GOD'S PERFECT TIMING

I was talking to someone the other day about the blog and my "getting or not getting" it updated. The funny thing is I have five drafts that have not been posted because before I could get them finished things had already changed completely. I am praying that is not the case with this one!!
The title could have been:

I'LL BE HOME FOR CHRISTMAS!!!!

That's right ----Ken will be home for Christmas. We are praising the Lord!!! I had scheduled an appointment today on my lunch hour (12:00 to 1:00), to go tour the skilled nursing facility we have been trying to get him into. They have not had a private room available which is what he needed in order to cut down on the risk of infection. It was about 11:15 when I talked to Ken's cardiologist: She says, "I think I have some very exciting news - We are working everything out for Ken to come home on MONDAY" [Pick me up off the floor] REALLY!! All of the details are being worked out for equipment, nursing care, physical therapy and dialysis. I'll tell you more about this part of the story at a later time but, can you say "PRAISE THE LORD"!!!

It is perfect timing - as it always is with God. Hannah is flying in tomorrow night (Friday) for Christmas and will be here until the 28th. She will be here to help her Dad get through this transition. What a burden that takes off my shoulders. Josh, Hannah and myself are suppose to go to the hospital Saturday and learn about his medications, taking blood sugar and giving insulin shots, and what to watch for in knowing if he needs to go to the emergency room. I am so thankful that both of them will be there since I am not sure my head will have stopped spinning yet.

Yesterday, Ken was very down and emotional. He has been ready for a change and it had not happened and he was getting discouraged. I went up to the hospital last night and we talked once again about how God had taken care of us this entire year and we knew He would continue, so we just had to keep trusting. When I called him today after I had gotten the news - He said he didn't want to call me because he didn't know if he had really heard everything right! He still gets confused about things - but he HEARD RIGHT on this one. I asked if he was OK with this - (I can just hear you all saying , "well, duh!") - but he had not been ready to come home before, not even mentally. It will be a big adjustment for him but I believe he is now ready to take that task on.

We are still traveling this long and winding road - the scenery is just changing. Please don't think you can stop praying now - you have held us up all this time - and we still need you!! I can't wait to tell you about him getting home - I promise it will be soon!!

WHERE IN THE WORLD IS TIN MAN

STILL AT BAPTIST HOSPITAL!! The last 5 weeks have been hard work for Ken. I have to get back to updating you more often - it would be much easier for me - so much happens I don't know where to start. Ken has worked hard in rehab. I hope to get some pictures posted soon. There were a couple of weeks we wondered if the insurance was going to let him stay in rehab where he was. Their answer was yes - but at this time he is back on the fifth floor dealing with a small setback.

Ken did not feel good last week. It was different than just being tired from three hours of PT and OT everyday and dialysis on top of that M-W-F. The doctor ordered a chest x-ray to see if pneumonia was in the picture - not the culprit. He had an echo on Thursday which lead to a heart biopsy on Friday morning which lead to a floor change so he could be treated for rejection. YES, after all this time - but that is not unusual. We were told it was one of those "good news -bad news" type finds. Bad news "rejection" but they are treating that with increased steroids. Good news "Ken's body is getting stronger". Strange isn't it? I'll try to explain.

I continue to find out more and more just how sick Ken has been since February 22nd. The fact that his body now recognizes something different shows that he is getting better. He was so sick that his body didn't know to fight before. UNBELIEVABLE - I am still so amazed at God's creation. The full results of the biopsy will not be known until tomorrow. Those results will determine how long this course of treatment will last. Tonight he will receive his third IV. It is possible that could be all that is needed or he may require seven more days. Yesterday he received a unit of blood as well, so he should be a little perkier today.

Ken and I have both been a little discouraged - he has been making such great progress and getting closer to coming home. It remains to be seen what this will do to his physical rehabbing but also where that rehabbing will take place (don't know it rehab and the insurance will allow him to go back). We have continued to see God working out details and we know He will take care of the steps ahead. At times you just grow weary - in all areas - MIND, BODY, SPIRIT. One very important life lesson I have been learning through all this -God is in the present and that is where I can find Him. When I try to focus further down the road that is when I become anxious and fearful. Jesus calls me to the present, where He is, then He will walk with me down that road and through the unknown.

This coming Thursday is Thanksgiving and we have so much to be thankful for. The 12th of November, Ken celebrated another birthday, and it is only by the GRACE OF GOD we were able to put another candle on the cake. We are thankful for the many physicians, nurses, techs and therapists who have used their gifts to get Ken to this point. Their hard work and encouragement in both words and deeds have been tremendous. Our family - Ken, Bert, Hannah, Josh, Melanie and Jack are so very thankful to all of you who have held us up from the very beginning of this journey.

WE ARE SO BLESSED AND SO HUMBLED BY THE GENEROUS OUTPOURING OF YOUR LOVE IN SO MANY WAYS.

REHAB UPDATE

First of all, I want to apologize for asking you to continue on this journey with us and then not keep you updated. I think about it -- but that seems to be as far as I get. The funny thing is, I had almost completed an update on September 17th and realized today I never got it posted. In this day and time we are all busy and struggling with issues that affect our lives - thank you for still taking the time to keep us in your thoughts and prayers.

Well, as you know, it has been four weeks since the last update. That means four weeks in rehab has come and gone. Ken is getting stronger and is making progress, it is just not as much as we were thinking it would be. Every Wednesday the rehab team has met to discuss Ken's case and then the social worker has called to let me know what is going on. For the past several weeks there has been concern the insurance provider was not going to allow Ken to remain there. In this type of rehab facility there is usually more visible evidence of progress taking place, and although Ken is progressing, he still requires maximum assistance on many things. If the insurance allows him to continue, the fact remains there are only about thirty days left that will be covered. My understanding is, when we reach that point, he will either come home or it becomes "private pay" at a nursing/rehab facility.

My conversation with the social worker yesterday left me a little discouraged. Although progress is being made, the next 30 days are not likely to result in any major changes. That means he will still require 24/7 care with a large amount of hands on assistance. There are decisions that need to be made soon regarding his care so the details can be worked out. As we all know - TIME WILL FLY BY.

Ken remains on oxygen at this time and continues to receive dialysis on the M-W-F afternoon schedule. He continues to get three hours of combined PT and OT five mornings a week and shorter sessions on the weekends. Ken's lack of endurance is one concern the team continues to bring up. I was able to see the short session last Sunday and was pleased with what he was able to do - he has come so far. This journey continues one step at a time, day-by-day and you just never know what the next step or the next day will bring - but then that's how life is for everyone.

We both know God will walk us over this next bridge just as He has faithfully done all along. Please pray both of us would have the wisdom to make these decisions as well as strength of body and mind to endure these next weeks. I will update again soon - there is much on my heart I would like to share with you. We feel so blessed to have you apart of our lives.

GOD BLESS YOU

NEEDS FOR MOVING DAY

Ken and I thought this day was never going to come. Moving to the REHAB Floor!! Since coming back to Nashville in June we have been waiting for the word to be given that Ken was accepted to the rehab facility. The move is only one floor up in the hospital - but - IT IS A HUGE MOVE. This is where the hard physical work for Ken begins. It is going to take a great amount of determination on his part. He will have dialysis this morning and then he will be going to his new "digs" - (room). In rehab he will have three hours of physical and occupational therapy a day. I know that does not sound like much for those of us on the side lines; however, it will be.

PLEASE PRAY FOR HIS STRENGTH AND DETERMINATION TODAY AS WELL AS PEACE AS HE MAKES THIS, ANOTHER, TRANSITION ON THE LONG AND WINDING ROAD!!!

DAY COUNTING?

I know you all think I have stopped blogging - not so our faithful prayer warriors. I need a voice activated computer that could be operated in the car while driving. If it could just read my mind that would be even better - sometimes I am just too tired to even formulate a sentence that makes sense. It has become even clearer to me that we were exactly where we needed to be for all of those months in Baltimore. Ken is still progressing in a forward direction and for that we are extremely grateful. There have been some days in the last several weeks that I wasn't convinced of that though. He continues to remain in the hospital and not in a rehab facility and there are times I wonder if he is getting stronger at all. Occupational and physical therapy come every morning to work with him and then he still has dialysis on Monday, Wednesday and Friday afternoons. Since I was off work on Labor Day I had the opportunity to go sit in on Ken's therapy sessions. It was good to see how they were working with him, I just don't understand why his progress is so slow.

When I last shared with you, Hannah was to soon be back in Nashville for a visit before she had to return to work. Although Ken seemed very tired that week, they were able to visit quite a bit. She did not miss a day going to the hospital so it was "quantity" as well as "quality" time. She even prepared a chart that listed the goals she and her dad put together. The top goal is still to take Jack fishing, well that is after GOING HOME. Ken had a chance to see the teacher coming out in Hannah first hand - she awarded him two gold stars for accomplishments in his therapy. She even left me some stars to award for other accomplishments - I thought motivating himself 65 feet in the wheelchair was a great one to be added. I went and bought some weight training gloves that have open fingers and a padded palm to help him grasp the wheels and protect his hands. He looks pretty cool to me with those leather gloves and hospital gown racing down the hallway - OK, maybe not racing, but to those of us watching it was exciting.

Wii- do you know what that is? GREAT FUN!! For a few of you who may not know, Wii is a gaming console that is used to experience interactive games. I had heard that the Wii was being used in different facilities to promote some physical activity as well as interaction with others. I was wondering if it might be good for Ken - I wanted to try it before buying. Our gaming guru, Riley, set me up with his for the weekend. This was the same weekend Hannah was here and Josh, Melanie and Jack came to visit. Talk about a crazy hospital room - it was definitely filled with laughter. We were bowling, playing tennis and baseball, golfing and even boxing. Ken played a little but mostly he and Jack just watched, it was quite a sight. We had a great time!!

It seemed like Hannah had to leave all to soon - that week just flew by. There is a church sign I pass every day on my way to work, and for a while it read, "Don't count the days -- Make each day count". I have pondered that thought a lot. Counting how many days until...........is not where my counting lies. Rather it is looking back and counting how many days it has been since.............. Especially lately. Did you know that from February 22nd to September 6th is 198 days. If you you tack on another 51 days, that takes you back to January 2nd, when I had to call for the ambulance and that puts the total at 249 days. Whether it is counting since.... or until......I am not living in the present. How can I make the day count if I am not in it? Lately, I have been so frustrated and stressed out. I find myself getting extreme road rage when I am driving from one place to another. I just want it to all be over! For whatever reason, (most likely, taking my eyes off the One who knows the way, and feeling sorry for myself) I have lost sight of taking one step at a time and being content with God's time table. The only reason I should be looking back is to remember how faithful God has been and to give Him honor and praise - HE IS WORTHY!!!!!

Please pray for me! This state I find myself in lately is not good on me mentally or physically. Would you pray for Ken's mental and physical health as well. He wants to come home so much. Although I feel like I am tied to the hospital, I am still able to have a change in my routine and scenery. Ken has been very patient with his situation but he gets discouraged. As I said earlier, we are very grateful that he continues to progress. We are grateful that each biopsy continues to have a good report and shows no signs of rejection. The steroid dosage has been reduced each time and that is definitely something to be grateful for. He is scheduled Tuesday morning for another biopsy and we are praying that the same positive results will be the word. AS ALWAYS, WE ARE GRATEFUL FOR YOU AND YOUR EFFORTS TO GET US THROUGH THIS PART OF OUR JOURNEY!!

WE'RE STILL HERE - JUST SLOW!!

AUGUST 10, 2008 - CRAZY!! What a year. I recall wondering and writing at one point in this journey about why weekends back in the "real world" went so fast. Guess what - I'VE RETURNED to the "real world". I have been back at work for two and half weeks and still working on getting back in some kind of routine with everything else. Ken's prospective of time is still the same -S L O W.............. He is working hard with PT and OT and definitely getting better, just not as fast as he would like.

This past week, Ken and I agreed I would go to the hospital on Tuesday and Thursday nights and then on Saturday and Sunday. He is still receiving dialysis on M-W-F and his scheduled time is 1:00. That does not mean 1:00 is when they get started or even that 1:00 is when he gets picked up to go; therefore, he does not get back to his room before 6:00 or 7:00. He is usually tired after his treatment, so by the time he eats and the nurses come and do their evening assessment he is pretty much ready to go to sleep. That gives me those nights to try and get something done at the house. Sounds like a good plan - I'm sure you all know how it is when you have a plan though!

This week the physical therapist brought in the tilt table. If you recall, that is the device that is raised by degrees so that the patient is in a more up right position. They are trying to build up his tolerance to his weight being on his legs and feet as well as strengthening the leg muscles. When they stand Ken up with the lift that straps around him, he is not able to stay up more than a few seconds. The therapist mentioned bringing in a wheelchair so Ken could start working on transferring himself into it. That would be great! He could perhaps get out of the room other than just for dialysis. Thursday night I took him a T-shirt so that occupational therapy could start working with him to put it on. WOW!!!!!!!! I'm sure he would love to have something on besides those lovely hospital gowns. With the weight he has lost that T-shirt may look like a gown when he puts it on.

It is still hard for him to retrieve things to do in the bed. We were able to get another bedside table so we could leave his Bible and a crossword puzzle book on it all of the time. This way when his food tray comes there is not a constant moving things around and then not have them where he can at least try to get them. I am sure that will start getting easier, the more strength he gains in his hands and arms. The OT brought him a "stick" that he can use to push the buttons to raise and lower his head, but unfortunately he can't get the button that puts the bed into a chair position. Since the bed he has is not a regular hospital bed, those tables do not roll up under and get in position very easily but this is a start and he works on it.

The last biopsy done had awesome results. The heart is functioning just as it should and all of the pressures were great. There is still no sign of rejection --PRAISE THE LORD!!!! Ken's doctor was able to lower the dosage of the steroid and plans to do another biopsy in the next week or so to see if they can lower it again. The steroid is part of the anti-rejection medications and has effected and weakened his muscles. It is also the reason he has had to have his blood sugar checked and be on insulin. With the dosage being lowered after this last biopsy Ken is no longer having to go through the finger sticking and insulin shots. That is a big PRAISE THE LORD as well.

Hannah has gone back to school to get her masters degree. She found out she will have a little time between her summer classes and returning to work -- She is coming home Tuesday!! It will be so good to see her. When she saw her dad at the end of March it was difficult for her because Ken was very lethargic the whole time she was there. After Hannah left, we found out Ken had that first blood infection which was the cause of him being out of it pretty much all the time. This visit should be much better for both of them. She will stay for a week before returning to Portland. We have been so blessed by the generosity of people providing plane tickets for Josh and Hannah since February. That generosity is also making this trip for Hannah possible. It had been offered to us when we were in Baltimore and we did not have the opportunity to use it. God is so faithful in providing - it was still available to us at this time. Ken was confused when I told him Hannah was coming on the 12th. She had already told us she was going to come home for Christmas and so December is what he was thinking. He asked, "She's not coming for Christmas?" and when I told him yes she was, he looked at me so funny. Then he said, "Thanksgiving?", still with that look of total confusion. It finally hit me that he didn't realize her schedule had changed. When I told him it was August the 12th, he was still a little confused but that look was replaced with a smile and eyes full of joy. He only knew she would not have any time this summer to come home so that was the reason for his confusion. Please pray for me on Wednesday morning as I drag myself out of bed--Hannah's flight does not get into Nashville until after 11:00 Tuesday night - no telling what time my head will hit the pillow.

Ken has definitely enjoyed seeing Josh, Melanie and Jack the past couple of weekends (yes, me too. We have appreciated them driving in and spending the weekend away from home. After the first of the year, they moved east of Nashville to Cookville. It is about an hour and half away so they just come in and stay. They have been trying to sell their house for months now, (after watching the news we all not what that is like), but this past week they finally have a contract and are just waiting for the inspections. They have gone to the beach in Florida so it has been a little quieter at the hospital this weekend. We look forward to seeing lots of new pictures.They have gone to the beach in Florida so it has been a little (OK, a lot) quieter at the hospital this weekend. It has been such joy to watch Ken and Jack interact with each other. Jack just sits up there in the bed with Ken and chatters away. You would never know that the two were separated for four months - Jack has, not even once, hesitated going close to Ken. That goal of going fishing is getting closer for the two of them - wait til you see those pictures!

I will try to get you up dates sooner than I have this time. We know you are still praying and we are so thankful. I am looking forward to reporting how those prayers are answered in yet another week of this journey!

A GREAT WEEK

We're working on the next 32 now -- We had a great anniversary! I arrived at the hospital Wednesday night just after Cheryl and Larry entered Ken's room. There I found flowers, cards, a red and white checkered table cloth on the long bedside table and a faux candle that added just the right touch for a romantic dinner. Cheryl had thought of everything. Earlier in the week, Larry had asked Ken what he wanted for this special evening's meal -- PIZZA! You just gotta laugh - Cheryl is a wonderful cook and Ken wanted our favorite pizzeria's vegetarian pizza. Sooooooo-- we had pizza and Caesar salad on white plates, with lemonade and Dr. Pepper in lovely stemmed glassware, and dessert on cute little dessert plates. It was a fun meal and easy for Ken to eat. I had taken the laptop and CDs so we could have a little Italian music and we had the Nashville skyline as our view. It couldn't have been better. Cheryl and Larry had provided a vase of white daises for our dinning table and that sneaky Tin Man had once again managed to surprise me with flowers, along with not one, but two cards signed by him. One of the cards even contained a hand written message, and since we had not worked on holding a pen and writing since being back in Tennessee, I was quite surprised and very touched. Our neighbors, Brenda and Tom provided us with sparkling white grape juice and glasses along with a mixture of chocolate kisses. I just wish I had not left the camera in another bag so I could have pictures to show you. Later I did take this picture of the flowers -- They are gorgeous!!!

My first day back at work was a little strange but good. When you start to do something that six months ago you could do with your eyes closed and now the process is a little fuzzy it tends to be a little unnerving. I finally found all my cheat sheets and got a little more organized and so Thursday was a lot better. I am glad it was a short week however. It was good to see everyone and to feel welcomed back. On Wednesday morning I got up early and went for a walk before getting ready. After that late night anniversary dinner, Thursday morning did not include a walk, I slept instead. Come Friday morning -- let's just say it was a good thing Fridays are casual wear. I do believe Ken and I will have to work out something to where I am not going to the hospital after work every night. (Don't tell anyone, but I'm not as young as I use to be)

This weekend has been good. Josh, Melanie and Jack once again blessed us with coming and staying for the weekend. This one was extra special for Ken - There was a REUNION for Pops and Jack!!! With Ken being out of CCU and in a private room Jack got to visit. It was a much anticipated visit. Ken has seen plenty of pictures, but just ask any grandparent if that is ever enough. Jack came in wearing his Pops' Life Is Good cap to let him see he was taking good care of it. Pops told him "good job" and to hang onto it a little longer. Jack was so good. He just had a good time up on the bed looking at and talking to his Pops. I'll have to remember to bring the fishing game next time so the two can practice the fine art of holding the pole.

Ken has physical therapy at least six if not seven days a week and they are working to get him to stand up. One of the therapist brought in a machine that somehow attaches to Ken and with him holding on to some handles this machine raises him up and then puts him back down. He has not been up for more than a couple of seconds each time, 'but ya gotta start somewhere'. He has not had the swelling in his hands lately so I'm sure that was a large part of his being able to write. The swelling in his legs has also been less this past week. That is very encouraging - something is working, whether it is the amount of fluid removed during his dialysis treatments, his fluid restrictions, physical therapy and getting stronger with mobility or a combination of it all, we are happy to take the results.

My mom and dad will be here this coming week before heading back to Texas on Friday. It has been great having them here, not only for their company, but the help they have been both at the house and hospital. Ken will be having another heart biopsy done Tuesday and we are praying for the continued absence of rejection. I am sure at least one of my parents will be at the hospital waiting for him to get back to his room and that really helps to ease the anxiety that comes from knowing I will not be there.

If you would continue to pray for Ken's mental strength as well as physical that would be great. He is feeling better and so that starts to make being in the bed less appealing. He is ready to come home so that sometimes brings on a little more depression. We are trying to provide things that will keep his mind busy that he can maneuver by himself. It is not that simple to just read a book or work a puzzle. I need to get it where he can access those things more easily on his own and feel more independent. This will be my first full week back at work and would ask that you just pray I would find the balance between taking care of myself and still giving Ken the support he needs from me. My parents will leave Friday morning so please remember them as they drive back to Texas. Thank you once again for your continued love and support - God Bless You and have a Great Week!!

P R O G R E S S !

I'm sure many of you are beginning to think I've given up on updating the TIN MAN'S progress - not so - just slow!! There has been much progress since the last report. Ken is still in CCU but that is scheduled to change Monday when he will move to a regular room. Physical therapy and occupational therapy have been working with him to increase his upper body strength. He is able to sit up on the edge of the bed by himself longer once they get him in position. Wednesday, he really showed out and shuffled his feet a little while sitting up. That was like "walking and chewing gum" at the same time. Then yesterday he could only sit on the side of the bed for about a minute. There is still a little up and down on the "Good Day" chart, but definitely not to the extent it had been. Dialysis treatments have been changed to a Monday-Wednesday-Friday scheduled per his request. He is planning for the future and didn't want our weekends to be hampered with a Saturday dialysis.

Ken is not always hungry but he is really trying to eat when the meals come. The condition of his skin has improved so much in the last couple of weeks. Other than some skin tears, his wounds have either healed up or are all scabbed over. The scabs he has had for a long time are finally starting to get smaller and loosen up. That protein is important stuff when it comes to his body improving. Another huge step in his progress is the ability to feed himself. He still requires some assistance, but is able with determination and concentration to get that bite from his plate to his mouth. The doctor has limited his fluid intake to 1400 cc (eight small Styrofoam cups) a day. It is somewhat humorous listening to him discuss with the nurses where he is on his limit and making sure he has enough for the nightly meds.

I am so grateful this is a good report I have been able to share with you, but please continue to pray for his mental strength as well. He is getting better, but it is not always easy for him to see that since everything he does requires so much physical and mental energy. He tries not to be frustrated with himself and the situation, but I can tell he is at times. Who wouldn't be after five months in a hospital bed.

I have been trying to get myself ready, both mentally and physically, for my return to work this next week. My parents are driving in from Texas and will be here sometime late Saturday afternoon or early evening. Please pray for them and their safety. I am so thankful they are able and willing to come and help out. As Hannah says, "Sometimes you just need a Momma Hug" - there is something to be said for a Daddy Hug as well. Anyway, it will be a great comfort, knowing they are available to help Ken, when I resume working. If the truth be told they are coming to get their first -- first hand look at that very special great grandson of theirs. I know there will be more than looking - my mom already said she can't wait to get some of those sugary slopers Jack has been giving out lately.

This Wednesday, July 23, when my first day back at work is over, you can count on me being at the hospital. I have a date with the man I married 32 years ago. We have some very special friends who are going to provide us with an anniversary dinner in the most romantic setting in Nashville this year - for me anyway - Ken's hospital room. Who would have ever guessed those vows we spoke 32 years ago, "in sickness and in health" would have been put to the test as they were this year. This is going to be the best anniversary ever!! And here's to 32 more!!!!

WEEK THREE IN NASHVILLE

It doesn't get any better than having the grandson (and his mommy and daddy) spend a long weekend with you. Josh, Melanie, Jack and Maggie (their dog) came in Thursday night. Josh spent quite a bit of time at the hospital with his dad so I could have a break. Ken enjoyed having him there and I greatly enjoyed my time with Jack and Melanie. Ken told me yesterday that it wasn't fair I got to see Jack and he didn't. I know it is hard for him to feel so cut off. Between Melanie and myself we had a camera flashing all weekend so Ken would at least have lots of pictures and videos to look at. The digital camera and computer have been a real blessing during this journey. I am hoping to have the "Tin Man's Journey" slide show available for you soon.

These past two weeks have been a little discouraging at times. It is unbelievable how much the trip home set Ken back. Yesterday was the first time he has been out of the bed since we got back. Physical therapy has not wanted to do very much with him because they say he is too sick. It seems to be a vicious circle. His bed is one that you can push a button and it turns into a chair, so at least he has been able to set up some. Ken and I continue to work on what we can. We have been playing Yahtzee and even some dominoes. I found it is a much easier way to get him to stretch and work on fine motor skills. It is still very hard for him to do yet we just keep going with the thought, "slow and steady wins the race".

Ken is still receiving dialysis three days a week. He tried to talk the doctor into just two times a week but she just laughed and said, NOT NOW! He thought it was worth a try. His appetite is starting to come back but it is still a struggle to get him to eat enough; however, he is trying. The doctors ran a culture on his sputum the other day and found an element that can cause bronchitis or pneumonia. His left lung was a little concerning to the infectious disease doctor and so they have put him on an antibiotic for the next seven days. We pray that will take care of it. In order to start the antibiotic they had to put in an IV. That is always such an unnerving process for Ken because they have such a difficult time finding a place. We make it a point to ask them to send the very best they have. The lady that came up yesterday was a delight. It is always nice when they are great at what they do as well as have a sense of humor. She helped Ken relax as she cut up with him and when she had successfully put in the needle she said "God is good" and Ken replied "All the Time". We had all been praying!!

This journey continues to be a day by day adventure with not knowing what the next day holds. I know that each of our life's is like that and we never know what the next moment holds. Sometimes it would just be nice to have a small glimpse of what tomorrow might hold. My time is running out on my leave of absence and I know it will be a big adjustment for both Ken and I when I am not able to be at the hospital all the time. In some ways I am looking forward to what was a normal routine before January 2nd. I know it will be far from normal but God has seen us through thus far and I am positive He will continue to be FAITHFUL!!

THE TRANSITION CONTINUES

Week two of being home. Ken is still in CCU and trying to regain some strength. The trip home really took a lot out of him and he is not eating very well. Hopefully everything will get back on track (whatever that is) soon. Being home has actually started to feel like being home. The hardest thing for me is being so far from the hospital. To go from walking a block to driving for 30 minutes or so (depending on traffic) to get to the hospital has been the most difficult thing for me. The fact that Ken cannot pick up the phone and call me, so I can at least hear his voice and find out what is going on, causes a little bit of anxiety at times. We will just keep working hard with physical therapy so that can change soon. As you recall it took lots of hard work for him to get to where he could use the remote. Unfortunately, the TV in his room is different and he is not able to work it by himself, no remote, but he can definitely see it better when it is on.

Ken has had four nurses since we have been back that were his nurses at one of his last admissions. They all came in saying 'I took care of you on 5-Kidd when you were here another time'. Even with his bald head they knew who he was. Ken can definitely leave a lasting impression. He has always been one to joke around with and take an interest in the staff that cares for him, regardless of what capacity they serve.

The rehab center is still not wanting to accept Ken, so for now PT, the nurses, and myself are working with him. We are not sure what is going to happen but we will continue to take one day at a time. He is continuing to get dialysis three times a week and they have been pulling off fluid but he still has so much, especially, on his legs and arms. They ran some test yesterday on his spleen. My understanding is to check on the condition of his red blood cells. They are also trying to see why his skin is so paper thin. We are not sure when or if they are going to take him out of CCU.

Josh, Melanie and Jack came to town this past weekend. It is always so good to seem them - not just Jack, like they accuse me of. Ken enjoyed their visits as well, but we are so anxious for him to get to see Jack. For now when they come to the hospital I have to stay in the waiting room and entertain Jack, or maybe that is the other way around. He is a true blessing and such a joy to be around, except when it is bedtime and he is hungry and tired. One night I had to call the room and when Josh answered and heard Jack he told Melanie, "He's crying" and then he told me "She's coming", and I didn't have to say a word. He was crying so hard and there was no consoling him, but when he saw his mommy the tears stopped and sounds of delight took their place. He was all smiles and those big blue eyes were just dancing!!

Well, as you can see, there is still much to pray for in Ken's healing. We are looking forward to the day 'Home' really does mean 'HOME' for him. We both continue to need prayers for strength, both physically and mentally. Please continue to pray for those who are caring for Ken, that they would have the wisdom to take care of all his physical needs. We still continue to see God's hand at work in our lives and we are so grateful.

HAPPY FOURTH OF JULY - we hope it is a great time of fun and fellowship with your family and friends!!! I think we will be able to see the fireworks they have in downtown Nashville from the hospital so we better start practicing our "Oohing and Awing"!!!

WHAT A RIDE

"HOME! And this is my room--and you're all here! And I'm not going to leave here ever, ever again, because I love you all! And - Oh, Auntie Em - there's no place like home!"

Those were the words of Dorthy when she woke up in her own bed after her adventure to Oz and back. We said some of them -- but mainly just "HOME" and "Thank you Lord for putting us safely on the ground!!". It has been a while since I've seen the movie, but I recall the rough ride being at the beginning of Dorothy's journey. Not the case for us. It was definitely not the ride we had going to Baltimore and so I was not even prepared for the storm! Not a literal storm outside the plane but oh what tossing and turning there was on the inside. I have flown many times in my life but this was the first time I ever got sick. AWFUL!! Ken was so uncomfortable due to bunched up sheets and an uncomfortable-too small mattress. There was not enough room to move around and try to get him really comfortable. I tried pulling on sheets while buckled in my seat since the plane would suddenly drop and twist and turn at any moment. I DON'T THINK THAT WAS THE SLIDING INTO TENNESSEE I had mentioned in a previous entry. I just kept praying and rubbing Ken's head to calm him (and me), and we kept saying we're going home, we're going home.....There's no place like home!!

The ambulance was there to meet us at the landing strip and we went straight to Baptist Hospital in Nashville. My neighbor, Brenda, came and picked me up after Ken was all settled for the night and took me home. I was so tired I did not even pull back the sheets on the bed. Tuesday morning I had my first experience with driving and FILLING UP WITH GAS since February 21st, but I managed to travel that all to familiar route to the hospital without incident. Ken's care this week has been mostly about getting him settled after the trip and familiarizing themselves with were he is in his recovery. He got dialysis three times since Tuesday as well as three units of blood since Thursday. He has been sleeping a lot and his appetite has not been very good, but we are hopeful with the rest and the units of blood we are looking at more productive days of rehab this next week.

For various reasons, some of which I will share at another time, this week has been extremely difficult. Even though we are back "home" we have both experienced some feelings that we were not really prepared for. We feel a little lost and out of place. This probably seems very strange to you since this is what we have been wanting and praying for, and it does to us as well. I know this will pass, and before long we will have established a routine and be very comfortable with his care, but for this week it was a little unsettling. We are extremely grateful to and for the people of UMMC of Baltimore for their hard devoted work to get Ken to this point in his recovery and back home. Their tender and caring hearts made us feel at home and loved through PART ONE of The Tin Man's journey to get a new heart.

Our gratitude continues to increase daily for each of you and your faithfulness to help meet our needs physically and to lift us up daily to our heavenly Father for renewed strength and healing. We hope you continue this journey with us. I even gave the Tin Man a new look for Part Two (thought I'd mention it -- just in case you didn't notice). God has been so faithful, and we give Him all Glory and Honor for He is worthy of all our praise.

The Tinman and Dorothy have landed in Tennessee!!!!

It's good to be back! More travel details to come, as soon as things have calmed down a little bit! Thank you for all your prayers, please keep praying. Until Kenneth is fully settled in the hospital, the doctors don't recommend visitors, but you can still call my cell phone. Hopefully we can all visit soon!

A MONDAY NEVER LOOKED SO GOOD

What a week!! Here it is Friday. That day of the week we can't wait to get here. You may think I've lost my marbles when I tell you, I can't wait for Monday to get here!! Oh, but wait until you hear the reason. (Sing if you know it) We're leaving, on a jet plane, don't know when we'll be back again (to Baltimore that is) --- Destination: TENNESSEE!!! 10:00 AM Eastern Time has been set as "pick up time". The nurses assigned to accompany Ken to Nashville on the air ambulance should arrive to get him and gather the information needed to care for him in flight.

I still can't believe it - and I bet you're not going to, until I report from Nashville - "The Eagle Has Landed". So have a great weekend and I'll get back to you on Monday!!

RUBY RED SLIPPERS ARE NO MATCH FOR INSURANCE

WELL-here it is - Day 168 of residing in Baltimore, and Day 119 on 6-W. People around here are just shaking their heads. According to the plans at the end of last week and the beginning of this one our sights were set on Tennessee. I had clicked those ruby red slippers until the heels were void of sparkles and the nurses knew when they saw me talking to myself it was just my daily mantra of "There's no place like home". Perhaps I should have kept those slippers here with us instead of sending them on home with all our other belongings - Dorothy actually had her pair on when she went home - should have thought that one through better.

I mailed the last of the boxes on Tuesday morning, and I was ready to fly, but when I got to the hospital and talked to the coordinator who is arranging our trip --she was not smiling -- BIG MESS!!!!!!!!!!! After all this time, there is now a question of who is primary on paying for this little adventure. Insurance I carry through work or Medicare. The debate and investigation is still ongoing and until it is resolved looks like we are remaining in Baltimore. Phone calls, e-mails, and meetings have been taking place in an effort to resolve this issue or find alternative solutions. The first issue is getting home. Medicare does not pay for air ambulance. The second issue is where to go when we leave here. The rehab in Nashville does not want to accept Ken if Medicare is primary. As I understand it, this has to do with the amount of time he has been in the hospital and the number of days left with his Medicare benefits. The phone calls, e-mails, and meetings are taking place on both ends and between parties at all levels.

Nurses that told us bye, knowing they wouldn't see us Tuesday or Wednesday are now coming back, shrugging their shoulders as if to say 'what's up, why are you still here?'. We have had nurses offer to drive us back themselves. One of our favorites said she could rent a U-Haul truck, load Ken and his bed up, drive us home and then bring the bed back. She even had an accomplice -then they came to their senses (liability). We can't wait to get back, but we sure are going to miss a great group of people around here.

Monday and Tuesday night I stayed at the empty apartment, but yesterday I went ahead and moved everything we have left over to the hospital (that's not much - you can't take much on the air ambulance). The funny thing is those boxes that were dropped off Monday and Tuesday to be shipped home - according to my neighbor - have already started arriving. I didn't think they would be there until next week since we sent them at the cheapest rate. Looks like I got that backwards - the boxes arrived but we may not get there until next week.

Ken has now had dialysis four days in a row. The goal is to get as much fluid off as possible before sending him back to Tennessee. Yesterday alone, they removed four liters, that's a lot. The total for the week has probably been eight but they plan to try again tomorrow. Today he has been so tired, he would fall asleep in mid sentence. One of the transplant NPs wanted him to do some exercising in the bed. He is still working on raising his arms and hands up off the bed so he was suppose to wave at everyone who walked by his door. We had a tally chart drawn up on the white board but those brown eyes could not stay open. Maybe he'll have more success tomorrow.

I have added a couple of blankets on the fold out chair so I think I'll go try it out and see if that improved it's comfort level. I don't know what answers tomorrow holds but we hope and pray they are the ones that get us home. We covet your prayers as we have from the beginning and continue to thank you for your faithfulness in lifting us up. God has definitely been faithful to answer prayers and work out the details - He will this time as well. Guess we don't need those Ruby Red Slippers after all - The insurance is no match for God!!!

THE RUBY RED SLIPPERS ARRIVED

There in the floor, when I opened the door, was a package that held such a delightful surprise. I couldn't believe it - I can be DOROTHY!!!! One of my cousins had sent me the Ruby Red Slippers - I guess with all of the tornadoes this spring she found the 'Wicked Witch of the East' under a house in West Texas. I've been clicking those heels and I think I just about have it down so we should be back in Tennessee before much longer.

Ken is really getting stronger, and I feel like he finally thinks so as well. He is eating really good and that has helped in lots of areas. The wounds that were so bad are finally starting to get better. He is working hard with the physical therapist and although he still has a ways to go I can see progress each day. Tuesday, we had a "Do A Little Dance" moment!! The trach was removed completely. It is amazing how fast that area can begin to close up. He now has a nasal cannula, all tubes have been removed and it is so much easier to turn and move him about.

Today we went out in the hallway, to get a change of scenery, and we had several nurses from the CSICU come up to talk with us. One of the nurses said she had several people ask about Ken today, so she led us past the closed double doors to visit and let the staff see for themselves how well he is doing. As I pushed him through the doors she announced, "He's just visiting not returning!!!" (PRAISE THE LORD) There are several from that unit who come by Ken's room on a regular basis, before or after their shift, to check on him as well as those who are just passing by and wave or stick their head in to say hi. After leaving the unit we were out in the hall at least another 30 minutes visiting with a some of the nurses we did not see back there.

The first words we always heard were, "You look really good!", and then the question was, "Any word about going back home yet?". Well, now that you mention it.............. Rumor has it, next week, possibly Tuesday or Wednesday!!!!!!!!!!!!!!!! I told you I've been clicking those heels. My cousin, Barbara, included a poem with the shoes. I would like to share stanzas two, four and six with you:

The Tin Man is better

He's got a new heart

And now for an ending--

Oops--it's just a start.

Prayers have been answered

As we all can see

Now you can set your sights

Back on TENNESSEE!

To God we are thankful

But our prayers are not done

We'll keep praying for you

'Til the healing is done.

We are not on the plane yet, and there is still lots to do, but as I've been reminded: KEEP MY EYES ON JESUS -- LIVE EACH DAY IN HIS PRESENCE -- GOD'S TIMING IS ALWAYS PERFECT!!!

YES---NO---MAYBE SO???????????

I have not been very good about keeping you updated lately. Seems like anytime I can get to the computer there is not any energy to try and find the words to convey what is going on. Even now I am struggling. Last night I was thinking about the blog entry I did back in March entitled TIME TABLE. Three weeks had gone by then -- A little more than three months now!! I definitely don't have the brain power to try and break it all down like I did then.

Ken has not been at our home in Tennessee since the morning of January 2nd when he was taken by ambulance to Baptist hospital. Yesterday, marked five months in Baltimore. By the time we go back, half of 2008 will be over. I guess that is what made the events of the last couple of weeks so hard. "Yes we're going - No we're not going - Maybe we're going - NO WE'RE NOT GOING"!

June 2nd was the target day for us to return to Nashville when Ken was moved from CSICU to Telemetry. I am still not sure where all of the communication break down happened, but there were definitely different agendas trying to be worked out at the same time. Although each party had Ken's best interest in mind, unfortunately we were the ones being pulled emotionaly in different directions. When we were already so physically and mentally exhausted it didn't take much tugging to cause extreme pain. I know all of the intentions were good on every one's part but ........................ We still do not know specifically what is going on, so we just do what we need to each day to get Ken stronger so we can go home, and.....................

THAT IS GOING TO HAPPEN - Ken is getting stronger every day. His trach was downsized again today and that means the next step will be to remove it completely. That will be a great day - just like when the feeding tube came out -those 'outward extras' that are reminders of how sick he was and how far he has come. Physical and occupational therapy went very well today. He sat up on the edge of the bed longer than before, and actually was balancing himself for a very brief time (LOOK - NO HANDS). After laying him back down he was transferred to the chair where therapy was continued. His hands, especially the right, are getting more flexible, but the fine motor skills still have a ways to go. Whichever skill is required, he has figured out how to work the TV remote (just like a man). I took some pictures and short videos of Ken's therapy session today, and when he asked what I was doing, my reply was, just documenting this so at a future day you will see how far you have come. He still does not know the half of it.

Dialysis is still being done at least three times a week and we are still hoping his kidneys will start functioning again. Several weeks ago, I shaved Ken's head - yes, that's right he only has fuzz on top. Anyway, when he has dialysis he gets really cold so I took him a stocking cap to wear. Seems to do the trick. He is eating good and so his skin is starting to look better. He continues to have several places that are not healing very fast but they are staying on top of it with the wound care nurse. His blood pressure has been pretty low the last couple of days but he is not feeling any effects from it. One of the NPs told him today to eat some salt with his food- he hasn't heard that one in a long time.

As you can see, we are just taking one day at a time, and looking forward to the day when everyone involved will say - YES it's time to go home !!! I wish I could think of another word to say besides THANKS -but -THANKS, as always from the bottom of our hearts. God has truly blessed us through you all.

JUST TO EASE MINDS

I know that when I do not post anything for several days some of you get a little concerned. Kenneth is doing okay! Today, the last of the stitches in his body were removed. He has only one drain left in his groin from where surgery was done to close up a large wound. There are several other places on different areas of his body that are not healing very fast and continue to be watched closely. Dialysis is going without incidence which is great. The fistula is working and his blood pressure is not dropping like it was. He has been eating good and continues to get stronger. The trach was downsized last week and should be able to come out completely before too much longer.

Even with all that is going great, for which we are grateful and rejoicing, it has been an extremely upsetting and emotional week. It all has to do with going home and the confusion and lack of communication that has taken place. I ask that you please pray for an extra portion of wisdom, patience and strength, both physical and mental, for both of us.

THANK YOU!!!!

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!!!

SURPRISE!! - BETTER LATE THAN NEVER??

What a week!! Life is a journey, and then when you add the twist and turns - you get adventure. It could be an adventure you planned, like going to Disney World, or like one of those rides at Disney World where you don't know what is around the next corner you come speeding towards. Sometimes you can see the turns coming and perhaps prepare for them or even be waiting for that expectant turn you know will bring much awaited change. The real kicker is when an unexpected twist comes and all you can do is shake your head trying to clear it of those stars you see circling. There have been many different emotions this last week stemming from turns and twist.

SATURDAY AFTERNOON:
This is not the only time we have taken the scenic route with a hospital stent, but this has definitely been the most scenic and hair-raising route. It always seems there is this one point Ken has to get to in his recovery and then .............everything turns around. Last Monday, as you recall, the surgeons used a metal plate to stabilize his sternum. I honestly believe that will be the day we will recall as the REAL TURNING POINT in this recovery. He was able to get in the chair Tuesday, Wednesday, Thursday and yes even Friday. He has been on the trach collar for shorter periods of time but has increased the amount of time each day, and then he stays on the vent over night. SLOW AND STEADY SAID THE TORTOISE. As I am writing this, Ken is not on any IVs for maintaining his blood pressure. That has been the case now for at least four days, and at times, there are no IVs running. When you have fewer machines running you cut down the chances of some bell or whistle going off every five minutes. MUCH QUIETER!!!!

SUNDAY AFTERNOON:OK - everyone up - cheers and clapping are required as you read the next couple of lines.

KEN LEFT HIS ROOM TODAY!!!!!!!!!!!!!!!!!!!! No, No, No - I'm not talking about lying on the bed looking up at the ceiling tiles. This was an honest to goodness FIELD TRIP. With his required equipment and entourage in tow, he rode, sitting up, in his chair out the SCICU DOORS, down the hall to the elevators, down one floor and over to a small sitting area in the atrium! Do I hear a HALLELUJAH - THANK YOU JESUS!!!!!!!!!! I felt like we were in a parade going down the hall and Ken was the grand marshal. It was not a long outing, but it was an outing none the less.

That was a very much needed outing. Ken's nurse called me at 7:30 this morning to let me know that he was anxious, emotional and had not slept well last night. He had begged her to call me. When I got here, he was up in the chair and on the trach collar but he was not happy. He said he was tired - tired of being poked and prodded constantly - and just wanted to go home. The outing was good for the change of scenery, but he was already a little tired since he had been in the chair for about five hours. While we were out of the room, his nurse noticed his feeding tube was not as far in his nose as it had been. We got back into the room and she needed to get it back in place. That is where he receives, not only his nourishment, but also his oral medications. Unfortunately, it was not going back down and he was choking. It had to come all the way out and was going to have to be put back in later. That was the "straw that broke the camel's back" and all of the emotions came pouring out. We cried, I prayed and he closed his eyes for awhile.

I went out to talk to the nurse practitioner and his nurse about what was going on. Sarah, the NP, went to his room, put him back on the trach collar, put on the speaking valve and they talked. She gave him a chance to express his frustration, and really listened. When they finished talking, they shook hands on their contract: He will have two days a week he decides what he wants to do and for how long; So he can get some rest, there will be nothing done between midnight and six am except two pricks to check his blood sugar. He felt better - Sarah felt better - I felt better. Sarah said the fact he voiced he was hurting and felt frustrated meant he was really doing better because before he had been too sick to care if he had a say in anything.

MONDAY MORNING:
I had every intention of getting this out last night - was too tired. The phone rang at 6:30 this morning with Ken's nurse on the other end. They had to restart the IV for his blood pressure and he was begging her to call me - he needed to see me. When I got here he was obviously very agitated and panicky. He was shaking so hard he could hardly breath. Finally I understood that he was freezing and wanted the warming blanket (blows warm air in). His communication was mixed with rational and bizarre thoughts. They took his temperature and sure enough it was high - another infection somewhere. They have already started running cultures on everything they can get their hands on. They should be starting an antibiotic soon. Looks like we are doing the Texas Two Step again (if your confused -that's one step forward - two steps back). I guess this was one of those turns that came as we were speeding around the corner looking for the exit.

As I said in the beginning, sometimes you get those twist that come out of nowhere. This last Thursday night I discovered that my computer was gone. That's part of the reason you did not hear anything from me until now. When we first came in January, we met a lady in the waiting room whose cousin was in the cancer unit. We would run into her when we came up to visit with Mr. Burroughs. When Ken had his surgery, she was still here at the hospital and we would visit in the waiting room. To make a long story short, over time I let her come to the apartment a couple of times to take a shower and sleep on the couch. The beginning of April she had to go to the emergency room with pancreatitis. When she was discharged I invited her to sleep on the couch again. She was in and out of the hospital several times and had even had surgery once. He cousin had been moved to a rehab earlier and was suppose to be discharged this week. She was suppose to have surgery again on Friday and then she and her cousin would be able to go home. Her cousin lives here in Maryland and she is from Florida. When I got home Thursday night from the hospital, the apartment door was unlocked and it was dark inside. The key was hanging where it went, there was no note on the coffee table as there had been at other times and when I looked around - my lap-top was gone along with the power source. Talk about shocked -- I could not believe it....... I took care of details that night on passwords with the help of Paul and Cathy. Maybe I am too trusting. I never felt I was being reckless or that I shouldn't be letting her stay. I am still shaking my head in confusion but have chalked it up to a LESSON LEARNED. My attention has to be on Ken. Paul and Riley went Friday and bought a lap-top, loaded everything on it and shipped it to where I had it Saturday morning. What a blessing! God continues to protect and provide. I probably will never see this lady again nor will I know why this happened, but God does and so that is where I have left it - in His hands.

I know --- many of you thought I would never shut-up today. Please pray for Ken's body to respond to the antibiotics and for the source of infection to be found quickly. That this setback would be very short lived and the signs of improvement would get longer and stronger. All he wants to do is go home - please pray that would be soon.

I will be sure and get another update out soon. God bless you.

O.R. UPDATE

According to the plastic surgeon they were able to accomplish what they went in to do. Both areas worked on did not have any evidence of infection - that was a huge plus. Ken had to be given blood but in part because he was already on the low side. He was in quite a bit of pain upon returning to the room and I have a feeling he may be for several days. A lot was moved and shifted inside. In the larger picture I really believe this will be a definite boost to his continued healing. Just the stabilizing of the sternum will be a big relief. We had already talked several times about how he felt when he was rolled from side to side and brought to an almost sitting position. Ken said it was as if everything was popping and coming loose - very unnerving for him. The surgeon made the comment today that Ken was not healing very fast from what he saw. I truly hope this is the only day of surprises this week - they wear me out more than working in the yard all day. Good night and have a Great Tuesday!!!

BACK IN O.R.

As I have said and said and said.........Things can change before you even turn around. The plastic surgeon examined the opened chest area this morning and it was decided to go ahead and take care of it in the O.R. There were some cancellations in surgery that opened up a room so all systems were go. The plan as I KNOW IT NOW is cleaning out, making sure no infection is present, stabilizing the area with a metal plate or muscle flap and closing it up. They are also going to look at the area in his groin to see what shape it is in and the best course of action to get it closed as well. Should be about a two to three hour procedure. I will update later.

HOW MANY TICKETS FOR THE FERRIS-WHEEL

I had several people ask if everything was okay - it's been several days since I updated and they were worried. I know you must get tired of reading "I can't believe it is.....(date)", but here it goes again; April 26th - YOU'VE GOT TO BE KIDDING!! We have now past the two month mark since the transplant. Ken has made a lot of progress, but "our tour in Baltimore" still has some time left. When I stop and think about Ken's progress; he has not had his feet on the floor, sat up on the edge of the bed, lifted his arms or legs on his own, been able to eat, drink or write, and he has not been able to talk without the use of a speaking valve. However; the fact that he is lying in his bed awake, able to communicate and still has a sense of humor is a MIRACLE.

I got tickled yesterday when one of the transplant nurses said we were off the roller coaster and had now moved onto the merry-go-round. I told her I was ready for the SLIDE - right back to Franklin.

It has been a good week in spite of its ups and downs. Ken's blood pressure continues to be an issue at times, but thankfully at this moment he is off all IVs to keep it up. The nurses have been able to remove fluid most of the week even though it remains such a numbers game when fluid is continually added through IVs. Last weekend and the first few days of this week, there seemed to be the possibility of another infection brewing. All the cultures came back negative so there was a little uncertainty regarding some of the signs he was displaying. The tube feedings were restarted and it appeared by looking at the contents in the drainage tubes the result of the thoracic duct surgery was still in question. The contents still look suspect but the feedings continue and there does not seem to be concern. In the bottom part of his chest incision an area opened up earlier this week, leaving a hole that was sucking in air. According to the report I got, the plastic surgeon would take Ken to the O.R. this next week and close it up. This morning the area became larger and it was uncertain if he would go to surgery sooner. The surgeon instead placed a wound vac with the hope fluid will be suctioned out and the area will be allowed to heal from the inside out. Upon arriving at the hospital yesterday his nurse informed me, outside of Ken's room, the latest chest x-ray showed he had a collapsed lung. It did cause some difficulty the first time they put him on the trach collar but he has been able to tolerate a few short periods of time since.

There have been times this week I asked God how much longer. I walked out of Ken's room and saw, in the bed next door, a man who has been there since November. I also felt sorry for myself this week, wondering how many more things could go wrong. Mr. Burroughs came to my mind and the realization hit - I still have the opportunity to return to Tennessee with Ken and celebrate our 32nd wedding anniversary. Looks like God provided that ferris-wheel ride, because He loves me, so I could get a better perspective on things.

I was reminded by a friend tonight that we do not always need a list to pray from because God knows what is needed already. Then I read, "But if we look forward to something we don't yet have, we must wait patiently and confidently. And the Holy Spirit helps us in our weakness. For example, we don't know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words. And the Father who knows all hearts knows what the Spirit is saying, for the Spirit pleads for us believers in harmony with God's own will. And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them." Romans 8:25-28

Thank you for faithfully continuing to pray and support us. I pray you have a blessed Sunday with your loved ones.