karenulijohn

On Tuesday when we were at Harvey’s primary care doctor’s office, I could not help but reflect on the differences between the doctor visits I remember with Dr. Rowntree in London, and the current visit. I remember how Dr. Rowntree would come round his desk with his arms akimbo, calling a greeting and moving to escort me into the room.  All the while, he would be asking open ended questions about family, traveling, work, school, the whole time eliciting information and encouraging a feeling of visiting a favorite “uncle.”  In other words, he got me talking.  Eventually, he would inquire about my health and what had brought me to his office on this particular day.  While I talked, he would make notes on a piece of quarto paper that had a hole punched in the corner, which would ultimately end up in my folder held together by a piece of colored yarn.  Occasionally, he would thumb through the pages, looking at notes from past visits, searching for patterns of behavior or complaint.  Then he would examine me, all the while chatting about his mother or a theatrical performance he had enjoyed.  Finally, he would make a diagnosis and, if necessary, prescribe a remedy.  He would always ask if there was anything else I might want to discuss, and then he would put his arm around me, tell me I was going to live to be one hundred, and escort me to the door.  I ALWAYS felt better when I left his office.

In complete contrast, the visit to Harvey’s doctor began with the usual vital signs check performed by a medical assistant.  We waited in an examination room, and when the doctor finally came in, he said “Hello.”  He did not use Harvey’s name.  He immediately sat down at the computer station and began typing.  It occurred to me later that he might have been entering notes from a previous patient.  After a few minutes of him typing and us staring at him typing, he said, “This is a hospital follow-up?”  That question only required a one word answer and that’s about as long as he waited before he began typing again.  “You must be about finished with the antibiotic!” he said.  I offered that it was a fifteen day course, so there were about seven days left.  I did not comment on the fact that he had prescribed it in the first place, but I did roll my eyes at Harvey.  More typing… Another five minutes passed and Harvey finally asked a couple of questions which were answered completely.  A brief examination followed and I had to remind the doctor to look at the pressure sores for which he had prescribed the antibiotic.  After a cursory look, the examination was finished.  We were dismissed, and he kept right on typing.  I have no clear idea what pressures doctors today endure, but I suspect they are significant, so I am trying not to be too critical.  But, if I had a choice, I would prefer to visit a doctor like my beloved Dr. Rowntree.

Harvey is continuing to improve gradually, gaining strength while the edema is diminishing.  The home nurses are very encouraging and friendly, aiding and approving our efforts to get him well again.  The physical therapist, Kristen, came on Monday and after an evaluation, she put Harvey through his paces, giving him new exercises for strength and balance.  I am very proud of how he has “gotten on board” and performs the exercises willingly and without complaint.  He has also enjoyed the visits from friends.  Not only do they make the day go faster, but he has less time to think about how he feels.  By the way, I decided to forego the diamond bracelet (for the time being) and went ahead and bought a countertop convection oven.  I am ever hopeful that a new kitchen appliance will inspire me to create enticing and delicious meals, at least long enough to get him well again.  We haven’t had popcorn for months!

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!