June 28 Long, useful day

The day did not start well.  Optimistically I slept in the master bedroom only to be awakened at 2:30 and 4:30.  At 4:30 there was awful diarrhea and I got up to prepare the Imodium solution and put it into David's feeding tube.  He changed into fresh clothes and went to the family room to watch TV.  He has trouble with his hearing aids and the blue tooth and I told him that he had to go into the bedroom and watch TV but he didn't want to do that.  I finally figured out what he was doing wrong, fixed it and went into the guest room to sleep.  At 6 he knocked on the door for more Imodium.  I gave it to him and fell back into bed.  Anothe knock at 7 for more Imodium.  By then I just got up.  I went to the drug store to see if there was a stronger anti-diarrhea med.  Neither local one opened until 8 so I waited.  There is no stronger med; it's this or the generic, all the same strength.  I got more because we were running low.  The home health nurse came at 9.  She gave us a sample jar for a stool sample.  We had fun getting that!  Later the physical therapist came.  Amy left their company to move to PA to be near her mother (VA is not a bad place to move to be near your parents - hint) so her supervisor, Rachel, worked with David and was astonished to see his strength after 7 days in bed.  He lost almost no ground with this hospitalization and did the full round of exercises with her.  He has balance issues that she is going to work on.  She will also work on getting him to walk down our driveway to get mail and to take the trash cans to the curb.  She asked him if he is driving.  I was not happy with that particular question because it seemed to indicate that he is OK to drive.  He does not think that so I am relieved.
I took his car to the drug store because it has not moved since he entered the hospital on May 18.  I noticed that the state inspection is due this month and took it to the dealer for the inspection.  They give us free inspections because he bought the Corolla there.  The wait was estimated to be 2.5 hours so I got a ride home with Fred Wright who was visiting David BUT there was a miscommunication and Fred left to get me while David navigated out the door onto the porch and locked himself out!!!  He sat on the porch steps until we got home.  Than took me to collect the car later.
I watered all the plants on the two porches the deck and the patio, so of course it is finally raining.  I'm heading to bed early because I teach tomorrow between 9 and 2 and I am exhausted.  Laundry and unloading the dishwasher has to wait, along with myriad other stuff.  I'm keeping the essential things under control.  David is doing his best to get strong and stay informed.

June 27 Home

David was discharged today and we arrived home about 5:30 after the obligatory stop at Costco.  His lungs are unchanged so no worse.  His lung sounds better and blood work indicates that fluid retention is reduced.  The LaSIX has been doubled over last week to keep fluids off.  David came into the house, sat on the couch on his newest cushion, asked for a urinal just in case, turned on MSNBC and fell assleep.  I still have a lot of unpacking to do and put some mac&cheese from Costco into the oven that I will enjoy with four bean salad and tomatoes.  Now I'm just waiting for Home and Heart home medical care to call with their appointment times to reassess David and plan for his home recovery.  I got discharge information about the stages of heart failure, what to watch for and what to do if and when these things happen.  I think that David is relieved to be out of there and be home.  Me too.  Dr. Bernstein popped in right before we left, asked a bunch of questions, listened to David's lungs and noted that he was not any worse from when he was admitted, so all the antibiotics did no damage.  I prefer to think that they hoped for the best but treated for the worst.  If he had MRSA or C.dif, then his life would have been saved by their actions.  My only criticism was that samples were not cultured prior to starting the antibiotics.  I will remember that for the future.
Now we just concentrate on incremental strength building.  The Home and Heart health nurse and physical therapists called within the hour and have scheduled visits tomorrow morning.  The staff from that service is amazing.

June 26 update

Today the Clostridium difficille culture came back negative so it was possible to start Imodium today to stop the diarrhea.  The doctor said that his lungs sound better.  David will have an X-ray tomorrow to verify that the opacity is reduced and that the fluid reduction is working to compensate for the heart failure.  A repeat echocardiogram will not be useful right now.  Many of the drugs have been changed or discontinued, so another trip to Costco pharmacy may be necessary on the way home.

David is weak but is able to get to and form the bathroom without assistance or a cane.  I hope that he comes home tomorrow so that he can have a home nursing and home physical therapy evaluation on Tuesday when I am home all day.  If discharge is delayed until Tuesday then I may need to cancel Wednesday's class.  My students will be devastated.

I am confident that the heart failure is the source of all the recent medical issues, now that so many other things have been ruled out.  Hopefully this means it is all downhill from here on.

New information June 24 late

Dr. Bernstein is probably going to discontinue the Zosyn due to the negative cultures and unchanged X-ray as well as the really horrible diarrhea he is having.  His opinion on the x-ray is that the opacity is due to fluid in the lungs caused by heart failure. He told Dr. Kear to get the fluid under control.  I asked for a cardiology consult with Dr. Henry Clemo and he agreed and said he'd ask for it.  He said that the ejection fraction on the last echocardiogram was less than 25%.  That was a bit of a shock.  So, David will be the guest of Mary Washington hospital over the weekend trying to reduce the fluid load, get rid of diarrhea and get some strength back.  He is extremely bored and so I am going to take the MacBook and a lot of videos over this weekend.  We can also get movies from Apple TV, Amazon Plus and Netflix streaming.  He is reading the latest Kay Skarpetta novel and I just got him one written by Joe Hill, Fireman that is on the best seller list, so he has some interesting books.  I'm hoping that he can go for a walk and do a few exercises once the diarrhea is resolved.  I am optimistic that the cardiologist can give David a treatment plan to get him home and functioning again.  I miss him.

Negative cultures and no change in the X-ray

So the title says a lot.  The cultures were negative for fast growing bacteria and this morning's X-ray shows no change in opacity so the pneumonia has not improved.  The hospitalist still thinks that David should continue with the Zosyn.  I think that Vancomycin has been discontinued.  David has terrible diarrhea and that got cultured this morning for Clostridium difficile.  I am concerned about the antibiotic wiping out his friendly bacteria and the possibility of a secondary fungal infection as well as the diarrhea.  The diarrhea is so bad that it prevents him from moving, walking and exercising in addition to making him weak of its own accord.  I feel so sorry for him.  He's convinced that the diarrhea will go away if he goes back onto the blood thinners...don't know why.  I think that it is well established that Lomotil will stop the diarrhea and that it should be prescribed.
I asked the hospitalist how we would know if the antibiotics work if there is no bacterial culture that will show it, that his white count is normal.  The pneumonia has not budged and when do they expect that to change if the antibiotics are effective.  I also asked if they cultured for slower growing mycobacterium and fungi.  He didn't think so.  He pretty much said standard of care is to treat before the cultures are finished.  That is the difference between medicical science and objective science.  In a scientific setting I would be heavily criticized for taking that approach.  I am having a hard time understanding why antibiotics are still appropriate.  Dr. Kear said that I would be really unhappy if I told them to stop the antibiotics and then David got sicker.  This is true.
I went back to the reason for admission:  Low oxygen levels.  That resolved right away when IV LaSIX was initiated BUT they started antibiotics at the same time and are reluctant to stop either now.  David is weak, confused about what is happening to him and just wants to get better.  He is not clammoring to come home.
I think the plan is for him to come home tomorrow with IV antibiotics.  Medicare and supplemental will not cover the home IV antibiotics.  I'm still not sure how long they will be necessary.  If that is the treatment plan we all agree is the best, then we'll do it.  Being home is worth the cost of it.  I am waiting for the infectious disease guy, Dr. Bernstein, to call me to discuss it.  David will need to have interventional radiology install a port for the IV before he leaves the hospital.  I'm unsure about who will administer the IV drugs.  I can probably do it if they will allow it.  At 32.10 a day it is quite affordable if the duration is short.  With these side effects I'm not sure that David can tolerate an extended duration.
Please keep us in your prayers.

Wednesday is shower day

After teaching I headed to the hospital.  Dr. Bernstein and I spoke last night about 11 and he wanted to use different antibiotics.  He thought that David could have caught a bad bacteria in his throat mucus that then went to his lung and pneumonia.  He wanted to stay with Vancomycin but change the other two to Zosyn (a mixture of two antibiotics, piperacillin and tazobactan) IF the pharmacy would let him.  The drug is in short supply.  The awesome Richard Mainzer let me know that this is due to a plant closure in Italy causing a raw material shortage.  Happily the pharmacy filled the prescription and David got it today along with vancomycin.  The hospitalist spoke with us this afternoon and said that the course of the drugs would be 48 hours.  The social worker came in shortly thereafter to inquire about home health services and our preferred provider because David is probably going home at the end of the week.  I sure hope so because as I mentioned before nothing happens in the hospital on weekends.  I convinced the doctor that David is not a fall risk and the physical therapist finally got her report in confirming that.  So that led to a shower for him but without his usual hair care products so no conditioner, no mousse and no blow dryer.  He is still using the urinal because they are obsessed with measuring it.  When I come tomorrow I will bring clothes for him to go home.  Even if he has to stay until Friday it will represent hope.

Mary Washington Hospital once more

We are in the ER at the hospital waiting for David to go for a CT scan before going upstairs. Earlier today the physical therapist arrived to find David trembling with blue hands and nail beds and blue lips.  His oxygen level varied between 69% and 100%.  I called the doctor and was told that my first call should have been to 911.  I hung up and did that.  They came in under 5 minutes.  In the ER blood work was done and a chest X-ray too.  The ER Doctor said David had to stay and transferred him to the hospitalist, Dr. Torres (the male, straight version who is not on Gray's Anatomy).  He is concerned about the pneumonia on the chest X-ray causing the breathing issue and it being hospital acquired and is treating is aggressively with three, IV antibiotics:  Vancomycin, Ceftrisxolon and Azithromycin as well as aggressive breathing treatments to knock it out.  He will also have a CT scan to rule out a lung clot.  He will do this while a guest of MW hospital.  Sigh.  He is NOT happy about being here.  He has his cell phone and hearing aids with the Bluetooth connected to it but is not really into conversations.  Than brought a book he is reading, extra batteries for his hearing aids and his Kindle.  I am working on a list of stuff to bring tomorrow.  Than is here to help and our neighbors are pouring out with offers to do things.  There is really nothing anyone can do other than pray or come to see him if you are local.  The hospital rooms are small, cramped and uncomfortable.  Visitors are welcome in small groups for an hour or so at a time.  I haven't seen his room yet to see how many chairs are there.  The last time the room was a nice size with three chairs.  The first time it was not and there was a single chair. He looks great and feels good while in bed with oxygen.  The goal will be to have him look and feel great with normal activities and on room air.
There is a wonderful deli down the block where I can get any food I don't have from home and I can go there when others are visiting.  Teaching my class is an escape for me and I love my students and colleagues.  If you can think of something I am missing let me know.

This morning I woke up to the sound of David on the phone with Amazon talking about a problem with his Kindle Fire.  His voice was clear and articulate and he never once said, "Say again I didn't understand you."  So he is both hearing using the Bluetooth on his mobile phone and speaking without a lot of mucus and constriction.  Wow.  That is amazing, wonderful and made me very happy.  The issue about the Fire was not resolved and he terminated the call after almost one hour of increasingly loud conversation.  Those phone "help" folks are anything but.  He will call back this afternoon when he has more time.  History says that he will finally ask to speak with a supervisor and that person will quickly handle the issue and solve it.
 He was also dressed for the day, shaved and his hair was brushed.  What a surprise.  I am still going to do the driving today.  We are headed to the temple for 10:00 services and he can stay for Torah study if he likes.  Tomorrow he wants to go to Prince William Forrest to meet Fred and Allie, maybe try to walk a little with the walking stick and then go to the Dumfree's cafe for political conversation, so I will drive him there.  I think that driving is his next challenge and I will ask the Amy, the physical therapist, about it next week when she visits.
Yesterday the nurse was very pleased with is physical condition, no fluid in the lungs, BP and heart rate are great, not much swelling but still requires the dreaded compression stockings.  He gets a home nurse twice a week.  His weight seems to be creeping again but I will wait until Monday to see if the creep recedes or continues before calling Dr. Clemo, reporting it and then going back to 20 mg of LaSIX a day.
So we are poised for a nice weekend.  The weather is gorgeous and I hope to get out into Schrassic Park for some digging in the dirt.  Yesterday I had my first grape tomatoes ripen and ate 8 of them right off the vine - delicious.  The French Tarragon looks healthy and I want to use it in a potato dish tomorrow.  I think that there is enough basil for a good batch of pesto too.  And several colors of lilies are in bloom, white, yellow, red and verigated pink.

No walker; no cane

As you can see David is walking without assistance, most of the time.  He carries a cane and uses it when he gets tired.  He visited his primary care doctor yesterday and she indicated that blood thinners will not be forthcoming anytime soon and ordered lots of blood work.  Today the blood work came back with stable values but they are still not in the normal range for hemoglobin that remains 9.5.  His kidneys are no worse for the LaSIX.  She is titration get the LaSIX down.  Instead of 10 mg twice a day it is 10 mg. on alternate days with 20 mg. twice a day.  We will closely monitor his weight and he will continue with the home nurse twice a week and the physical therapist three times a week.  His exercises take about an hour each day.  He is getting back to his fighting strength and interested in being independently mobile.  Me too.  He must see the GI guy for an endoscopy and we'll arrange that appointment tomorrow morning before I leave for school.  Even if he is independently mobile, I want to be there to help with hearing all the pearls of wisdom from Dr. Lee.

Sleeping continues to be an issue and he wakes up to urinate and sometimes cannot go back to sleep.  He can watch TV in our bedroom with the old headphones that I hooked up to the new TV with an adapter and cord to an optical, digital output.  I did not figure this out myself but used Costco concierge services and they detailed it for me.  I think that his low hemoglobin eases him into maps during the day and lessens his need for a full 8 hours a night.  I am still in the guest room and am thinking this may last longer that I originally hoped.  At least I can get my 7 hours!

Day by day

All is well.  Today the nurse said that David's lungs are clear, his legs are a bit swollen but not bad.  We got a digital scale to accurately track his weight day to day to monitor fluid retention.  David has a huge set of exercises at stations throughout the house, standing in the kitchen, sitting in the dining room and prone on the bed.  His legs are still a bit weak and these should both loosen them up and strengthen them. We took a little trip to a medical supply place yesterday and got him a new seat cushion for the couch. So far it is relieving the pain in his tush.  Today we went to Costco to get a prescription filled and he walked around there.  I can't seem to get ambitious to work outside or clean.  The repair guy came yesterday to fix the dryer but has to order parts and he cannot do it until the 21st.  He keep trying to talk us into a new unit, but it is a stacked, connected washer dryer and while the repair is expensive, a new unit would be almost 3 times more and probably would be even more with delivery and installation.  I look forward to NOT running up and down stairs when doing laundry and having David resume doing his.  Today I'm just going to relax, read, watch TV and then tomorrow get back into getting this house clean and deadheading plants etc. in the garden.  Than will help get the fountain going and the bench and tables out on Sunday.

Ron visited this morning and Fred called him about visiting us Sunday.  So Sunday morning he and Fred will be here to visit David about 8:15 or so.  It is Ron's final goodbye before he leaves to drive to his new home in San Antonio TX.  It is very sad to say goodbye to Ron.  He has been a wonderful neighbor and better friend.

A window into our world

Today the home health nurse visited and noticed fluid in David's lungs and legs along with some wheezing.  I noticed a 3 - 5 pound weight gain over yesterday.  Water retention!!  We decided to increase the diuretic to morning and lunch to keep fluid down.  David argued about the weight gain saying he was dressed today whereas in previous day's he was in his nightshirt.  Since we have an analog scale, reading it is problematic.  We just ordered a digital scale from Amazon.  That will provide less subjectivity in the weight.  David wanted to go to Costco and I nixed that idea.  I had too much to do here.

I caved out of exhaustion and exasperation and we bought a new TV for the bedroom.  My goal is to have him stay in there, in bed when he wakes up in the middle of the night rather than wake me.  When he gets up without waking me, I am anxious in my sleep and hear him with the walker and wake up anyway.  He fell in the bathroom Sunday night and I am nervous if he is up when I am not available to help him if he falls.  Between us we were able to remember the PT's instructions about how to get up from a fall.  Additionally, once he gets out into the family room to watch TV, he turns his hearing aids onto the Bluetooth to get the sound directly there but cannot hear if the sound is off on the TV speakers and that wakes me up too. He tells me that he pressed mute but I think he double presses it and turns it off immediately after muting it.  With a TV in the master bedroom and my door closed in the guest room I should be insulated from noise and relaxed enough to sleep.  Than took the old TV to the dump; it was so old that GoodWill would not take it.  I finally had the time and patience to set up the new one this morning after the nurse's visit.  Now David wants me to explain all the features to him.  I declined and told him to find a tutorial online.  It has Internet access to myriad services BUT you have to be subscribed and enter your password for each of them.  I did NOT have the time and patience to do that today.  I should have skipped the wireless installation.  The TV is connected to the FIOS box and has access to broadcast TV, the DVR with our saved programs and FIOS on demand.  I think that is enough.

I have to do both of our laundry....in the downstairs machines because the upstairs dryer is broken.  The repair person is coming Thursday but our laundry was piling up.  I need to water the flowers on both porches and the deck and sweep the deck.  I have to sweep and mop the kitchen and dust other stuff as well as write an exam for my Bio class and prep for tomorrow's class.  Bring on the iced coffee.  Meanwhile David is napping on the couch with his legs propped up on the coffee table.  He did all of his exercises and I think that wore him out.  He has to do the entire set twice a day. The nurse told him to wear the compression stockings and elevate his feet as much as possible.  I think that he will feel better when that fluid is lessened.  We are still finding the sweet spot between water retention and dehydration.

All's quiet

So far, so good.  While David woke up during the night, he had his electronics and the TV controls and I was across the house in the guest room, sleeping.  This arrangement will work until he is strong enough to get around alone.  The home health nurse is coming today, don't know about PT or OT.  I am heading out about 3 to go to DC to the Teaching Professor conference to do a presentation. Than will hang out with David while I'm gone. David had a shower this morning, his breakfast, all his meds and is sitting on the couch dozing with his Fire in his hands and Morning Joe on TV.

Heading home via Coscto pharmacy

We will soon be heading home.  Dr. Ahmad, the hospitalist, said that David can go home this afternoon.  First he must have lunch, his first Jevity in five days.  Then the social worker has to come by to restart the home health folks that were interrupted by this particular hospital stay.  He will be off of the blood thinner until the Gastroenterologist does another endoscopy in two weeks and verifies that the ulcer is healed.  He also must follow up with both Dr. Clemos.  But the important thing is that he can come home and be comfortable there without IV lines, with what seems to be constant blood draws and beeps from various devices.  I may be able to go outside and weed or downstairs and prepare for the Teaching Professor's conference tomorrow through Sunday.  He will be able to watch TV and catch up on his computer.  If he had the strength he would be doing the happy dance.