karenulijohn

It has been one week since Harvey was discharged from the hospital and he has been working very hard to make sure he continues to progress.  He has seen improvement in his appetite,and his ability to get around the house, with fewer visits to the lavatory.  The edema is subsiding slowly but surely; he lost four pounds overnight.  His hands are back to normal, but his legs and feet are still pretty swollen.  The skin is so tight and thin that it is easily abraded.  On several occasions I have seen blood running down his leg and spent at least ten minutes applying pressure to stop the bleeding.  The other hurdle that has arisen is pressure sores.  I discovered these just before we left the hospital.  Fortunately, we have had three very competent home nurses visit us over the week.  One is a wound specialist who spoke to the Doctor and advised a course of antibiotics for the pressure sores, presumably to preclude a recurrence of the sepsis.  Harvey is also scheduled to have home physical therapy, and while he is on the schedule, they haven’t got anyone assigned because of vacations.  I can tell that Harvey wants to get well because he is religiously performing the exercises they gave him in the hospital.

Harvey has gone from taking one baby aspirin to taking five different medications including antibiotic, iron, protonix, aspirin, and amiodarone for cardiac disrhythmia.  Of course, the responsibility for making sure he takes all of these on time and the correct dosage falls to me.  On the first day, I was worried sick that I might forget something and give him an overdose.  So, I created a spreadsheet detailing the drug, time, and dose, and I put a checkmark when he has taken it.  The nurse has also suggested that I take his blood pressure, pulse and weight each morning.  So, I have added those elements to my chart.  No one can say that I am NOT obsessive compulsive or anything!

Being homebound, Harvey appreciates visits from friends.  I, on the other hand, am finding being homebound a little confining.  When I finally realized why I was so grumpy, I headed for the mall and tried to spend some money.  I really enjoyed walking around, searching for something upon which to spend my money.  I looked at a MacBook Pro at the Apple Store, and a diamond bracelet at Ben Bridge.  I even contemplated getting a convection/toaster oven to replace my 25 year old model.  In the end, I bought a couple of pairs of shorts on sale.  I just don’t understand what is wrong with me.  Actually, I do.  It’s no fun buying stuff that I don’t need if I can’t have Harvey there to say “you really don’t need that!”

I forgot to explain why Harvey did not come home as planned on Saturday.  Dawn and Claire and I arrived at the hospital at 10:30AM expecting to take him home.  He was a little subdued and said he had to have a transfusion of two units of blood and then he could go home.  However, they had to cross match him again because the previous cross match had “expired.”  The blood would then have to be ordered and irradiated because he is a cancer patient.  This process would probably take several hours.  Each unit of blood is transfused over a period of three hours.  The nurses would then observe him for an hour or so looking for any negative reaction.  The PICC line could then be removed, but he would have to wait a half an hour holding pressure on the arm.  I started adding up all of this time and realized that we would not be leaving the hospital until around midnight.  I just said “NO!”  I couldn’t imagine us going through what we did today, at midnight or later on Saturday.  It would have been a terrible disaster.  Fortunately, Dawn and Claire backed me up, as did the nurse, Antoinette.  Harvey was outnumbered.  He was terribly disappointed, almost to the point of tears.  I might have relented except for Dawn playing “bad cop.”  Thank goodness she is willing to take on the big guy.  Fortunately, he now sees the wisdom of our decision and is most grateful.  It definitely worked out for the best.

We arrived home today at around 1:00 PM.  Before leaving the hospital, we were given all kinds of instructions and five prescriptions to be filled.  The PICC line was removed and Harvey was able to have a shower and dress in real clothes for the first time in nine days.  As we left the hospital, I stopped at Starbucks for a cup of tea and passion tea for Harvey, after which I gassed up the van.  One of the most important instructions was to make sure he has protein for each meal.  The RDA for protein is greater than or equal to 56g per day.  We hit the target today with a peanut butter and jelly sandwich, Ensure ice cream shake, two scrambled eggs and macaroni and cheese.  I got him settled and headed to CVS to pick up the prescriptions and was told by a very snippy young lady that they were not ready and that they had only just received them (which, by the way, was not true).  This was around 1:30 PM and he was due to have a dose of antibiotic at 2:00 PM.  I finally got the medications at 3:00 PM.  I’m not particularly happy with CVS.  I was grateful to our friends the Smiths and Mary Ann Barker for coming over to visit so that I was able to run these errands.  I am also grateful to the Coopers for lending us their walker.  The hospital decided that Harvey was quite steady walking and would not need a walker.  I was not so confident and decided to take up the Cooper’s offer.  I’m so glad that I did.  We might have been back at the emergency already had it not been for the walker.

In addition, the hospital forgot about was how difficult it is to rise from a low toilet when you haven’t been mobile for several weeks.  It became clear that we needed to solve this problem ASAP or we would both be injured.  We drove to Walgreens and I was able to find a raised toilet seat and safety rails.  I was pretty proud of myself until it became clear that I was going to have to install the rails.  Along with my nursing, electrical work, refrigerator moving, et al, I have now become an apprentice handy woman complete with channel lock pliers and battery operated screwdriver.  At least that has freed me from being a weight lifter.

Our next hurdle is getting in and out of bed.  Not only is our bed very high, but we don’t have safety rails attached, so there is nothing to hold onto.  The physical therapist did give us some tips on how to accomplish this, so we are going to practice a few times.  I have a feeling that this may be a fairly sleepless night for me.  Thankfully, a home nurse and home physical therapist have been assigned to Harvey.  They will be contacting us within 24-48 hours.  We won’t be going out much except for some short car trips to “blow the stink off,” as my father used to say.  Despite the hurdles, I’m glad to have him home and looking so well.  I just hope we can keep him moving in the right direction.

Barring any falls or mishaps, Harvey will be coming home tomorrow.  The hospital doctor, Dr. Berg sat down with us this afternoon and answered our questions and gave us the good news.  I wish I had thought to take a picture of Harvey’s face when she said those magical words.  It was like a light came on in his eyes.  I will attempt to give a complete rundown of everything I learned today.

Harvey was admitted to the hospital with a diagnosis of ulcerative colitis throughout the entire colon and cecum, along with sepsis caused by an infected diverticulum in the colon.  Treatment called for broad spectrum antibiotics and fluids, and potassium.  The atrial fibrillation was triggered by the general infection which was treated by drugs to restore normal sinus rhythm.  Due to the infusion of massive amounts of fluids and a very low Albumin count, Harvey is experiencing severe edema.  They are treating him with infusions of albumin and diuretics.  According to the doctor, the edema will diminish as his albumin count normalizes.  This can be achieved by eating proteins with every meal and taking protein supplements.  We have already seen some improvement since this morning.  When I arrived at the hospital, Harvey’s legs were swollen and hard.  By this afternoon, the swelling was slightly less and the legs themselves were softer.  He telephoned me this evening to say that his left arm and hand have shrunk a little as well.

I asked Dr. Berg what the plan is for monitoring his progress once he is at home.  She is ordering home health visits and home physical therapy.  I could not have been more pleased.  I will have more details on this once we have talked to the discharge coordinator.  Our daughter and granddaughter, Dawn and Claire are driving up from San Mateo tomorrow to join in the celebration and coming home festivities.  It will be a joyous occasion for us all.  Beginning on Sunday, Harvey will be happy to receive visitors.  Won’t you come and celebrate with us?

I hesitate to be too effusive about Harvey’s recovery because of what happened early Monday morning, but I have to say that he looked so much better today.  Apart from the edema which is a result of all of the fluids they have been pumping into him, his color and spirit are much improved.  I arrived around 10:30 AM and he was sitting up in the chair having already walked the corridors with the physical therapist and done  exercises to build up his strength.  He has also graduated to regular food, whatever he can tolerate.  The cardiologist was very pleased with his normal heart rhythm and  blood pressure.  Now, if he could only “pee.”  You can see in the photograph how swollen his hand is.

We had a lovely time just talking and reminiscing today.  I was delighted to enjoy Harvey’s wonderful sense of humor again.  As we were talking, he looked up and said “there’s a woman in black with a harp walking down the hallway.  That can’t be good!”  What was even funnier was when she came to his room and offered to play therapeutic harp music.  He was enjoying himself when he made a similar comment directly to her.  She took it well, as if she’d never heard that line before.  I have to admire volunteers such as she, willing to give their time and talent in such a selfless way.  We decided that a harp is probably better than a trumpet or drums in the ICU.  I could go on; we did!

Just as I was getting ready to leave for the day, the hospital doctor arrived and said he had only good things to say about Harvey’s recovery.  They are going to stop the IV hydration and antibiotics, though he will be continuing with oral antibiotics and potassium.  They also gave him lasix: “Lasix (furosemide) is a loop diuretic (water pill) that prevents your body from absorbing too much salt, allowing the salt to instead be passed in your urine.”  I’m hoping to see a significant reduction in his puffiness tomorrow.  The doctor did say that he would probably be staying for another couple of days because of the setback on Monday.  I told Harvey to just keep quiet about wanting to go home.  The longer he stays, the stronger he gets, and the less likely we will have to go through this again.  

Yesterday’s post was fairly upbeat, so you can be forgiven for being surprised by the title of today’s offering.  At 6:45 AM this morning, I got a call from the hospital telling me that Harvey had been moved back to the surgical floor.  When I asked why, the nurse said that he had gotten light headed and dizzy, his heart rate was too fast, and his blood pressure had dropped precipitously.  When I called the new room number, I was told that he had only been on the surgical floor for about ten minutes, and was moved on to the ICU.  That was when I learned that when his blood pressure dropped, so did he.  Dr. Tandy telephoned me to say that Harvey’s heart was in atrial fibrillation and they were using drugs to bring it back into normal sinus rhythm.  I was quite shaken by all of these events and decided the only place I wanted to be was there at the hospital with him.

When I walked into the ICU, I was relieved to see that he was sleeping peacefully, and there were no outward signs of trauma except for the cut on his nose.  When he fell forward, he hit his nose on “Howard,” which is what he calls his “bag caddy.”  He told me that he did not remember falling, but when he woke up on the deck, he said there were about fifteen people in the room.  He was unceremoniously picked up by two men and placed gently on the bed.  A few minutes later they took him to have a CAT scan of his head to make sure he had not injured himself.  Harvey’s nurse filled me in on what they were doing for him and said that I would be included in the Doctors’ rounds when they discussed Harvey’s case.

The most substantive element of that discussion was that as a result of the colitis, Harvey had developed sepsis:

“Sepsis itself isn’t an infection; rather, it’s our body’s overreaction to an infection we already have. Even if you treat it early, any infection—a simple cut, a urinary tract infection or a more serious illness such as pneumonia—can set off a systemic inflammatory response: The immune system fires out defensive cells and chemicals in a chain reaction, and the body responds like an engine revving out of control. The heart races. Blood pressure plummets. The walls of veins and arteries turn permeable, and the liquid part of the blood leaks into the rest of the body, depleting the blood volume within the vessels and making it harder for them to carry oxygen into tissues. Without oxygen, the brain and other organs begin to die.  www.self.com/health/2012/01/saving-carol-decker”

This defines Harvey’s condition to a “T.”  They are continuing to hydrate him, plus he had a transfusion of two units of blood.  He will probably be moved out of ICU tomorrow, going back to the surgical floor.   I spent the better part of six hours with him today, and observed the care that he was getting.  I am very satisfied that he is being well looked after.  The photograph below was taken in ICU this afternoon showing Harvey looking much more like himself, and “Howard” standing like a sentinel behind him.

Harvey and “Howard”

When I arrived at the hospital today, around noon, Harvey greeted me with a big smile and the news that he is feeling a little better.  He has no pain and he had been promoted to clear liquids and Jello.  There was no pain or discomfort after eating, so he must be making progress.  He tried to pin the doctor down earlier regarding his discharge date and was told that he would probably be in the hospital until Tuesday or Wednesday.  I don’t think he is that anxious to get out this time.  They are taking very good care of him, and he knows he was a very sick guy.  His nurse today was very sweet and willing to answer some of my questions about Harvey’s condition and what we can expect going forward.  I mentioned that I wanted to meet with the doctor next time he visited Harvey, and she said it would be better if she took my phone number and had the doctor call me.  I was very happy to receive a call later this afternoon from Dr. Calkins, who was looking after Harvey today.  She answered all of my questions, giving detailed answers.  She told me that Harvey’s white count is now normal, but his potassium and hemoglobin are still too low.  He isn’t out of the woods yet, but he is moving in the right direction.

Harvey was determined to get out of bed and sit in the chair while I was there today.  I brought the mail for him to review, including some get well cards which touched him.  We chatted for a while, but I could see that he was tiring and looking longingly toward the bed.  His desire to spend the afternoon sitting in the chair actually only lasted about an hour.  We said our goodbyes with a promise from him to call me this evening.  Little did I know that I would be talking to him several times later in the afternoon after I got home.

I was fixing some toast and a cup of tea when I heard a “pop” and noticed that the refrigerator had stopped humming, and the toaster and  electric kettle stopped working.  Everything else seemed to be normal, so I concluded it was a circuit breaker.  But, here is the rub.  Where was the breaker box?  I looked everywhere.  Finally, I called Harvey.  After telling me there wasn’t a fuse box, he told me to press the button on all of the outlets that had one.  I had already done that so I said, “next!”  He then told me to pull out the refrigerator, unplug it and, using an extension cord, plug it into another outlet.  I couldn’t budge the refrigerator.  “Next…”  He told me there is a breaker box outside by the gas meter and that I would need to use bolt cutters to break a plastic tie he had put on to protect it from marauding elderly people.  I managed to cut the seal, but I did not have the strength to slide the bolt.  I remembered that our next door neighbor is an electrical contractor, so I took a chance and knocked on his door.  Thankfully, he was home and was able to open the door and fix the circuit breaker.  He then came in to check that everything was in order.  He assured me that all was well and gave me his anytime cell phone number in case I needed anything.  A little while later, I came to the computer and realized that the network had disappeared.  To make a long story short, I had pressed the wrong button on the outlet in the garage and turned off all the GFCI protected outlets.  Not only am I getting a medical education, but now I’m working on becoming an electrician and a refrigerator mover!

So many little things have happened over the past week that I can hardly put them in order.  Suffice it to say that everything came to a head yesterday morning when I decided enough was enough.  Harvey’s condition had deteriorated so much that he could not even manage to get out of bed without assistance.  The night before, he tried to write a check but couldn’t seem to write the numbers or remember where everything went.  It was heartbreaking to observe.  I determined there and then that I could no longer watch him just disappear.  I was awake earlier than usual, got my shower, woke him up and got him showered and dressed, tucked him in the car and headed for the hospital.  When we arrived around 7:45 AM there was no one in the waiting area.  He was whisked in and seen almost immediately by the ER doctor who ordered fluids, blood tests, and a CAT scan of his abdomen.  Around noon, the ER doctor returned with the verdict.  The colitis was much worse and they were concerned that they could see what appeared to be “bubbles” around the colon.  Fearing a possible perforation, he was admitted to the surgical ICU.  They got him settled in a room at about 5:00 PM, although they had started treating him much earlier. He had a Peripherally Inserted Central Catheter (PICC line) installed, “a form of intravenous access that can be used for a prolonged period of time for extended antibiotic therapy, intravenous nutrition, and blood draws.”  He was given two kinds of antibiotic infusions, and potassium both by mouth and intravenously.

By 10:00 PM, they had moved him to the regular ICU and when he called to tell me, he sounded more like himself.  When I went to see him this morning, I was told that he was not being permitted any food or drink in order to allow his bowels to rest and recover.  Since he has had no appetite for over a month, restricting his food wasn’t a problem, but he is finding it difficult to go without water.  However, they “scared him straight” by telling him how a colostomy works.  The surgeon that spoke to us in the ER said he felt pretty certain that his would resolve with antibiotic treatment.  We are hoping and praying he is right!

Dawn, Claire and Cole came to visit Harvey today and see how he is doing.  He was so grateful to them for coming, as was I, and it was a wonderful boost for both of us.  Their very presence does so much to raise our spirits.  Since Harvey tires very easily, we divided our time with him and went out for lunch, then returned for another hour or so.  In the time we were gone, they moved him out of ICU to general hospital care.  I am told that this should be viewed as a very positive step.

My main concern at this point is that they try to discharge him before he is well enough to come home.  I think he will be there at least through Monday since they will have to get him eating again.  He will also need some physical therapy to build up his strength.  Over the past month, I feel as though I have been the one managing his treatment, not the doctors.  I think there may be a storm a’brewing!

Harvey received two hydration treatments last week and is due for two more this week.  He seems to be benefitting from them in that he now has periods where his energy level rises, and he is more aware of other things going on around him.  Unfortunately, he still feels the need to sleep a lot of the time, but I’m hoping that is a necessary part of his recovery.  Of course, laying in bed for hours has a way of depleting muscle tone and strength.  I believe this is the next key element that needs attention, particularly in view of the fact that Harvey fell early this afternoon and bruised and scraped his arm just above the elbow.  I managed to stop the bleeding and bandaged him up as best I could.  He insisted that he had not felt faint before falling, but was simply not strong enough to balance on one leg while trying to get dressed.  I have since written to the doctor asking if Harvey might benefit from some physical therapy, and I’m anxiously awaiting his response.

In the meantime, I have shown Harvey some exercises using a resistance band, and he is walking to the end of the street and back.  Because I was worried about him, I watched as he made his way up the street and thought to myself how far away he was and how ‘little’ he looked.  This is hearkening back to when I sent Dawn off to school on the “Tube” for the first time.  Speaking of Dawn, she suggested that her father rate each day with a smiley face or a sad face depending on how he feels in order to gain perspective on his progress to getting well.  I mentioned that sometimes he feels good in the morning, but by the afternoon, he feels awful.  She then suggested he add an arrow up, down or sideways to depict good, bad, or the same respectively.  We all laughed at the likelihood of any of this happening, but after we hung up, Harvey said that he was thinking about how to create a data sheet that would have all kinds of arrows and figures, going every which way, each one representing some aspect of his recovery.  He would then give it to her to analyze and present in a useful way.  His enjoyment of that exchange was music to my ears.

A couple of nights ago I had to speak sharply to Harvey about the importance of his participation in his own recovery.  I felt as though I was running my legs off doing things for him and wracking my brain for food ideas to tempt his non-existent appetite, when in fact, I was enabling him in becoming an invalid.  He must have taken to heart what I said because he awoke the next morning, got his own breakfast, and ate it without staring at it for 30 minutes and pushing it around the plate.  That is also when he decided he would walk to the end of the block every day.  I view this as his way of taking back some of his control, and that’s a good thing.  I never wanted to be the controlling partner in this operation!

Harvey was feeling well enough that we decided to go ahead with our plans to drive to Inverness.  We had a lovely time visiting with our old friends and were glad that we had made the trip.  After staying the night in Petaluma, the next day we drove to Santa Rosa and visited with another old friend and her daughter.  By the time we started for home, and I had taken a short shopping detour at the Vacaville Outlets, we had driven about 300 miles.  In retrospect, the drive may have been a bit ambitious, but we needed to get away.  Harvey was pretty worn out and slept quite a bit once we got home.

We had a few short social outings over the week and Harvey tried very hard to participate, but his energy level is so very low, that he is too exhausted to even talk.  We were both looking forward to our daughter and her family coming to visit on Sunday.  Harvey managed to stay up to chat and have lunch, but soon needed  to lie down and, even after a couple of hours sleep, he was only able to muster a weak goodbye when they took their leave.  I discovered that he was running a fever and immediately broke out the Tylenol and ice packs.  Miraculously, about an hour after they had departed, he was up and looking for his cake and ice cream.  The fever was gone.

While Harvey was sleeping, the family and I decided that he was becoming dehydrated again, similar to his condition before he was hospitalized.  So, I utilized the YourHealthOnLine option and wrote an email directly to Dr. Suhag describing Harvey’s condition and asking him if we could schedule him for hydration infusions on a bi-weekly basis, just until he starts to feel better.  Happily, he agreed and we are due to go to the infusion center this afternoon.  This morning, we saw Harvey’s primary care Dr. Schneidewind for a hospital follow-up.  He did a brief exam, but spent most of the time helping us understand why Harvey is so tired, why his back hurts, and what diet he should try to follow.  He said that Harvey is still anemic and his red blood cell count is low enough that it would make him very tired.  The bottom line is that he will gradually begin to feel better as his colitis eases and he begins to eat and build up his red blood cell count.

During the visit on Sunday, my son-in-law, Dirk, suggested that we should have a juicer to make our own nutrient rich drinks.  Dirk was pretty adamant and we were considering it.  Then today, Dr. Schneidewind said “you should consider getting a juicer!”  Harvey and I looked at each other and just grinned.  We wouldn’t put it past Dirk to have put a call in to the doctor himself.  What a great family we have!!!