Tuesday, December 13, 2011

Six month.....today. Below is an excerpt from "My Story"

For those who don't know, here's a little history. Mark had been complaining of abdominal pain for months. He was also having nausea & vomiting, as well as weight loss. The doctors told Mark he had the stomach flu. On March 30th he was in so much pain I took him to the ER. At first they thought he might have a kidney stone. They did a CT of the abdomen, which showed a "hypo-density " on his liver, as well as thickening in his ascending and transverse colon. He was then sent home with instructions to follow up with his PCP.

Mind you, during the past year, Mark was assigned a new PCP every time he scheduled an appt. He never saw the same PCP more than once. They would tell him, his PCP wasn't there anymore. They kept assigning him "locum doctors" A locum doctor is a doctor who works in the place of the regular doctor when that doctor is absent, or when a hospital/practice is short-staffed. Mark never had any continuity of care!

Prior to Mark seeing another ("new") PCP. An order was written for Mark to have a colonoscopy and an MRI of his liver. Mark had a colonoscopy on May 5^th. The finding from this procedure was "ulcerative colitis"

Complications

Repeated swelling (inflammation) leads to thickening of the intestinal wall and rectum with scar tissue. Death of colon tissue or severe infection (sepsis) may occur with severe disease. Mark's CT also showed thickening in his transverse and ascending colon

We received a letter in the mail notifying us of these findings. The letter stated, "No follow up was necessary"

May 27th Mark had a follow up with again another (new) PCP. We discussed the CT findings that Mark had in the ER back in March. His doctor told both Mark and I that Mark had a fatty liver. We were instructed to watch the "total fat" in his diet. Mark received orders for a chest x-ray, labs, & Ultra sound of his gallbladder. The doctor wanted to get a closer look apparently the CT also showed some gallstones. We told his PCP that Mark had an MRI scheduled for June 5th. His PCP told us that because it was already scheduled to go ahead and have it done. We were told to follow up in six months.

We both left that appointment feeling like a weight had been lifted off our shoulders. Mark had a fatty liver. We were thinking that explained the "hypo density" on Mark's liver. Mark had the MRI June 6th at 7am. He was home by 8am.

Now, our story starts........6 months from today.

Friday on June 9th............ at about 9 PM Mark started to have severe pain. It took me an hour or more to convince Mark to let me take him to the ER. He kept telling me he'd be okay, but when I found him siting outside. He told me he didn't think he was going to make it.

We arrived at the ER at 10-10:30 pm. They medicated Mark to treat his pain & ordered some blood work. We told the ER doctor, that Mark had an MRI earlier in the week. We asked what it showed. The doctor told us "it hasn't been read" Mark and I waited and waited for the lab results and for Mark's pain to get under control. Once his pain was under control and he was dozing. I told Mark that I was going out to the car to take a nap. At 1am Mark came out to the car to say they were going to admit him. He said the doctors were concerned about his low platelet count (52), and the plan was to transfuse a few units to get Mark's platelets within or close to the normal range. We waited in the ER for a bed. Mark slept off and on. At 3am, Mark told me to go home to get some. He told me he would be okay.

Saturday June 11, 2011.I got to the hospital at 9-9:30. Mark was lying in the bed, with his clothes on. I offered to help him change to make him comfortable. Mark told me they were planning on discharging him. He didn't even get to his room until 8:30 that morning. He had spent the whole night in the ER.

At 10am, one of the many doctors that we would see throughout the weekend came to explain why they had decided to discharge Mark. The original plan was to transfuse some platelets, but after review of Mark's labs, Mark's platelets had been chronically low, but stable. At this time we both asked again about Mark's MRI. Again we were told, "it hasn't been read." We were than visited by the pharmacist, who wanted to know if Mark needed any refills on any of his meds, prior to discharge. The CNA came in to give us a bag to pack up Mark's belongings and to take his vitals , prior to his discharge. Now we were just waiting on Mark's walking papers.

11:30 Mark was complaining of the abdominal pain and requested some medication. He was given an oral medication versus IV. Mark asked why he wasn't given the medication through his IV. I explained that prior to his discharge, the doctors needed to make sure the meds he would be sent home with would treat his pain adequately. After about 1 to 1 1/2 hours later, Mark was still in severe pain. The nurse called the doctor, who came in to assess Mark. He asked Mark if he had his heart set on going home. I can still see Mark shaking his head yes. The doctor explained to Mark that he felt that it would be a good idea for Mark to stay over night for additional observation, Mark agreed. We asked again about the MRI, still not read. Most of Saturday remained uneventful and Mark told me to go one home to get some rest, again he told me he would be okay.

Sunday 6/12/2011............ I got to the hospital around 9-9:30. Mark told me I just missed the doctors. He went on to say that the doctors came to go over his MRI. It was read late Saturday night. Mark told me the MRI showed he had a liver mass that was growing up into the right side of his heart. He told me to ask the nurse to call the doctor so he could go over the results with me.

The doctor came into the room to review the MRI results with me. I couldn't believe what I was hearing. We were so unprepared. Below you can read a brief report of Mark's MRI. Mark and I at this time had no idea what the next 24 hours held for us. We never imagined or thought that we had less than 24 hours to be with each other. We held hands, we kept saying I love you to each other. This very same day Mark went from being alert and oriented to being non-response. I was having a hard time trying to process all that was happening..........

FINDINGS: Large infiltrating liver mass, most concerning for hepatoma. There is tumor thrombus within the majority of the portal vein with possible extension into the proximal superior mesenteric vein as well as tumor thrombus invasion of the inferior vena cava with extension into the right atrium.

So Mark had a huge liver mass, which infiltrated all his major blood vessels. The superior mesenteric vein (The SMA supplies the distal duodenum, jejunum, ileum, and colon to the splenic flexure.), portal vein, and hepatic vein. As well as the inferior vena cava and up into his right atrium. And I quote "Given the infiltrative nature of the mass exact size is difficult to determine; maximum dimensions measured are approximately 11.7 x 11.0 cm with craniocaudal extent of at least 12.4 cm this, "HOWEVER IS PROBABLY AN UNDERESTIMATION"

This MRI laid there in radiology for close to a week before it was ever read. I don’t understand why the tech didn't bring this MRI to any ones attention at the time the MRI was being done.

1PM, Mark's nurse came in with some medication for him to take. She explained that his potassium was elevated (6.1)

Possible Complications

Arrhythmias
Cardiac arrest
Changes in nerve and muscle (neuromuscular) control

and that he needed to take the medication to help bring it down.

Mark was never put on telemetry as am elevated potassium could cause some cardiac issues. See above
My boss and I were the ones who questioned the doctors why Mark was not on telementry. Mark was then placed on telemetry, and that's when it went from bad to worst!

The medication given to Mark was Kayexalate (Sodium polystyrene sulfonate) is used to treat increased amounts of potassium in the body. Sodium polystyrene sulfonate comes as a powder and suspension to take by mouth.

Kayexalate (sodium polystyrene sulfonate) powder

Detailed View: Safety Labeling Changes Approved By FDA Center for Drug Evaluation and Research (CDER)

January 2011

Summary View

WARNINGS

Colonic Necrosis

Cases of intestinal necrosis, which may be fatal, and other serious gastrointestinal adverse events (bleeding, ischemic colitis, perforation) have been reported in association with Kayexalate use.

By 2pm Mark was in severe pain. He could not get comfortable. Standing, sitting and lying down did not help. I went to let the nurse know. The nurse gave him simethicone (something for gas, and told him he needed to get up to walk. The doctors and nurses felt Mark's pain was from constipation and gas! At this point it went from bad to worse, it was all down hill from here. Mark got up to use the bathroom. When he came out he told me that he passed a lot of blood. I told him the next time he goes and if there was any more blood, not to flush the toilet. About 30-minutes later Mark went into the bathroom. This time he called me into the bathroom. There was dark maroon blood in the toilet. The nurse was called as well as the doctor. Mark was taken down to radiology. When he returned he went into the bathroom. Mark called me in for assistance. When I went into the bathroom, there was blood everywhere. What was happening is that the doctors were too busy thinking Mark was just constipated and had gas, they failed to diagnosis what was causing Mark such severe pain. What they missed was, Mark had Acute Mesenteric Ischemia. On top of that his X-ray showed that his colon was distended and he had an ileus (small bowel obstruction) He had also been given kayexalate earlier in the day for an elevated potassium level.

Mark continued to complain of severe pain. He kept telling me "I feel like I am going to explode" and stated how he wished he hadn't "taken that medication," given to him earlier, (kayexalate) The doctors and the nurses finally gave Mark something through his IV. The medication had very little effect. By this time Mark's pain was out of control. On top of that, Mark had to go back to radiology so they could get additional views of Mark's abdomen.

When Mark returned from having his X-ray. The doctors could see that Mark's condition was deteriorating. He asked Mark what his wishes were if he should stop breathing or if his heart was stop beating. Mark chose to be a "full code" He wanted them to do what they had to do, so he could keep living. Mark WANTED IT LIVE! Because of Mark's distended bowel and ileus, the doctor ordered an NG tube. It was to help decompress Mark's abdomen & hopefully decrease Mark's pain. They also decided Mark needed closer monitoring and transferred Mark to a step-down unit for closer monitoring/observation. The floor Mark was on was for stable patients. This was around 8:30-9pm.

Mark wanted me to run home real quick to get something that someone left outside. He wanted to make sure I got it. I was back at the hospital within an hour. What took so long was the door going out to the parking lot where my car was parked was locked. I needed to exit through the emergency room. Which was on the opposite side of the building where I was parked.

Sunday 6/12/2011, approximately 8pm When I returned, Mark had already been transferred to the step down unit. Mark was still alert and oriented. The nurse he had was excellent. She explained & told me everything that was going on with Mark. She also took Mark's pain seriously and medicated him as needed. Mark continued to have numerous dark maroon stools. I kept trying to get close to him, but so much was going on, but he knew I was there. I told him I loved him and he let me know he loved me.........the last time Mark said I love you to me. The words were not audible, but I could read his lips. That was the last time he uttered anything or responded to any interactions.

During this time, a doctor came in the room asking if Mark had a living will, (he did not) the doctor, discussed with me Mark's prognosis. He explained that I was going to have to decide about Mark's care and "code" status. This doctor/hospitalist (A hospital-based general physician. Hospitalists assume the care of hospitalized patients in the place of patients' primary care physician) was the doctor who admitted Mark from the ER. He apologized to me and told me how sorry he was. He told me how they thought Mark just had gas and was constipated.

Labs were being checked hourly. They were monitoring Mark's H&H and lactic acid. His H&H was low, but stable, but his lactic acid was on the rise. Mark's nurse documents, "H&H stable, patient continues to have frequent bloody stools, K is 4.8, blood pressure stable, lactic acid now 8.9 @ 2230/increase from 7.5 @ 1830, patient is becoming sleepy, but oriented x4 when woken up. Writer expressed concerns over continued bloody bowel movements, change in mental status and increasing lactic acid, in light of patient's full code status and a suggested transfer to ICU, MD agreed and placed order from transfer"

Blood tests

In a series of 58 patients with mesenteric ischemia due to mixed causes:

• White blood cell count >10.5 in 98% (probably an overestimate as only tested in 81% of patients)

• Lactic acid elevated 91% (probably an overestimate as only tested in 57% of patients)

Not only was Mark's lactic acid on the rise, so was his WBCs on 6/10, when Mark was in the ER. His WBC was 3.2 (below normal) and went up to 20.6 (above normal) His labs also showed a slight shift to the left. He was septic!

Monday 6/13/201, Midnight While they transferred Mark I was shown where to wait until they got Mark settled. The nurse caring for mark bought me a bag of chips and something to drink. I will never forget that nurse, she went to extra mile to also take care of me. Thanks Alice RN.

When I was taken to Mark's new room I never left his side. I held his hand, not letting it go. I kept talking to him, letting him know I was there. I told him over and over again how I loved him so much and that my mom, dad, bother, sisters, girls and grand-daughters all loved him. The nurse was in and out. He did his best to keep Mark comfortable. Mark was groaning, it was obvious to the nurse, the doctor, and myself that Mark was in severe pain. He was also very restless.

Monday 6/13/2011 0715...............It was now morning. At about 7:15 a team for doctors came in to discuss surgery. They explained that they could go in to remove Mark's dead colon, but they would have to leave him opened and take him back to the OR daily to see if any further resection needed to be done. They explained that this surgery would only cause, Mark additional pain & suffering. They also pointed out that this would not change anything with regards to Mark's liver mass. They told me my other option would be to provide Mark with comfort care.........Hospice!

HOSPICE ? That was the last word I thought I’d hear!!! I was thinking what happened? Mark was alert and oriented just hours before! They were even going to discharge him on Saturday.........We had so much more living to do TOGETHER. We were suppose to grow old TOGETHER. Besides we still had so much more to say!!!!

The liver mass had already infiltrated all his major blood vessels. There wasn't anything they could offer for treating that, it was too far advanced. The decision was left up to me and me alone. I had to decide between, surgery and comfort care. I was alone, with such a big decision. We never discussed the "what ifs" I knew that I didn't want to cause Mark any further pain & suffering. Besides the surgery wasn't even going to change Mark's poor prognosis.

The doctor that I saw off and on throughout the night came in, again he apologized. stating, "We thought he was just constipated and had gas.” He also recommended Hospice. I thought, do I have them do the surgery, which would only cause additional pain and suffering, and not really change Mark's prognosis or choose comfort care. I chose hospice. I wanted Mark to be comfortable. I saw him in so much pain earlier and I didn't want to cause him anymore!

Prior to admitting Mark to Hospice, my Mother came in for a visit and Chris came in to sit with Mark and I. I was so happy to have her there, as I was not thinking straight. She was so supportive and even thanked Mark for the help he so freely and willing gave to our parents. Donna also dropped by to give me/Chris the paperwork for FMLA

0900- The nurse with Hospice came in, and the paperwork was completed to admit Mark. A chaplain also came into the room to speak me, comfort me, and pray.

0930- Mark’s nurse came in and started to remove Mark’s IVs. I knew this was the beginning to an end. I felt like I/we had all given up on Mark. He was then transferred to Hospice.

1100- Mark was transferred to the hospice unit. I chose to leave in Mark’s NG tube something I wish is hadn’t decide on. I thought it would keep him comfortable, but it was never hooked up to suction. The Nurse, NP and then MD came in to do a full assessment of Mark. It was explained that I could lay in the bed next to Mark, could stay over night, that pets were allowed, and that a food tray would be ordered for Mark, but it was really intended for me. The room had a fridge in it and there was a shower that could be used on the unit.

The priest came in per our request and Mark was given his last rights. Both Chris and I were there.

I laid in the bed next to Mark, holding his hand letting him know I loved him so much!!!! Chris asked about a happy memory I had of Mark and I. I told her about our trip to Mount Rushmore. On the way there and back, both Mark and I chewed gum. When our jaws got tired, we would take the gum out of our mouths, put them together and throw it out the window. We would joke saying years from now scientist would find a piece of it and wonder about it’s DNA =)

I told Chris about Mark’s thumbnail I jokingly called his “cone head fingernail.” I took a picture of it. I told her how just last Saturday we compared our pinkie fingers, & Mark said he liked my pinkie. We thought it was funny how small mine was when put beside his. Chris and I took several pictures of our pinkie side by side. I then got up and rubbed lotion on Mark’s arms. He has two tattoos on his arms that I always liked. We took pictures of them too.

Mark’s respirations were fast and moist. His cough was weak. The doctor stated they could order something (if needed) to dry up Mark’s secretions.

I continued to lay with Mark. At one point I noticed that Mark’s hand and arms looked mottled. I sat up to take a closer look and asked Chris if she thought Mark was mottled or if it was bruising from his IVs. She was not sure. I think she was trying to protect me.

The NP completed the FMLA paperwork and gave it back to Chris. I mentioned to Chris that Mark had not been given anything for pain. Chris went to notify the nurse. Within 30-45 minutes the nurse came in and gave Mark, some medication. Shortly after, receiving his pain medication. I noticed that Mark’s respirations were slower, no longer moist, were quiet, & very peaceful.

I continued to lay next to Mark oh, how I loved him and still do. I always will. I then noticed more time passed between respirations and then nothing. I could see out of the corner of my eyes that Chris left to room to get the nurse/doctor. I shook Mark, Mark took another breath and that was his last. I believe it was about 1424, but the death certificate states 1500. The nurse was there and as I turned around, Barbara C, one of my co-workers, was just coming in for a visit. She witnessed Mark’s passing. She started crying saying she was sorry.

This is the moment my whole world fell apart...............I laid next to Mark for a couple of hours. People came in and out to speak with me, as well as to visit, Rick, Brandon, Debbie and my mother.

I wanted Mark’s wedding band, so I could wear it on a chain around my neck. I reached down to Mark’s ring finger. His finger felt sweaty. Which I thought that strange, but the ring slipped off his finger and right into my hand. It's been around my neck even since!

The priest came back in to speak with me. He was a comfort. He gave me a rosary to put in Mark’s hands & he prayed.

If I had my way, I would still be laying right next to Mark holding his hand. Telling him how much I love him, but there came a time when I had to leave. Walking out of the room was ONE of the worst things I had to do in my life. Mind you, when I say walked out of the room. What I really did was backed myself out of his the room. I could not turn my back on him!

THE WORST was making the decision on my own to make Mark a DNR. Mark I did not give up on you. I made that decision out of love. I did not want you to continue to be in pain. I could no longer be selfish. Instead I became selfless, like you.

I know too, that you loved the Lord with all your heart, soul, mind & strength and when you took your last breath here on earth, you took you first breath in the presence of the Lord! For scripture says “absent from the body, present with the Lord!”

You have a lock of my hair & I have a lock of yours.

I love and miss you Honey-bear,

Love Kidd