soup and minestrone soup,
all beautifully served and deliciously satisfying. Bev and I led out in the music and she
presented her topic all about relationship, not even knowing that our topic was
“Friends”.
Straight to bed and sleep for us and as usual I was awake
near 4 with too many fearful thoughts that could not be quelled. Sometimes I can distract my mind and other
times it just goes. At 5:30 I got up and
dressed and came here to the Lodge for hot mint tea, time in the prayer room,
and focusing on the friendship quotes that add to the décor.
This one I found on Facebook recently: “Friends are like the walls of a house. Sometimes they hold you up. Sometimes you lean on them. But sometimes, it’s enough to know they are
just standing by.” Here’s a new
one: “We need old friends to help us
grow old and new friends to helps us stay young.” And this one makes me cry: “Friends are needed both for joy and for
sorrow.” I’ve had way too much sorrow
lately; there is much to grieve and I think we are grieving what we have lost. Many are praying for full recovery and we can
hope for that. Only God knows our path
for the future. As long as I live in the
moment and do not think too much about what lies ahead, I can cope.
“No one is useless in this world who lightens the burden of
it for anyone else.” This one makes me
cry, too, because so many of my friends have worked hard to lighten my burdens
this past month.
Now the sun has crept up the lawn in front and is beginning
to pour into our chapel windows….lovely!
Peggy Wagley just came by and told me she had seen pictures
on fb of our family. She marveled at
John’s “hair” from years ago. When I met
him, he was already bold, but combed his hair OVER his head. In fact, my favorite wedding picture is us by
a birch tree by a pond. He doesn’t like it though because the wind had blown
his "combed over strands" off his head…..ugh!
Anyway, I had to explain to Peggy that his hair was a hair
piece which he wore for a while….could tell you the whole story of the first
day he went to work without it (maybe someday!).
She shared that one of her songs shaves his head. So I had to share my two favorite hair
quotes:
“You don’t put marble tops of cheap furniture.”
“God made some heads perfect; the others he put hair on.”
Now the sun is fully on the lake and the reflections are
beautiful. I always love flying over
Lake of the Ozarks. It is unmistakable
with the little white dots EVERYWHERE…the boat docks!
Eat your heart's out....check our breakfast! Fruit, granola, scrambled tofu and crepes....it's about time.
Talk to you later....
Wednesday, February 13, 2013
Wednesday, February 13
Day 31
On the elevator just now, I heard two hospital workers say, "Time sure flies! And, eaves-dropper that I am, I said, " Except when you are in the hospital, when 4 weeks feels like four months! Cause that is the way it has felt to us....time just drags along. And yet, it is hard to believe that we are already on day 31. Thankfully, the gradual trend is upward and we are grateful!
We are once again in dialysis. Because breakfast never comes till nearly 8:30, I fed John an orange, an apple, and a banana, which we said were just delectable. Then for breakfast John ate oatmeal, canned pears, applesauce, and raisin bran, with his almond milk on it. He was so hungry, he ate another bowl of raisin bran. I've ordered his lunch and so hoping he can eat well again.
I have a BIG plan for me for today....I'm going to walk to the Subway Shop and get me a sandwich. It is just north of here, maybe a block past the Siteman Cancer Center, right next to my favorite Hon's Wok! It just sounds good and the outdoor exercise will be welcome.
My footlong veggie delight was a treat, along with chips, and Sierra Mist from John's tray. John could not eat well since he always feels lethargic after dialysis.
Just now he said to me, "I forgot to pay our January 15 Quarterly Taxes." So I handed him the checkbook so he could tell me how much. He found the amounts from last quarter. Now he will have to tell me where to find all the stuff I need to send them off. Several weeks ago, I gathered all the bills, figured out which were automatic withdrawal, paid those that weren't, and I also took care of the credit card payments. That was a big load off my mind.
Pam is our nurse today. She said that if she were to have her picture on my blog then she would have to see it first. So I will show her one of my posts with pictures....! She liked it...so here are several with her in it!
Here's John sitting up in his chair, draped with lots of blankets to keep warm. He has his glasses on in order to see the amounts that we need to send in for quarterly taxes.
You can see not one but two plants from Salem Church....hmmmm....that must be a duplication. Shall I return one?
Pam was very gentle as she removed the wound vac from his chest wound. It is closing up nicely. Dr. Maniar wants to see it and decide the next step.
The staples in the abdominal incision will be taken out soon. The drain from that area is still in place but is putting out less and less.
John still cannot get out of a chair alone. He is finally able to minimally change his position. When Physical Therapy walks him, they assist him the whole way. Though it is slow, he is getting stronger.
He walked all the way to the waiting room, rested a while, then all the way back...woohoo!
No more wound vac....that's good. The wound will be cleansed and dressed daily but no more tubes!
 |
| Natasha with her Dad in ICU |
On the elevator just now, I heard two hospital workers say, "Time sure flies! And, eaves-dropper that I am, I said, " Except when you are in the hospital, when 4 weeks feels like four months! Cause that is the way it has felt to us....time just drags along. And yet, it is hard to believe that we are already on day 31. Thankfully, the gradual trend is upward and we are grateful!
We are once again in dialysis. Because breakfast never comes till nearly 8:30, I fed John an orange, an apple, and a banana, which we said were just delectable. Then for breakfast John ate oatmeal, canned pears, applesauce, and raisin bran, with his almond milk on it. He was so hungry, he ate another bowl of raisin bran. I've ordered his lunch and so hoping he can eat well again.
I have a BIG plan for me for today....I'm going to walk to the Subway Shop and get me a sandwich. It is just north of here, maybe a block past the Siteman Cancer Center, right next to my favorite Hon's Wok! It just sounds good and the outdoor exercise will be welcome.
My footlong veggie delight was a treat, along with chips, and Sierra Mist from John's tray. John could not eat well since he always feels lethargic after dialysis.
Just now he said to me, "I forgot to pay our January 15 Quarterly Taxes." So I handed him the checkbook so he could tell me how much. He found the amounts from last quarter. Now he will have to tell me where to find all the stuff I need to send them off. Several weeks ago, I gathered all the bills, figured out which were automatic withdrawal, paid those that weren't, and I also took care of the credit card payments. That was a big load off my mind.
Pam is our nurse today. She said that if she were to have her picture on my blog then she would have to see it first. So I will show her one of my posts with pictures....! She liked it...so here are several with her in it!
You can see not one but two plants from Salem Church....hmmmm....that must be a duplication. Shall I return one?
Pam was very gentle as she removed the wound vac from his chest wound. It is closing up nicely. Dr. Maniar wants to see it and decide the next step.
John still cannot get out of a chair alone. He is finally able to minimally change his position. When Physical Therapy walks him, they assist him the whole way. Though it is slow, he is getting stronger.
He walked all the way to the waiting room, rested a while, then all the way back...woohoo!
No more wound vac....that's good. The wound will be cleansed and dressed daily but no more tubes!
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