Summer 2014

June 2, 2012

The last couple of weeks have been pretty much routine. It takes Randy a lot longer to get ready in the morning because we have so many things to do. There is weighing and testing and attaching to batteries. Then he washes up but doesn't get to take a shower yet.

We eat breakfast and I clean the kitchen. Then it seems I cook lunch and clean the kitchen. Then comes dinner and I clean the kitchen. We had become so used to using prepared foods such as John Soules Chicken and Beef. They are tasty and easy and I could throw together salad and fajitas or whatever. Now we have to watch every bit of sodium and one reason the beef and chicken were so tasty is because it was chock full of salt (sodium).  I have come to the decision that I need to cook a bunch of meat on one day and freeze it. Then I can just take out what I need for a meal. 

We have been to the movies and been to the store. Everywhere we go we have to take his backup controller and batteries.  We can’t take a chance that we will lose power and the pump will stop. It is a given that it would kill him. Other people have survived without their pump for about 24 hours. Hopefully the pump will make his heart stronger.

It’s been uneventful as far as alarms since the first night. Randy started changing from batteries to the plug like he has to do when he is going to be sleeping. As soon as he plugged in the first battery an alarm started going off. He went ahead and changed the other battery.

June 29, 2012

We had a checkup today. It’s been almost 2 months since Randy received his heart pump. Two weeks after he was released he was back in the hospital with a terrible rash. Evidently he had a reaction to Lasix and was receiving such massive doses that it just exploded all over his body. He still has some rash but not near as bad. His feet have dried out so much that he has cracks in his skin. I put lotion and Aquaphor on it but it just isn’t enough. We go back to the dermatologist on Monday so hopefully they will have a solution.

One thing I brought up at our appointment is the forgetfulness Randy seems to have. I’m not talking about the stuff he always forgets like putting up his dishes but simple stuff that should be almost as familiar as breathing. Julius, our nurse-practitioner, was glad we mentioned it. The doctors had a meeting this week that included this discussion. The point was whether or not there needed to be a counselor involved in the process to talk about changes. I wholly encourage it as I had been dealing with feelings of guilt because I expected Randy to have total mental faculty.

He still didn’t get his shower bag yet. That will come in August so I guess we just keep faking it. 

June 30, 2012

Randy is out with Zanda right now. It’s nice to have a break. We do have company coming and he has gone grocery shopping and, 2012to do a few other errands.

December 28, 2014

It's been way too long since I have updated this blog but I'm going back to May of 2014 to start the end of this story. I had knee replacement surgery on May 15 and it took me tooks weeks to recuperate and rehabilitate. It still took a long time to get moving. 

Randy had to go through a time of changing his own dressing. Visiting me at the hospital he was exposed to a lot of germs and unfortunately contracted MSSA. In mid July he started on IV infusion through a PICC line. A week later he performed the wedding of our son & his wife, Jeremy & Patricia Weidler. I made him a custom vest so his equipment wouldn't be so bulky. 

In August he was allowed to go off the infuser and just use the gravity drip that took 30 minutes a day. This went on until he got the call for the transplant but that comes later. On October 6 I noticed something unusual about his driveline wound. I took a picture of it. The problem was that the dye that marked where the driveline should exit his abdomen was somehow not visible. I pushed on his abdomen and I could see it but I wasn't about to pull on it. 

Each time I changed his dressing over the next two weeks the gauze was very saturated with bloody issue and pussy discharge. I continued to take pictures and notified the clinic. I was told this could be a bad or good. Throughout this process they continued to do sonograms of his abdomen to track the infection or possibility of fluid. 

On October 15 we buried my mom and three days later Randy got the call that there was a heart available. We hurriedly prepared ourselves and started letting the family know. We arrived at the hospital about 9:30 and began the processes of testing blood, urine, and whatever else they could get to. 

At 4:00 they took him down to the the OR and the family gathered in the large waiting room. The actual surgery began about 7:30. There was another woman whose husband was getting a double lung transplant from the same donor. Randy's surgery went on until about 3:00 in the morning. We all headed home for sleep since we wouldn't be able to see Randy for another hour or so and he wouldn't know we were there. 

The next day began the routine of going in and washing, masking, and gloving. They slowly took Randy off of the anesthesia and blood pressure meds but his pressure would drop frequently. His was put on Nitrox and then they finally put him on dialysis because the fluid was not coming off of his body. 

After 2 weeks Randy finally woke up but of course could not talk because of the ventilator. He did communicate with his eyes which for a time were bright and responsive. When the doctor came in to replace the PICC line with an A Line he injected Randy with a local for pain. The doctor said Randy turned and looked at him which was the main reaction to pain that Randy had. Every once in a while he would squint his eyes like he was in pain but for the most part he seemed okay. 

One of the medications they gave him to keep his blood pressure up caused some damage to his hands. This was very hard for me to deal with and I knew that eventually they would be amputated. I was told they would just fall off by themselves. His big toes had fungal infections and began oozing. They were also darkened and damaged from the medication.

On Friday, November 7, Randy finally moved his feet. We rejoiced and saw this as a very good sign. The next morning I received a call that I should come to the hospital as he was failing. I couldn't believe it at this point but began calling people as I got to the hospital as quickly as I could. Randy was still conscious and could only communicate with his eyes but they just weren't as bright. 

The family gathered and took turns going in and out. We weren't saying goodbye to him because it didn't seem right when he couldn't say it back. I kept telling him I loved him. About 6:30 we began to sing hymns but couldn't remember or think of the words. My precious niece came in and got us started. About 7:30 he closed his eyes for the last time but we continued to sing and pray until about 8:00. We began to disperse from his room and I told the doctors it was okay to turn the machine off. 

They had to wait for a particular doctor to pronounce him dead and that was quite early in the morning. We had all gone home by then. The next day we would begin preparations for his service. 

Saturday morning we began to send the word out to family and church. We made decisions for cremation and documented stories to share with the pastor. The were the home stories including that I had proposed to Randy. Very few people actually knew that. 

We contacted those that we wanted to be a part of the service, for those that would pray and those others that would tell stories about him. We decided on songs to sing to bring glory to God.

Our pastor later told me that this was the largest memorial service he could remember. For weeks I have been told what an impact the service made on those that were there. I didn't realize how full the auditorium was and how many didn't wait to talk to me. I thank God for the love and mercy he showed me that day and continues to show me each day since Randy went home. 

If you would like to come join us for services one Sunday we meet at 9919 McCree Road, Dallas, TX 75238. Hope to see you soon.

The last two days have been good days. I really enjoyed spending most of the day yesterday with Randy. I didn’t get to change his dressing but we just hung out.

Today in recreational therapy he made fudge in a baggy for Men’s Life Group tonight. Interesting but I’m not sure I want to taste it. I want them to continue teaching him to cook so he can take over in the kitchen when he gets home. I also took one of his old shirts to the hospital. Before he couldn’t keep it buttoned but today it just hung on him. He may get on that transplant list sooner than we think.

His exit wound is still draining so we are changing it every day. I did get to do it today. All by myself! Not too bad but there is plenty of room for improvement. Fortunately I have over a week to keep working on it. 

ETA to home is May 25. Yikes, I’m not ready for it yet. I still have some more work to do in the house to make sure he can get around okay with his cart. He seems to really have the hang of changing his power source from the Power Module to batteries. Tomorrow I take the test. I don’t think it will be a problem but it’s scary since it could be really life or death. Thank God, he is in control.

Saturday: I did some thinking over the events of the last two weeks. While Randy was in ICU I met 2 women at different times. They had each brought in their husband and had no one else with them. I was able to pray with one of them and give her comfort. The other did not want comfort. Each of them lost their husbands that week but it might have been too late when they arrived. I was saddened to learn that Jeanie’s husband, Johnny, had died and I never got to say goodbye to her. 

There was another man in the unit who had received an LVAD in March and had not been able to go home due to different infections. Another man with an LVAD was being treated for a fungal infection that was destroying his organs. I think the doctors may have wanted to get us in a different environment so we would not be discouraged by these events. Then as I was walking into the hospital on Saturday I encountered a man who received his LVAD 16 months ago. He was doing exceptionally well. His mother did not speak English but was encouraging to me in spite of it.

I went to the hospital in the afternoon to see Randy. He said for the first time ever his defibrillator went off, giving him a small shock. This might be a good thing as his heart starts working to some normalcy. The other chambers of the heart might actually begin to improve in function. 

Sunday: A lot has changed in the last two days. Randy has been eating breakfast, lunch and dinner. Yesterday he was out walking the halls but he didn’t get propositioned. I spent a few hours with him in the afternoon. Unfortunately they did put him back on a catheter but are working on getting the plumbing to work better.

Monday: I spent all day with Randy today. He has 4 different therapists – physical, occupational, recreational, and respiratory. Together they give him a busy schedule. Tomorrow the doctors will be having their conference to determine how well each patient is doing and then they will make rounds about 11:00. I’m planning on being there but do expect Randy will be in the hospital another week to 10 days. 

Today he played a game of chess for occupational therapy but I won’t tell you how quickly the game ended. I need to send our son, Joshua, over to give him a workout. In occupational therapy he had to roll a key shaped object with Velcro hooks on it up and down a board with Velcro loops on it. One would think this is very mundane, and it is, but will help him to develop those muscles that have atrophied for so long. The manual dexterity involved will help him to maneuver when connecting the pump drive line and battery leads to keep his pump running. He also walked 400 feet. 

Physical therapy has included riding a bicycle with his feet, his hands and feet, and then just his hands. This has brought about the first twinge of discomfort in his chest muscles but Tylenol took care of that. They are still working on his bladder so please pray that God will bring healing.

There has been a new tenderness between us also. Randy is grateful for all of the minute things I do for him each time I see him. I thank God for our relationship but even more for the time we will now have together.

I discovered when I came that Randy’s exit site was draining. This should not be happening and I let the LVAD team know. Evidently someone changed the dressing on Saturday and didn’t put the pigtail in the lead to avoid it being pulled. I did do the sterile dressing change today. It was interesting to say the least, but I did a good job. I didn’t puke at the oozy-gooey yucky part of the change and that was the hardest part.

In all of our encounters we continue to meet people from other cultures. We have had one nurse and nurse practitioner from Kenya. We have a nurse from the Philippines, doctors from India, more nurses from Nigeria and a respiratory therapist who spent his early years in Nicaragua. One of his technicians at St. Paul attends church at IBOC and we had a race to see who could draw a card faster to give to one of the other nurses. 

I want to reiterate that God’s orchestration has been so perfect in Randy’s hospitalization and surgery. We praise His name in all that he has done and arranged. I thank him that He prompted me not to wait too late to make Randy come in and that the right doctors were available at the right time. God is so good!

Sunday morning was sunny and bright. I made it to early service at Lake Highlands Church. The praise was amazing and I was very emotional. I was really tired but so glad that I made the effort. I was beginning to worry about Randy and was thinking of all the things I could do to stimulate him mentally make him want to wake up. In our International Ladies Life Group we began to do our usual thing. We shared what was going on in our lives and then began to pray. Each lady would take turn praying for another and then Martha Brown prayed for Randy. I truly believe when this woman prays, that God sits up and listens harder. She prayed for Randy and although it is sometimes hard to understand her words there was no doubt what she was saying.

I headed to the hospital thinking of all that had happened. I was going to turn on the TV or maybe music or a sermon and when I walked in his room he was sitting up! I was so startled and happy. Sitting was exhausting for him but such a change from laying in the bed for so long. I asked what the plan was and how soon he might get moved to a room. I talked with the charge nurse and she offered that if he was able to utilize the call button then she would feel more comfortable moving him. The other option was that someone would spend the night with him. 

I jumped on the opportunity and headed home to get ready. When I got home I had this idea for a painting collage using thoughts about My Love’s Heart. I gathered some pieces I had worked on previously and some paint leftover from a previous project. I was quite satisfied with the quick work but it is not quite finished. I had to go back in the house three times because I would get ready to leave and remember something else.

I finally made it back to the hospital and even got everything upstairs in one trip feeling much like a pack horse. Back in the room Randy was settling in but he was very thirsty. I called to see if he could get ice water with a sponge lollipop like he had in ICU. I was immediately told NO WATER. I had a feeling the question had not been relayed correctly so I found his nurse and asked her. She said yes and Randy was happy when I came in the room. They did tell me to shake the sponge out so he didn’t get too much water. It was funny because sometimes he would just about suck the sponge off the stick trying to get more water.

I made up the rollaway bed and then the room got crowded when a piece equipment was rolled in the room. They were taking a chest X-ray to make sure there was no fluid in his chest. People were coming in and out and always leaving the door open. It is a great room but no privacy curtain. I still can’t figure that out because Randy would be laying there trying to use the urinal in bed and the door wide open. Of course, I would get up and close it half-way. The man needs some dignity left after all he’s been through.

We started settling in for the night but there was a constant parade in and out, just like at any hospital, but this night had so much more in store for us. There was the alarm that would go off intermittently from the IV tree sitting next to him. Then Randy would try to hit the Nurse-call button and somehow would hit the System Test button on his LVAD controller. If you want to see some activity then just push this button in a heart unit. Immediately about 6 personnel came running into his room. Everything was checked out with the system and with Randy and the OK was done. Then it would start all over again. I did get about 1½ hours sleep at some point. I would also get up helping Randy when he needed it. The nurse came in and said she didn’t know what she would do without me. I was thinking she would do her job. 

Morning came and I was up helping Randy again when I sat on the bed. The bed alarm went off. I didn’t know there was such an alarm so of course nurses came running. Randy told me someone came in during the night and told him they wouldn’t “consider doing the swallow test for 3 more days”.  He was upset as he was so looking forward to drinking.  I got up and went and found his nurse again. The swallow test was done that day. He passed!

I had an appointment to make and took off to get there on time. That took a couple of hours and then I had the last day of school. It is a critique of work you have completed since the last critique and I had 5 pieces completed, including the one I did for Randy. It was a fun and successful semester. The class was great to work with and everyone had positive and some constructive feedback. I headed back to the hospital after picking up Zanda. 

I took two pieces to put in Randy’s room. The work based on My Love’s Heart was a hit with doctors and nurses. It made me feel good to share my feelings about Randy.  I did have to inform him that I would not be spending the night with him again. He understands because he knows my physical limitations but I miss him at home.  I told him goodnight as he settled into a clean bed. 

Tuesday morning was crisp and cool. I am loving this already. I headed to the ROC in Garland where I go to help with a sewing class in the mornings. I stopped by the church to check in with Julie and the rest of the staff. More prayer support was offered during the staff meeting.  It was still cool outside and I headed back to the hospital after grabbing lunch and running another errand. 

I got a call on the way that I would have training to do a “Sterile Dressing Change”. This will have to be done every three days until Randy gets a transplant. Unfortunately we are a little too late for the more compact units that are currently being designed and tested. These units will have internal batteries and that means no dressing changes.

Randy had ordered lunch as I arrived and he had backed chicken with mashed potatoes, ice cream, juice, tea, and frozen lemonade. This was his first solid meal in 9 days. I put his ice cream and lemonade in the refrigerator so he could savor them later. I hung around for a little while longer and headed home. I have a few things to do before he comes home, rest being the most important.

I woke up early on Wednesday. Surgery was scheduled for 1:00. We had dropped the van off at the shop the day before as it was overheating. I stopped at the shop to get the car charger and headed down Garland Road. I was dropping Zanda off for an appointment and was trying to decide between the route through my old neighborhood to show him around or to head down Gaston, a more direct route to the appointment. I opted for Gaston at the last minute and as soon as I did I got a call from the hospital saying they were going to take Randy downstairs at 11:00. It was then about 10:30 and I became frantic. I’m pretty sure I scared Zanda and must apologize to Julie for any abuses to her car. 

I made it to the hospital by 11:00 and Dr. Markham came by and wanted to turn down the Propofol to see if he would rouse up and talk about the surgery. That didn’t happen and was probably a foreshadowing of the last two days struggle to get him awake. About 11:30 the nurse came in and told me Dr. Meyer had just touched down at Love Field. 

It was almost 12:00 before they took him down and the family was mostly there. We chatted for a few minutes and headed for the 4th floor. After sitting there for a few minutes I called Julius to let him know where we were. It was decided that the family would go eat and meet on the 6th floor when we were done.

About 2:00 we finally called Julius and headed up. It was an interesting room where we met where the chairs were too short for the table. I felt like I was in an Edith Ann skit. (For those of you who don’t know what that is check out this link - http://www.youtube.com/watch?v=jJMKupYF14I)

Julius arrived and we gathered around the table. We began to examine each step of the training manual and the corresponding physical parts. We set off alarms, attached and unattached tubing and batteries, and discussed all the things that could go wrong. The most important part was what to do in case of emergency – check the patient and connections, call 911, and then call the LVAD pager number. I think we all got that one down. We laughed through a lot of it and each person asked questions of which the rest of us did not think. That helped unexpectedly. 

We finished about 5:30 and with an update from Katie found out that they were closing Randy up. WOW!! The afternoon had flown by and no stressful clockwatching had ensued. We headed back to the 4^th floor to wait for Dr. Meyer to come tell us how everything went. It went great!! No problems during surgery and he only got ½ liter of blood.

He was back to his room immediately as they don’t have a recovery area for this type of surgery. The nurses have all been wonderful. I would jump in and do what I can and was even asked if I was a nurse. It’s easy to help when the love of your life is laying there helpless. He didn’t respond to anything that day. 

Thursday morning I was up early again. I headed to the hospital thinking Randy would be awake and ready to run down the hall, at least that’s what I was hoping. Okay, maybe not running but at least sitting up. Not on Thursday. Every once in a while he would roll his eyes. I took a break in the middle of the day to go get the van and do some running around. 

I got back to the hospital around 2:00 and found out that all sedation had been stopped about 10:00. They were a little worried that he wasn’t waking up earlier. There was some more eye-rolling and a few times he even responded by trying to squeeze our hand. I left about 7:30 but Joseph, our son, and Joseph, our adopted son, were waiting to go see Randy. Our son was named for the other Joseph who has been a part of our family almost since he was born a month before our son Jeremy. Randy didn’t respond to them any better than he did for me. 

Friday morning I was up again early but not as early. Did some chores around the house and got ready. More errands to do and finally got to the hospital around 1:00. He was getting more alert so I would talk to him for awhile and occasionally swab his mouth that was so dry. All morning and even after I got there he kept sliding down in the bed. It was somewhat humorous because they would pull him up on the bed and within minutes he was back down with his stomach where his knees should be and his head where his bottom should be. 

He was becoming more and more alert and flashed the peace sign on command. He was biting the tubing and moving it around with his tongue to the point that the nurse thought he would spit it out. He persevered and out came the tubing but only when the respiratory therapist did it. One of the first things he asked for was water. I told him that probably wouldn’t happen but I would ask about ice chips. After discussion between nurse and doctor it was decided he could have some. It could have been the best of Blue Bell ice cream and he wouldn’t have wanted it more than those ice chips. 

Randy’s sister, Lana, and her husband George came by for quite a while. The specialist with the sonogram machine came to change his pick line which I am sure made him mad but he wasn’t fighting it too much. He still wasn’t complaining about pain. Of course we had to leave the room. We were barely back to see him when all the visitors had to leave because of an emergency. Lana and I went and roamed around the gift shop. Then we came back up and found out that there was another emergency and we still couldn’t go back. We found out that a man who had come in two nights ago had died. I remember sitting and talking with his friend when they first arrived. She had no one with her and was having a really hard time. 

I was finally able to get my laptop out of Randy’s room after the shift-change. Jeremy and Patricia, our son and his wife, were there to see him so I didn’t feel too bad about leaving. I was tired and Randy was going to have a good night sleeping. At least, that’s what I thought, since he was no longer restrained and no longer on the ventilator. So I kissed him goodnight again and came home to relax and gather my thoughts again.

The Beginning

I would like to tell you about my love’s heart but we will start decades ago. Twenty-one years ago my husband had a severe heart attack. He was going to drive home but his boss wouldn’t let him. Instead they called an ambulance and saved his live. There was one treatment option that might have made a difference if it had been offered early enough. (That treatment is Stem Cell Treatment if you have a loved one with heart damage that has not developed Congestive Heart Failure – CHF.) Many years later Randy did develop congestive heart failure and since his doctor did not think outside his box Randy was getting progressively worse. He did receive a pacemaker about 2003 and then 5 years later it was exchanged for a pacemaker/defribrillator. It helped for a while but his heart became enlarged and weaker and he persisted in Atrial Fibrillation or AFIB.

This January he continued to retain water and was losing energy until one Sunday he passed out. He didn’t just crumple to the floor but fell straight back and hit his head. Fortunately he was on the lawn of our church and within seconds two physicians were by his side. We took a day trip to the hospital and then followed up with his cardiologist of over a decade. Something the doctor said when we were there irritated me. He said “When Randy gets sick again we will explore more options.” I think Randy had become too familiar with his symptoms and the doctor had become too familiar with Randy.

That day I began researching the internet for other options. That’s when I discovered that he would not be a candidate for stem cell treatment. Before you get in an uproar I want you to know that we do not support embryonic stem cell research. These stem cells, which everyone has, would come from the patient.

The other option I found right under my nose and had been aware of it. That was the Cardio/Pulmonary Clinic at the University Of Texas Southwest Medical Center. I had been seeing billboards all over the city but it didn’t sink in until that day. I called the referral line and within days we had an appointment. We spent the next few days making sure that they had all the records from all his doctors. When we finally went to the CHF clinic we met with Dr. Mishkin, Mariah, and Brenda. It wasn’t just one doctor but a whole team. Randy wasn’t going to get better on-his-own, and the first suggestion of a Left Ventricle Assist Device was made. This is also called a heart pump or LVAD. We made an appointment and saw Dr. Markham. We continued to feel encouraged by encounters at UTSWMC and for the first time in years I felt hope.

We made the appointment for May 10 and began to clean up certain things at home like the garage. We had been remodeling and the house really was a mess. It still is but so much better. We saw Dr. Markham on April 23. Each day last week seemed to get longer and Randy was more tired and having more trouble breathing. We had planned on getting a mani/pedi together before he went in so I Thursday I suggested we get it done. He didn’t see the point since we had over a week to surgery date but finally conceded. Friday morning we were doing some things around the house and he could was having a hard time. I suggested he get out with Zanda and take care of a couple of things. While he was gone I sent a message to the clinic expressing my concerns over his current condition. After a few communications it was decided that he should go to the E.R. We were on our way about 4:30 and about midnight he was finally moved into a room.

I went home and for two days he talked and joked and visited but on Sunday afternoon they decided to move him to ICU so that he would have someone watching him closer. Early Monday morning after spending the night moving around from bed to chair he asked for help breathing. I got the call at 3:00 and was at the hospital by 4:00 a.m. He was sedated with versed, the happy drug for all delivering moms. It didn’t keep him sedated enough so he was put on the propofol drip. This knocked him out good but his heart rate would rise to around 150 and his BP would drop to around 70/50. Randy has had low blood pressure but that because his heart was so damaged it couldn’t do better than that. Before noon they made the decision to insert a balloon pump. It was a fairly simple procedure and didn’t take too long. I should have taken a picture of the entourage walking his bed down the hall along with all the equipment being transported. When they were done there was one more piece of equipment on it’s own set of wheels.

There were so many IV drips. It was something like looking at all the vacuum hoses under the hood of your car but so many more than that. They had to restrain his hands and right leg so that he wouldn’t pull out the balloon pump or the ventilator tubing. It then became a vicious cycle of trying to keep his BP up and his HR down. Besides that he started running a temp and they put him on antibiotics just to be sure that everything was covered. All of the cultures came back negative so it was never determined what the culprit was. About 4 hours after the balloon pump was inserted it kicked in and started performing the purpose for which it was intended. Monday night came and things seemed to settle down. It was decided that the LVAD would be implanted on Wednesday but I wasn’t sure what time.

On Tuesday there began a parade of doctors and nurse practitioners and research fellows bringing papers to sign for permissions. The anesthesiologist came in and explained that there would be a team of 3 that would be watching monitoring everything that could possible go wrong. The nurse practitioners, Katie & Julius, came and discussed the training that would be required before Randy could go home. We talked about who might be candidates for training. I decided everyone that he might be around would have to learn. I didn’t want to think about not being around him and something happen with no one trained.

As I was sending out an email to find out when everyone would be available and who would consider training it occurred to me that we would all be together on Wednesday during the training. What better time than this? So I called Katie and it was arranged. Julius would determine where the training would be and we would show up. I finally went home to do a few things and get ready for the BIG DAY!