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!!!!