karenulijohn

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!!!

Yesterday, Harvey had a follow-up appointment with Dr. Suhag.  When asked how he was feeling, Harvey replied that he supposed he was getting better but the progress was so slow, it was seemingly non-existent.  He went on to say that he was somewhat depressed by the fact that each morning he expected to feel significantly better, but in actuality, could detect no change.  Dr. Suhag was sympathetic, saying that Harvey has been through a lot, particularly in the last several weeks, and, taking into consideration his age, he was really progressing quite well.  He pointed out that the diarrhea was somewhat controlled, there was some weight gain, and no fevers detected.  He also reviewed Harvey’s recent blood tests, saying that all the levels were in normal range, except his proteins.  We would need to work on his nutrition.  Realizing that Harvey was still looking pretty glum, Dr. Suhag likened Yervoy to a Mack Truck hitting him.  The truck was now gone, but Harvey was still left with many broken bones and internal injuries.  It will take time for everything to heal, perhaps four to five weeks.  I had to smile when Harvey reiterated this to the study coordinator and said it would be two to three weeks.  I guess you really do hear what you want to hear.

Before we left the Doctor’s office, Harvey had another blood draw for the study.  I was somewhat concerned since they gave him a blood transfusion less than a week ago, and already he has had two fairly substantial blood draws.  He was a little unsteady after the one yesterday, so we came home right away, and he was asleep on the bed in moments.

I have suggested that Harvey needs to get out of himself a bit and try to be engaged in something he really enjoys.  To that he replied that he enjoys sleeping!  He takes the point though and is going to go to a Rotary Board meeting this afternoon.  We are also planning a short driving trip to Inverness and Santa Rosa, with a stay at the Sheraton Sonoma County in Petaluma which is surrounded by a wonderful marina.  More doctor appointments await us upon our return, but maybe a few days away will give us both a boost.

As I predicted, Wednesday was a very happy day on so many levels.  By the time I arrived at the hospital, I had missed both Dr. Suhag’s  and the hospital doctor’s visits. Fortunately, Harvey was able to relay, to my satisfaction, most of the information that he had heard.  The best news, of course, was that his blood levels were now in normal range, and he would be discharged.  However, they were still a little concerned about his anemia, so they  scheduled him for a blood transfusion before his discharge.  After cross matching his blood, they said it would take a little while to get the blood from Sacramento.  We decided that hospital time is counted in hourly increments.  It wasn’t until about 3:00PM that they began the transfusion.  The only home treatment is to take two Immodium an hour before each meal.  That way, he will be able to benefit from the nourishment he is consuming.   It will take several weeks for Harvey to recover and return to his “normal” self.  I can wait, as long as he is going in the right direction.

Our daughter and granddaughter arrived at around 12:30PM with love and kisses all round.  Harvey’s face really did light up when they walked into the room.  We visited for an hour or so, and Harvey began looking longingly at the bed.  So, we tucked him in and went out to have a bite of lunch.  I was pretty confident that he would sleep most of the time we were gone. We had a lovely lunch together, catching up on what has been going on in their lives.  I especially enjoyed hearing about Claire’s (granddaughter) plans for her sixteenth birthday on Thursday.  She is so lovely and such a pleasure to be with.  Of course, I don’t have to tell anyone how I feel about Dawn.  I’m just crazy about her and everything she does (pretty much!).  I am friends with a wonderful group of ladies here in Lincoln who were having an afternoon get together, and I so wanted Dawn and Claire to meet these wonderful ladies.  They welcomed us with hugs and laughter, and we enjoyed an hour of delicious food and story telling.

When we arrived back at the hospital, Harvey was about a third of the way through the blood transfusion.  We visited and laughed and teased as usual and when it came time for him to be unhooked from all of his tubes and wires, he became a little impatient.  I reminded him that they could decide to keep him, just for spite, and he calmed down.  He did not want to stay another minute longer than necessary.  We said goodbye to the girls in the parking lot and they headed home to San Mateo.  What a wonderful day!

Since coming home, Harvey has improved tremendously.  I have tried to follow the example of the hospital with mealtimes and just let him eat what he wants of anything.  He managed to eat about three ounces of salmon, some yellow squash, and a pear half.  He had a very good night, and in the morning he had a scrambled egg and a pear half.  Those pears seem to go down well.  Last night he enjoyed Teriyaki vegetable rice, a “Karen Special.”  This morning he went for a blood test at Twelve Bridges and has an appointment with Dr. Suhag on Monday.  I’m so pleased that they are looking after him, making sure that he is making good progress.  He just came in the door, looking a little harried.  It turns out that Twelve Bridges would not do the blood test because he did not have the proper coding number.  He ended up going down to the hospital.

To everyone who follows this blog and has sent good wishes, love, and prayers, thank you from the bottom of our hearts.  It has meant so much to both of us.  We love you!!

So many things have happened in the last four days since my last post, I hardly know where to begin.  I focused mostly on the colitis, but Harvey had been experiencing profound exhaustion, lack of energy, complete loss of appetite, considerable weight loss, and depression.  He spent most of his time laying on the bed, and slept about 18 to 20 hours per day.  He displayed no desire to get up , even if he could.  I was becoming very anxious about what was happening to him.  On Friday afternoon, we went for a ride in the car and upon our return, Harvey did not seem to be aware of his surroundings.  When he finally exited the car, he said he needed to close the garage door, which, by the way, was already closed.  When he finally made his way into the bedroom, he felt very hot.  He had a fever of 102 degrees F.  Naturally, I called the on-call Doctor and reported this, mainly because we were again heading into a weekend.  Dr. Gowda returned my call and we determined that the Lomotil was probably responsible for Harvey’s confusion, so we discontinued it.  On Sunday, he was still running a low grade fever although the confusion had subsided, but his speech was very slow and somewhat slurred.  We decided that when I called Dr. Suhag’s office on Monday, we were either going to go to the ER or get the Dr. to agree to admit him to the hospital.  We waited dutifully for return calls which never came, until finally, we just drove to the ER.  He was taken to a room immediately when they saw that his blood pressure was 70/50 with a very irregular pulse.  We spent most of the afternoon there while blood tests, chest Xray, and ECG were ordered.  Around 4:30PM, the ER Doctor came in, and we told him that we have done everything that we’ve been told to do in order to get him back on his feet, but our efforts were going unrewarded, and we felt it was time that the professionals intervened, namely the Doctors.  While he was unable to admit Harvey himself, he said he would make a good case for it to the “hospitalist.”  The hospitalist turned out to be an internist connected to the hospital who coordinates admissions for ER patients.  He was very kind, asked a lot of the same questions, and came to the conclusion we wanted.  Harvey was “in.”  It took another hour or so to get him to a room, but he was transported at about 5:30PM.

While we were waiting to go to the room, Dr. Suhag came to see Harvey.  He was very calm and kind, listening to all of our concerns.  Finally, he came around to where I was standing and put his arm around me and said, “this is not serious.  You mustn’t worry about this.  It’s going to be all right once we get his potassium, sodium, and red blood count up to proper levels.  He’s going to be fine.”  When I told our daughter what the Doctor had said, she commented that he was quick to pick up on my MO.  It did make me feel better, and I was grateful.  Harvey was given a very nice single occupant room on the first floor near the gift shop.  A nurse and a nurse’s aid introduced themselves and gave us a quick tour of the room and its amenities.  Almost immediately, they began to give him more fluids intravenously, and would continue giving him up to six bags of Potassium throughout the night.

When I arrived this morning, he was sitting up in a chair facing a delicious looking breakfast of fresh orange slices, scrambled eggs, sausage, country potatoes, oatmeal, and coffee.  He managed to eat most of the eggs and all of the orange slices.  That is actually the most solid food he has had in two weeks. The hospital doctor came and said Harvey would be there another night or until all of the tests had been completed and his blood levels have been normalized.  I left him for a couple of hours while he slept, and when I returned he was sitting, looking at a lunch of sliced turkey, gravy, mashed potatoes, mixed vegetables and fruit.  He loved the potatoes and gravy, ate all of the fruit, but gagged over the turkey.  We took a walk down the hall, dragging his intravenous “buddy”.  I was surprised at how he seemed to be so willing to try to be active and to actually eat. It turns out that the nurses told him that if he didn’t get moving, he wouldn’t get to go home.  In fact, they had been trying to get a urine sample all morning with no luck.  Finally, around 1:00PM the nurse came in and said that if he wasn’t able to provide it, they would have to use a catheter.  Miraculously, within 20 minutes, a sample was produced.  That nurse simply provided a most effective incentive.

I had a lovely phone call from Harvey at about 6:00PM this evening.  He thanked me for coming to the hospital today, and for sticking with him through all of these trials.  He missed me and was looking forward to my visit tomorrow.  Our daughter and granddaughter are coming up from San Mateo to visit with us as well.  It will be a happy day, made that much more joyous because the Harvey I know and love is coming back.