CHANGE OF SCENERY

CAN YOU BELIEVE IT?!!!!!!!!!!!!!!?

Room 12, in CSICU, on 6W, is no longer occupied by Ken and Bert. It was just like any other moving experience --where did all of this stuff come from. Ken sat in his chair as I gathered up the months of accumulation and piled it on his bed. We are still on 6W but it is now room 20 in the Telemetry Unit. My route to the sixth floor is still the same; however, instead of stopping to be let in the main double doors of CSICU, I take a few more steps down the hall and walk right into our new "pad". For the past three months, every time I walked this portion of the sixth floor hall, the view ends with this room. A couple of times I even knocked on the door to visit the patient who occupied it. John - the man who was waiting on his by-pass surgery the day Ken was receiving his new heart. Being in this room serves to remind me how God has crossed our paths with so many who have touched our lives deeply. When I walk out of this room and turn my head to the right, I can see Ken's old room through the windows of the CSICU closed back doors. Walking past the CSICU reminds me how far God has brought us on this journey for a new heart.

Moving day was Friday. It started on Tuesday waiting for a room to become available and then we had to wait because of a minor problem with the new fistula on Wednesday. On Thursday afternoon dialysis was completed and the fistual was fine, bringing us back to waiting for a room on Friday. As always, when dealing with getting something done in the hospital, it is hurry up and wait. When the call to "move um out" finally came late afternoon it was a circus. Instead of going out the back doors that I can see when I walk out of Ken's new room, the two nurses took us all the way through the unit to the main doors. Immi led the way announcing "Mr. Cooper is leaving us, everyone tell him bye". Then we were out the main doors, took a left and wahl-la, what a trip!! All of the subsequent trips to get his bed as well as three plus volumes of his medical records were done through the back doors - guess they were tired from the initial long hard trip.

A short time later at shift change, one of the night time techs and two of the nurses came over when they heard we had moved. Ken had been in the chair all day and because we were waiting for a different bed to be delivered to his room (long story) he still was at 9:00. When the bed was finally situated and hands were gathered for transferring, the group included the three from CSICU who had already been here once. I asked them if they had come to tuck him in for the night. Ryan, the tech, came by several times that night to check on Ken. Every night he has worked since, he stops by on his way to clock in as well as several times throughout his shift just to make sure everything is ok. Every day someone has come by to visit and make sure we are "behaving". The room is nice - but we miss our family behind those closed double doors.

Amazing what a difference there can be just eight rooms down the hall. I actually have a chair that will make out into a bed as well as drawers and some shelves where I can put away personal items. We have a view and Ken can see it. In room 12 the bed was not close to the windows, but even if it had been he would have been looking at the windows of rooms from another section of the hospital - up close and personal. It would have been great to of had the comforts of this room the past three months, especially for me. Oh, wait I forgot, we are at UMMC not the Hilton I can see a few streets over. Perhaps it is only fitting that at this point in the journey our view has expanded. Yes, I do believe I can see an area of sky that has planes heading for Tennessee.

It is possible our stay here in telemetry will be very short. There is talk of getting us back home very soon. Details are being worked out for transportation and for the facility Ken will be transferred to. It is very exciting but at the same time a little scary. We love Chris, the physical therapist, and know her and trust her to do everything possible to get Ken back to being able to take care of himself and walk. There are lots of things I need to take care of including the apartment. We are suppose to give a 30 day notice, I will just have to see.

The prayer request include working out all of the details, transportation, new facility, apartment and packing up . Also, Ken needs to stay well. He is doing fairly well. He has had a cough that is both irritating physically as well as mentally. It is tiring him out and that sometimes affects how he eats and rest. It is now Tuesday morning and I have been here all night. He wanted me to stay because the last couple of nights he has gotten startled and panicky not knowing where he is when he wakes up. I got a couple of hours sleep but I am really tired and plan to go home and rest a little, while Ken is getting dialysis this morning. Please pray I will just continue to rest in Christ as He works out the details. I hope next time I can give you some details about finding those Ruby Red Slippers.

I hope you had a relaxing Memorial Day Weekend and have a GREAT MONDAY - I mean TUESDAY!!! Sometimes those Tuesdays are like having two Mondays, YOU KNOW WHAT I MEAN!!! God Bless You.

PRAISE THE LORD - PROGRESS CONTINUES

Ken continues to improve. Monday, he had the surgery to place the AV Fistula in his upper right arm. Yesterday afternoon he received his first dialysis with that access and it went well. His arm is a little painful but hopefully that won't last long and the incisions will heal quickly. The fistula is under the skin and accessed with needles, eliminating outside lines that could be easily infected. Ken is scheduled for another dialysis this morning. Some nurses have said that from their experience his kidneys are not going to come back - maybe they won't - but I recall similar comments being made after the transplant about his heart, while he was on the by-pass machine. The "GREAT PHYSICIAN" had a different outcome then and we'll see what He reveals on this situation as well.

Even though Ken had been given the green light to eat through an assessment by speech therapy, it has not been easy. He was having trouble swallowing because of soreness and burning in his throat over the last few weeks. This weekend while we were talking he mentioned he was having some fears about choking. He has been able to talk to several different staff members from different areas that helped him understand what was going on physically as well as psychologically. Last night he was able to eat about half of what was on his plate.

Progress is moving forward - almost don't want to say that out loud!!!! As it stands right now, if there is a bed available TODAY on the Telemetry Unit (which is literally just outside of CSICU) Ken is being kicked out of the room he has been in since February 22nd. The words I hear all of the time now is "I Love You Mr. Cooper - But I'm Tired of Looking at You!"
Going through the CSICU doors is one step closer to going through the UMMC Front Doors and back to TENNESSEE!!

We have been told that if Ken has to go back into CSICU it is not uncommon and we should not be surprised, but just remember we are still going in the right direction. The transplant nurses will be the ones in charge of Ken's care once he moves. Even though there is a sense of security where we are now, and a little apprehension about leaving - we are definitely ready for the next leg of this journey.

Thank you for praying us to this point - GOD has blessed us through you time and time again.
The immediate prayer request are: 1) Ken's body would continue to heal. He still has quite a few sutures in areas that have been slow to heal. 2) Ken would be free of infections. 3) The lack of rejection toward the new heart would continue. 4) Ken's kidneys would start to function. 5) Ken's body would respond to the increased physical rehab. 6) I would be able to maintain physical and mental strength as we move to the next level. Even though I am at the hospital and help daily now - it is about to increase -he will not be getting the one on one medical attention he does now.
I will try and update soon. As always, thank you for the support you offer us in so many ways. GOD BLESS YOU

A GLORIOUS WEEKEND

What a great weekend it was here in Baltimore. My arms feel a little empty but I am so thankful for the time they were cuddling 19 pounds of joy. I don't have to tell you, if you have looked at "Jack's Place", what a beautiful baby he is, but when those blue eyes are looking directly at you and a smile comes to his face your heart just melts. I am sure his cheeks are not as full as they were when he arrived in Baltimore, because I could not stop kissing on them all weekend. It was not all for me - I was kissing him for his Pops, my Mom and Dad as well as his Auntie Hannah.

Ken is no longer on the continuing dialysis. After I posted the entry Friday, he received his first regular three hour treatment. As I have said many times, things can change so fast in this hospital room it leaves your head spinning. Friday evening, Ken had fever again!! When he is still on an antibiotic and that happens, you can bet your bottom dollar, action is about to take place. Saturday they added another antibiotic took the lines out of his chest and put them back in his groin. I was upset about that decision, but Ken was just fine with it. He kept telling me, "we gotta do what we gotta do". I'm like, excuse me, where is my husband - but Praise the Lord that was his attitude.

While the lines were being put in and taken out, I went and sat on the fifth floor. It is an open area and from the sixth floor you can see down there. The nurse motioned I could come back up, and when I got to the top of the stairs I could see Sarah waiting for me at the CSICU doors. We walked back to his room talking all the way. Rounding the corner I could see red flowers on the bedside tray and was thinking, "why are there flowers in there, he can't have flowers in his room" (not allowed on this unit). Arriving at the door I could see Ken and several nurses grinning from ear to ear, and he had that little twinkle in his eyes that comes from knowing he got me. A dozen red roses, he said were for me, Happy Mother's Day! I asked him when he went shopping. "The night Chris (P.T.) took you to her house to eat and then to the grocery store", he said. The nurses laughed, we laughed - IT WAS GREAT!!!

He had to have dialysis again so that meant staying in the bed. Josh and Melanie went in to see Ken while 'I MADE MYSELF WATCH JACK FOR THEM'. Ken was so excited to see them. He talked and talked and talked...............definitely "Mr. Chatty". It was like he thought he might never get to talk again, and so he was nonstop. Before they came out of his room, Ken was getting a little tired so they kept telling him to just rest for awhile and they would come back in later. Josh said he took off the valve Ken uses for talking (he can talk without it but it is harder) thinking he would possibly be quiet and rest. NO! - he started talking to the person giving him the dialysis treatment - OH WELL! - you just can't keep a GOOD MAN SILENT!!! Once they had completed the dialysis Josh and I went back in his room and found him really tired. With dialysis two days in a row, all the excitement of seeing the kids, and lots and lots of talking - who wouldn't be tired. Josh went back to the apartment with Melanie and Jack while I stayed to get Ken settled for the night before I left.

Sunday, when I finally got to Ken's room (takes longer to get ready when you are holding and kissing the grandbaby, taking pictures of the grandbaby getting a bath, taking pictures of the grandbaby in his outfit to go see Pops, and then there is more kissing before I can walk out the door) he was so tired. We had hoped he would be able to go out of the unit and see Jack sometime during the day but he just couldn't come up with the strength. We told him we would try again tomorrow (Monday) and that he should get some rest and he could still visit with Josh and Melanie. When someone would ask or mention about him not seeing Jack, Ken would tell them he was just so glad to see his son and Melanie (his kids). Poor me, spending more time with Jack while the kids were in the room with Ken. I stayed until everything was situated for the night while the kids went to enjoy the weather and then back to the apartment.

Monday morning, Ken was already up and in the chair when I got to his room. Josh and Melanie were on their way with Jack and we were going to get the two together. Jack was going to demonstrate how to fish with a mechanical toy fish pond, and then give it to his Pops so he could practice fishing. Ken was scheduled for dialysis at 1:00, so we had time to make this happen - not when the machines come rolling in at 11:00. They were ahead of schedule - Ken was next. Back to bed - dialysis - tired - not happening. All day everyone was talking about Jack and how they saw him and asking if Ken had seen him yet. One of the staff and the charge nurse worked it out for Josh and Melanie to bring Jack in the back door, which is just a few doors down from Ken's room. From his bed, Pops was able to see his grandson through the window, and maybe Jack saw Pops, it was hard to tell.

Tuesday, the kids had a very early flight and it was extremely quiet while I was getting ready. When I got to the hospital, Ken was so out of it I could hardly get him to open his eyes and when he did they closed right back. He could not even complete a sentence. All of his numbers looked good - still not sure what was going on. Ken had dialysis again and I was a little surprised he did so well with his blood pressure. It was late afternoon before he really looked alert. On Sunday the doctor who had been asked to look at doing the fistula came by. The surgery was scheduled for Wednesday. By the time I got to the hospital this morning it had been canceled. No one seems to know why, but as of now it is scheduled for tomorrow, Thursday. This morning Ken's physical therapy included sitting on the edge of the bed with his feet on the floor for the FIRST time. After sitting there for about twenty minutes he was moved over to his chair where he stayed for most of the afternoon. The O.T. came to work with him as well and that also included a FIRST. Brushing his teeth with the help of a device to hold his tooth brush allowed him to feel like he had finally completed a task. He saw his progress. What a great day.

Ken is still having some difficulty eating because his throat is so sore. Although he has been approved to eat, swallowing does not happen without some effort. It also hurts and burns when he swallows anything dry or with much texture. Those of you who have eaten with Ken, know he likes his food spicy - not right now. He has been drinking those nutritional type drinks mixed with ice cream, or eating yogurt and some soup. He is willing to try whatever they bring on his tray if it is soft without much texture but even then it is not a lot he takes in. To make sure he is nourished they are supplementing with tube feeds at night. This phase of recovery will just take time for healing as well. After all this time up here, I find myself still taking so many things for granted. Unless I have a sore throat I never give it a second thought about eating and drinking. I just reach for the toothpaste and toothbrush and take care of that task without thinking about what was required of my body to accomplish that. Yes, I have had sore muscles, or injuries that have caused me difficulty in maneuvering and it is frustrating at the time. I wish it did not take being in a hospital setting with all its trials and sufferings, not just Ken's, to realize and be reminded daily what a gift life is and how blessed I truly am. Every move we make is possible because of God's design of the human body. Life gets hectic, I know, with our schedules and all that has to be done in a short amount of time. Please don't let your life, as you know it, come to a stop before you Thank God and Praise God for the gift of life you have in the body He created.

LOOK AT YOU!!!! - OH!-YOU'RE TALKING

Let me count how many times I have heard those two statements the last couple of days -- On second thought, I lost count. I don't know what Chris, the physical therapist did or said to Ken Tuesday afternoon, but the man I found here in room 12 that afternoon HAS STAYED!!!!!!! Let's do a quick recap: Sunday - went on first outing to atrium and made a contract after being extremely agitated; Monday - fever caused by blood infection and so very sick; Tuesday AM - asleep so hard would hardly open eyes; Tuesday PM - NEW MAN!!!!! sitting up in bed with glasses on and talking. NOW..............!!!!

WEDNESDAY, when I left you, I was trying to take care of my wobbly legs by resting at the apartment. I never did go back to sleep but it was nice to enjoy my cup of morning tea sitting in the recliner. I did a little cleaning and straighting and then I got ready to head over to the hospital when the phone rang. I answered and heard Ken's nurse saying someone wants to talk to you. Yes, it was Ken and he began telling me about being outside - YES, OUTSIDE-OUTSIDE, with the breeze blowing in his face, and how good the sun felt and how much fun it was to watch the people. His nurse, Dan, and one of the techs took him out and the three of them were enjoying the heck out of it. They only went back inside, when they did, because the oxygen was running low; and I just missed it by minutes. What a glow!!! What a smile!!! What excitement in the voice!!! when I got to his room. Everyone I talked to was so excited about his turn around and how he was all of a sudden "Mr. Chatty".

The weekends are very quiet around here, so on Sunday we had a minimal number of staff in the halls. Weekdays, you can hardly get down the hall, at times, for all of the doctors and other hospital staff coming and going. Ken said he really had a parade Wednesday with everyone clapping and cheering him on. All of the nurses work both day and night shifts, and with schedules and days off changing weekly as well as working on the other side of the unit it can be a week or more before some of the staff will see you again. That is why there is always someone coming in saying I heard you were talking, or I heard you went outside, or................ In the beginning when Ken was on the heart/lung machine, there had to be a perfusionist taking care of that machine as long as he was on it. Two of the ones who watched Ken were back in the unit yesterday, and both came by when they heard he was still here. They were so thrilled with how great he was doing. Both said this was such a rare treat since they are not around to see this end of the recovery, and so it was nice to see what had happened after their services were no longer needed for Ken.

Yesterday, was cloudy and gloomy, and holding a chance for showers all day. I got over to the hospital early and was ready to see what this day had in store. Ken was in the bed but waiting for the troops to gather so he could get into his chair. He was still on the trach collar and looking good!! Shortly after he was in the chair I was puttering around getting him situated with my back to the door. When I raised up and turned around -SURPRISE!!! - I knew those people coming towards the door. I could hardly believe my eyes and asked Ken if he knew who that was coming in. Sure, it was Roland and Pauline (Ken's cousin and his wife from Texas). I pulled up some chairs around Ken's throne and we had a great visit. Six months ago they had planned a vacation, not to Baltimore, but to the surrounding states. They changed up their route in going between two of their locations so they could include a stop here. WOW!! Ken was getting tired and ready to go back to bed so Roland and Pauline took me to lunch and then we took the "scenic route" to Wal-Mart. What a great time and blessing they provided us.

While we were in the car Ken's nurse called to tell me he wanted her to let me know that he had passed his swallowing evaluation. When I got back up to the hospital, the first thing I heard was 'I ate supper'. His food does not have to be pureed this time around, but it does have to be small and soft enough to chew and easy to swallow. He also is getting, for the first time to drink water and coffee. Talk about feeling ALIVE! So far there are two nurses that have promised to bring him something homemade to eat. I say so far because you can count on there being more. I stayed up there until 10:30 getting him situated for the night. He was really tired and had been coughing quite a bit, so they put him back on the vent to let him rest overnight. WHAT A GREAT DAY - WHAT A GREAT TWO AND HALF DAYS IT HAD BEEN!!!!!!!!!!!!

I hope you all have a great weekend and Mother's Day!! I am pretty sure you will find no new entries until Tuesday - my hands are going to be busy playing with that grandson of ours. I would ask that you pray for both Ken and Jack to be healthy enough to see each other. Jack has had the croup and Ken has to be able to go off the unit to see him. Please pray that Josh, Mel and Jack have a safe flight tonight. Can you hear the excitement in my fingers! I can hardly wait!!!!!!!

What a blessing you are to us!!! I hope you can give your mother a hug this Sunday. If you cannot hug your own mother just hug someone. You never know, that act may just make their day. We love you all -- God bless you!

A GLIMPSE OF TENNESSEE

When I left you Monday morning, Ken had a temperature and things were not looking good at all. He was in and out of reality all day and every time his body was touched he grimaced in pain. His legs and feet kept cramping and he looked as though he could start screaming at any moment. I sat next to his bed all day just waiting to do whatever he needed - pile on the blankets, take off the blankets, rub his face with a cold rag, make sure the fan was on him, make sure the bed was on rotate (the mattress will rise on one side with air, causing the mattress to tilt, then it will go back to the middle, then tilt to the other side and then back towards the other side), rub his legs and feet, pile on the blankets............................................on and on. He was not on dialysis yesterday and some of his levels were up which could have caused the cramping. I did not leave the hospital until after 10:00 Monday night, exhausted. I set the alarm for 6:00 am knowing I needed to get to the hospital around 7:00 am. When I left that night, Ken was on the schedule for 8:00 Tuesday morning to go have a line put in for IVs.

I tell you all that for this reason ----so you know how fast things can change!! Ken was sleeping so hard when I got to his room yesterday we could hardly get him to open his eyes. Dr. M came into the room talking to one of the nurse practitioners and asking about the need for the IV line. When he left the plan was: the dialysis would be restarted and they would run the IVs through that set-up for a few days instead of a new line. I could have stayed in BED. Since Ken was sleeping so well I decided to go run some errands.

After several miles of walking I headed back up to the hospital. Walking down the hall communicating to some of the staff, I stopped and talked to the physical therapist when I saw her. Chris had been in to visit with Ken and work him out some. She said they had a good talk and that he was awake right now so I headed on down to his room.

WAIT A MINUTE -- I MUST HAVE THE WRONG ROOM --- NO, IT'S THE RIGHT ROOM- JUST DOESN'T LOOK LIKE THE SAME MAN I LEFT EARLIER!!!!!!!!!!!!

The man I left was so out of it I don't even think he heard me say I'll be back. The man I saw now was sitting up in bed with his glasses on looking like a million bucks!! He was on the trach collar and talking. There are many of the staff that had still not heard his voice and they were all just smiling and so happy. He was "Mr. Chatty"!!! I sat by his bed again, but now it was an occasional suctioning out his mouth. I read some e-mails to him, we talked to the staff who would stop by to visit and we just visited and shared with each other. At about 6:50, Ken asked me if we going to watch Jeopardy. Many nights, in an effort to get him to become involved in something, I would turn on the TV and almost make him watch it. As I was trying to get some things situated he was watching the clock and informed me I had to turn on the TV if we were going to watch. I did not go home until after 10:00 last night, but this time it was because I was watching TV and visiting with the same man I was taking care of the night before.

The diagnosis for why Ken was so sick on Monday -another blood infection. He is responding to the antibiotics and the doctors who take care of infections are still trying to find out the cause. Sunday, I'm sure the infection was causing him to be so tired and agitated although we didn't know it was there yet. They will continue to treat and look for the source of infection, but we do know the lines used for dialysis are clean. The dialysis is now running to filter as well as remove fluid and he is off the IV for keeping his blood pressure up. PRAISE GOD!!!

I was talking to a friend yesterday and told her the last couple of days have reminded me of the parachute ride. You are strapped onto a seat that is slowly raised up into the air. You are enjoying the scenery all the way up (Sunday), then it comes to a stop. The next thing you know you are plummeting back to the ground (Monday) when suddenly you feel a jerk and you slowly glide the rest of the way down (Tuesday). I use to love that ride. I could see so far out from where I was as the operator kept taking me to the top, but when the operator flipped the switch and dropped me it was like my breath was just taken away. When my feet were back on the ground I felt so exhilarated but my legs were a little wobbly.

I bet you think I love amusement parks as much as I use the rides to share with you what this journey has been like. Before Josh was born I could ride anything out there, but ever since I had him I cannot even swing without getting motion sickness. Perhaps my body is feeling the effects of these rides I have been on lately, because this morning I am tired I can hardly keep my eyes open. I called Ken's nurse to see how he was - waiting for Chris to get him in the chair and still bright eyed and talking - and asked him to let Ken know I would be up there a little later. Perhaps I'm exhilarated from the events of the last couple of days but my legs are a little wobbly right now. I need to get some rest before we have company this weekend. JACK is bringing his mom and dad to see me for Mother's Day - what a thoughtful grandson!!!! We are just praying Ken will be up for another field trip to the atrium and a play date with Jack.

Thank you for holding us up when we are tired and wobbly and for celebrating with us when we see and experience all that God is doing. I could see Tennessee on Sunday when I was at the top of the ride!!!