New Year's Eve Update...

Baby steps...and we'll take them! He is better balanced, and had lots of smile provoking company this week.:) The hospital staff is amazing. They go out of their way to help in so many ways, and to connect , in so many ways.The medicines are a balancing act. I know that I would not like so many meds. in my body. So with each medicine removal, I am pleased.

He was blessed by an Orthodox priest from a local church who just happened to be in the hospital blessing one of his parishioners who had been in a bad car accident right before Thanksgiving.After being sleepy all day, when Fr. came into the room, he sat upright and gave his hand. He was instantly wide awake. The icon he was blessed with is from the 700's,(yes, you read that corrrectly! ) and it is their patron icon. It has performed miracles here & in Russia. It had been preserved here during the war(s), and now visits Russia for one month a year. It is beautiful and very heavy, besides being ancient.He thanked Fr. at the end, and said that he appreciated it:).These are truly little miracles that run deep.

I hope that he will be able to come home after the rehab. hospital. He is learning much, and needs prompting at times, and the meds make him feel so tired, but as a learned neuro-onc. friend recently told me, as long as he progresses, there's no reason to think that he won't continue to progress-no matter how long that it takes:) xo Lydia

Amazing Walking and an Awake Christmas...

So Christmas Eve showed Ken to be tired out from all the therapy. But Christmas Day he was wide awake and enjoying his company! Therapy has been pushing him to walk hundreds of steps w/the walker... and they want him to start going up and down steps.

He has had a potassium issue here and there, which they feel is related to his chemo. They are adjusting medicines.

Thank you for all your support and prayers. He told me yesterday that he was feeling a bit better- this is a first, where he offered up this information.

Hope you all had a Merry Christmas and a Happy Hanukah!

xo Lydia

Starting to want to get back to some artwork, as it helps to balance me. Shifting gears for me is still a bit of work. ..as my focus has been on Ken, the kids,home......later alligator:)

Rehab. Hosp. for Brain Injury/Stroke

Came to Rehab. Hosp. on Fri. Dr. said he was better than he thought. The problem , he thinks, will be Ken thinking that he can do more than he can- ie- physically able to do, but, balance is an issue. They are also changing some meds.. He now has his permanent Occupational, Physical, and Speech Language Therapists.

He is bathing himself, brushing his teeth, sitting up, standing, getting in a chair, and wheel chair. Since he taught wheelchair tennis, he has been in a wheel chair before. He originally sat in one and played tennis in one to see how to approach his wheel chair students. He also has taught soldiers at Walter Reed, as well as other wheel chair students. He coached the top wheel chair junior in wheel chair tennis, who was also the first wheel chair doctor to graduate from Yale Medical School. An amazing individual who has inspired many. Now, maybe Ken can inspire him. (:) xo R.)

Much to do. Christmas is upon us. Tree should be going up tomorrow. Things are moving along. We are happy to have Ken 'home' for Christmas. Being in the rehab. hospital is home for us- as this all happened out of state, the day after T-day. Now, we are just a drive away.

Thank you God. ...just one miracle after another. Thank you. I pray for many more.

xo Lydia

PS- my hubby is amazing, and keeps progressing each and every day. All vision, all moving body parts. His sometimes intricate speaking about how he feels is astounding, and he was concerned for a tournament that he does at the club after Christmas. He said that he had to call this guy, Dave. It has been done already- but just that he can drag this out from his memory is truly amazing.

Rehab Here We Come!

Closer to getting him home. He has a ways to go, and transporting him has its risks.

Thank you all for your emails, texts, comments,cards, music, prayers, warm thoughts, visualizations feelings of inspiration(xo-NH) ..... :)

He walked w/the walker, then sat up in a recliner for over an hour. He is concerned about his clothing for transfer, and I know he misses everyone.He thanked the neurologist,(and told him that he appreciated his help) ,who I really liked since the ER. We have been so very blessed. And this latest unit is so excited for him moving to rehab. They have had him for a week and a half and have come to know him.

So he's been here for 3 weeks! Hope the snow is no problem. Should be . Leaving in am, and snow coming in pm.

Much to do. Goodnite.

xo Lydia

Working on getting into rehab for Christmas...

So things have been moving rather quickly. We have the most unbelieveable social worker working on our behalf for discharge. We are praying to move Ken by Friday. The nurses have to log his progress . This progress has impressed so many of them. He has a long way to go, but he surprises the heck out of us daily.

I cannot even write about so much that happens. I sometimes walk so quickly everywhere, notebook always in hand. I have to charge my cell phone at least 2 times a day. I think that the battery gets drained from being in the hospital.The nurses and aides in this unit are just plain great. They so want the best for Ken and us.His physical therapist even came in extra today, when she said that she would be in tomorrow. Yesterday he stood up 3 times with a walker, and kept working on holding his head up. In bed he sometimes sits up.

But, today, oh my!...His wakefulness is greater each day. Even the nurses and aids are noticing sooo much more and are so very excited.He wants to get better. He wants to get home. He wants to work at doing the best for him. Sometimes he is tired, and yesterday he told me that he 'has his weak days'. He worked with his legs so well today with Candice, the physical therapist. She is so motivated to work with him.

He is talking more with the doctors, and the nurses have to log EVERYTHING for the doctors to see. We have to remind everyone. He talks with us for hours. We've been watching Christmas movies, cartoons, etc.. We play music- Leo Kotke of course, and relaxing Christmas and piano music. It is usually too sedate for him, but right now it seems to be good for him, and it is relaxing for me and his family.

He is taking his Protocel 2x a day, and we are progressing towards the 4x a day. I have used Rescue Remedy spray and cream. The cream has speeded up his recovery on his bottom, which was so very tender-ouch! It has remedied in just a few days almost entirely. Hope that it continues. They also gave a different medicine. Even the nurses started to use the cream, as they saw that after so much time he just was getting worse. You cannot believe the recovery rate.

I also credit the Protocel for his more rapid healing. They have even asked us to bring in foods for him, as he needs to eat more, or they will have to put the nasal feeder back in. So he asked for fruit cocktail! He's been eating mashed potatoes with butter and gravy, spinach, ice cream, chocolate pudding, pears, peaches, ice tea, juices, and nutritional drinks. They are counting his calories. He only started to eat this past weekend after not eating for over 2 weeks -except for 1 time with the speech therapist when he had a little applesauce and ice cream.

So, tonite he actually started to 'argue', (in a very subdued way):)!!!! When he does these things, we look at each other , give thumbs up, and smile broadly. You know, starting to argue means you are feeling better. hahaha ...and today he started his foot movement. He does this when he is getting ready for something. He is a foot 'wagger'. It was great to see this come back as well.

He also couldn't get comfy in bed. Also a big thumbs up! It is because he is feeling better and way more aware, remembering more every day!!! He thinks that the whole situation is weird, and I would too if I were in his shoes. He does not like being in the bed, because he is so awake and aware.(smile, smile, big thumbs up!!!:) ).

His situation is still very precarious, this we know. But, as long as he wants to get better and progress, we will give him the best environment possible for him to heal and feel better. Statistics, shmatistics, there is nothing to do but support him!

If I do not post in a while, know that the pace is so very hectic. A change will no doubt produce a host of other challenges. Thank you for your continued prayers and support. I know that we cannot predict the future, but God is directing the show, and I can do nothing less than to make the most positive environment for him no matter what.

Good night and God Bless.

ps- I have been speaking in Russian and Spanish to him at times. He speaks and understands both. He responded in Spanish, and used some Russian words as well. Gotta' stimulate the left side of his brain!

"How are you getting me there?"...and meanderings of my mind...

Ups, downs, all around. I am amazed at the phenomenal people in our lives. People who care, and support, and love. "What can we do?", they ask, over and over again. And I am super proud of our amazing children. Teenagers being teenagers can give any parent a run for their money, but We are truly blessed with loving kids who want the best for the family. Tough growing up.

My youngest, # 3 , is and always has been an above average student. He has always been one of the smartest in his school. And if absent, he doesn't miss a beat. Does 93-97% and 97-99% above the average student in the US in reading and math sound wonderful to a parents ears?

And #2, what a highly compassionate and sensitive individual. Her creative writing has been evident since she was a youngster. She marches to a different drummer, and is the easiest going when she has enough sleep. Her favorite hobby is probably reading as we always have to ask her to get some sleep, she will read all night long if she has her hands on a good book.As a youngster, you could take her house hunting all day long without a peep, her stamina is amazing. And as an infant, she slept through the night at 12 days old, I thought that I was in heaven:)

#1, is, well, #1. She is a true first born , 'take the responsibility upon her shoulders' gal, who is no nonsense, yet very forgiving. Her heart, like her siblings is filled with golden love and generosity. A constant giver and multi-tasker, she does the work of 10 or more. Like her Mom, art soothes her soul. And she loves antiquing, and is a great companion for doing things. She will keep going 'til the job gets done.

We are the average family, with our ups and downs, laughing, joking, fighting, apologizing, forgiving, then starting all over again. I feel so very sorry for those families who can not tolerate emotions. I want on my tombstone to be written, 'She wore her heart on her sleeve.....and that's a good place for it to be.' The latter part of the phrase is what my neighbor /best friend from my last house used to always tell me when I would say the first part. She is an amazing person, a double amputee from diabetes, in her 70's, and the most grateful individual you could ever find.

God has always placed the most amazing people in my life...in our lives. You know, I lost my father when I was 22, soon to be 23. I was devastated. He was my first Valentine. When he died, I wrote a poem, "to My First Valentine". The local paper published it . My Dad would always write letters to the editor, etc, to the paper. Around town, when people would hear that I was Nick's daughter, they would always know who he was and say something. If they liked what he wrote they would comment positively. If they were opposed, they would say, "Oh, so you are Nick's daughter", either way, they respected him...so many people knew him. When he died he was the President of the library board. I would come in to the library years after his passing, and they would check my books out, see the last name, and remember him with such kindness and admiration. I felt as if my father was continuing to give to me through others' kind words about him. It helped me through my loss.

When my very unique and loving Mom left us in '99 I was then officially an 'orphan'. I miss talking to my parents. In our family there was loving and laughing, and fighting and apologizing, and forgiving. It is the cycle of things.Our Russian/Byelo-Russian background is colorful. People are colorful. I have always had a happy childhood, and I always will. I know that with all we go through, our kids will do the same. My Dad would always be proud of when we stood together, even if it was against a parent. It showed him that we would always be there for one another. And we are. We are not perfect. Who is? We all all very opinionated. We all different, and yet we all hold good strong values, and want to do good in the world, and for the world.

I watch our children grow, weep, learn, laugh, fight, and forgive. They tell the truth, even if it is not something that we want to hear. They fight and scream, then laugh, hug, and kiss. They look after each other, and now I see them standing tall, being there for one another, even between the arguing. Two strong , good and stubborn parents make strong, good and stubborn kids.

It is a shame when someone not privy to closeness looks in and sees only the bad. My Mom always said to look for the good in others. I pray that our children will always look in and see the good. I pray they they will learn to be less or non-judgemental, continue to be forgiving, and compassionate to others. Just walk a mile in my shoes...that has come up a few times in our lives very recently. I pray that when our children encounter these people who think that they know better than the loving interior, that they will continue to forgive and go above such poorly directed souls.

So, he asked me this morning, "How are you getting me there?" So I told him. I told him again about the amazing support and love in our lives...the family, friends, and even acquaintances who have been touched by my husband, or a friendship from one of the rest of us, and be so very giving, kind, and generous in spirit , support, and love. Forgive me my blubbering and repetition. Is this not what God wants us to see in our everyday lives? With all the hecticness in our crazy worlds others have been inspired by the stories of those who are willing to go out of their way to help us. Wow.

To everything there is a reason under heaven. I have always looked for these reasons with events in my life that have occurred. It brings me peace in understanding in dealing with these hard times. It shows one who their friends truly are, and those who espouse friendship, yet understand not a thing about it. Ups , downs, all around, God give us all mercy,strength, and grace. Thank you for the people in our lives who help us through the tough times. May they always be in our lives, those who are emotionally involved, who support us, and bring out the best in us.

God Bless us all.

xo Lydia

What a Day....

So, I got to the hospital yesterday and slept over night. Yesterday was another hectic day. Do I even remember it after today's blur of events. I cannot believe how my mind is clear and I am doing everything that I need to do. Is it overdrive, or am I more healed from the Lyme disease??? Guardian angels are certainly with us, and I strongly feel that Ken is meant to do more here, even though we know not for how long.

So this new room, as I stated, is like a hotel room. What a difference these little amenities make.


Yesterday, I walked into the room , went for my notebooks, and Ken asked me what I was doing. I told him that I was getting Michael's number to call him. He asked me why. I said that I was going to ask him for help. It was as if we were talking in our house. He is now conversing with us, asking us questions, offering up statements, responding to the medical staff. His sister came in, saw this, hadn't seen him in a day, and was bowled over. And he was tired, but was up for 4-5 hours early evening continuously interacting, w/a couple of tiny snores in between. Wow.

But, last night I slept at the hospital again, and he kept me up til well after 4:00 am. Nothing I said convinced him. He moved , and squirmed, and moved, and contorted his body to slink as far low on his bed as possible to try to reach the catheter, poor baby. He even said at one point,"Aw, come on!" I laughed. Kept reaching for his hand to try and let him know that we had to sleep. He finally fell asleep, exhausted after about 4 1/2 hours of this squirming, and multiple nurses and aides coming in to redo his restraints . If he didn't have the restraints, he would yank out his feeding and catheter tubes. This would be painful, and would set him back...

I worked so hard last night. Ken is the consummate athlete and is very adept. Unbelievable. Well, I tried to sleep through a few awakenings and 'tending- tos' from the staff. It was a couch that turns into a bed. Not great cushioning, but far better from a semi-recliner in a cramped room with more monitoring.

This morning, was an abrupt awakening. Didn't get a chance to do my morning count back and prayers. His internal medicine doctor came, and suddenly the man was extremely abrupt, curt, and very non-informative. I walked away to the family room, very upset. I cried. What had I done to receive this reaction? Discrepant information from Ken's oncologist last night and this doctor- who, til this am was quite kind and easy going. Calmed myself down, talked to others to create liaison people as I do not want to get upset about this lack of communication. This is the doctor who went out of his way to make things easier for us by bringing us to the Cancer Unit for a calm room. ?????

I asked myself,"Who is putting pressure on this man?". Of course, I did not appreciate being the brunt of his frustration. Later found out that he was under pressure, meaning, from someone in the hospital. Maybe even for getting us into this unit. And, I think that 2 weeks is the hospital's initial payment period from insurance. Suddenly I was feeling great pressure to move Ken, as he is doing better. Of course, I have been asking about how to transfer him since ER! Anywho, not to go into so much detail about all of this, but things started to move.

The plan is to try and get him into the top Rehab. hospital on the East Coast.Hoping that he gets accepted, and that insurance allows this.We would at least like for these experts to see him. We know that this may not work out.So many little details. Met the social worker for the cancer unit who in a very short period of time did so much. Another head nurse suddenly started to get involved. Did I mention that the VP of nursing is the daughter of my Mother-in-law's friend? No, I did not ask to speak to anyone. Just asked what her last name was, as I had forgotten it.The connection was made in a very innocent question. Amazing. Don't care. Just wanted to move on to do the best for my hubby and family. After all, our situation has changed drastically in an instant. Asked for a patient advocate after the am doctor mis-communication. A doctor who cannot answer simple questions as to tests being performed makes the whole process harder. We surely understand the gravity of his situation, although some may not think so.

A lot of confusion about the barium swallowing test.... but, today Ken finally had it. Yesterday his oncologist told me that he had failed it. I was totally confused, as he hadn't been taken yesterday to have it! When I asked his in house doctor about it, the information received was less than concise, and absolutely did not jive with what the oncologist said . Lack of communication wrapped up in this matter...not answering questions, being cut off when asking my question...total confusion .

KEN had andPASSED THE BARIUM SWALLOWING TEST today!!! This evening, a tray of food came in for him! Yoo Hoo! He tried tiny tastes of 'corn on the cob' , gravy, a thickened soup, ice cream, and ice tea. Don't get so impressed, it all equaled less than a teaspoon. He had some applesauce and ice cream for a speech therapist test 2 days ago. Before that, Thanksgiving was the last time that he ate any form of food other than the nutritional drip. ( He threw up 3 times on T-day).

Well, his creatinin level has based out at a reasonable number, his chest has been clear. A little congestion here and there, but lastly, it was clear. The Vena Cava Filter is in place helping to prevent most or all possible pcs. of blood clot that may have been missed, or that may occur, for the lower part of the body. They removed him from one of the anti-seizure meds, which they feel caused his platelets, or mostly caused his platelets to continue to lower, and I was finally allowed to start giving him his Protocel- powerful antioxidant nutritional supplement that he takes. They will not use the feeding tube for this, but at least I can administer it.This is what he would want.

There was talk of a PEG- feeding tube into the stomach. The Dr. who does this procedure said that because his platelets were down, she did not recommend it at this time. This can change, and may have to in order to transport to a rehab hospital or facility.

I do not want him to see his current oncologist again. He was not even willing to look into rehab places closer to home for me. Told me to ask the local radiologist. Do you think that I have enough to do?...and my kids....???the home, work, the economy, endless paperwork.... I would think that after a couple of years of being his doctor, that he could ask one of the gals at the front desk to do this- even if just to humor me- as he is not very supportive in general. Another doctor/personal friend of 20 years himself offered on his own, but we are putting that on hold to try and get him into the best rehab place here , where this friend is affiliated.

Prayers for the transitioning and insurance to go smoothly, transportation to be paid, etc, would be greatly appreciated. Things , as of this evening, seemed to have 'smoothened out' quite a bit, with tunes changing.I hope that this trend continues. There are so many amazing people here, who are quite compassionate and helpful. I am amazed at how unbelievable most of the staff have been. And I am extremely thankful for this.

And, the support, love , prayers, aid from friends , co-workers, family , is simply mind boggling.
My husband is being thought about, prayed for, visualized... by hundreds and hundreds of people. How lucky is anyone to have so many people in their lives at all- let alone so many to cheer him and us on???

There have emerged some amazing individuals throughout all of this . More on these fabulous people later...And of course support from close family and friends to us all. Jean, I know that you understand all of this. The wheels are turning constantly. I am so very, truly humbled. Is this not what life is about? I really like his neurologist. A lot. A sane, informative, helpful, hopeful, concise w/information doctor. I have liked him from the beginning in ER. If I didn't have him, I don't know if I would be dealing with this all so well.

Good nite, and God Bless. xo Just, Wow.

Another Move...

So, he no longer needs a monitored bed, so they moved him to another room. They were able to get him a room in the cancer center at the hospital, which is like a 5 star facility. It is like a hotel room. They even have a menu ,w/ of course, room service. It is large , w/ a couch that opens up to be a bed, a frig, a large bathroom with nice shower, nice armoire holding the tv, desk, ...and more.

The neurologist was happy that he was progressing. He would like things a little faster, but his bottom line is that he is progressing.The internal medicine doctor recommended the cancer unit, as he can rest well there.I had told him that I did not want the negative energy from the few nurses who seem to think that he cannot hear them, or who just want to depress him.

When he got there he said rather forlornly, "well, I guess the situation has changed". I think that he meant it in a serious tone, as if it was for the worst. But, of course, he is progressing daily. I am not sure if he believes me. Of course it is all serious, but why would I depress him- how does one heal, w/depression, or with hope?

Although another nurse asked me if I realized how serious it is. Duh! He is not on life support. And even when he was, he was breathing w/the machine. It was not done as an emergency, it was done to let him rest so that the seizures would stop, which they did. And the gal was very sweet, but why do they think that this is good for the patient who has enough depression to deal with over such a situation?

To me, it is a no- brainer. If this is the card that is dealt, we must deal w/it. So, to create the best case scenario, God willing, we must create the most hopeful, positive surroundings. Duh! That is what I would want to try to heal. If his time comes, I want it to be loving and full of hope and caring, not worry over the mountain of what he has gone through. He was tired today, but talking and awake for a very long period this evening, and at various times of the day.

His big uncomfortable issue is the awful rash that has developed on his bottom. The tube feeding and anti-biotics, and a reaction to a type of pad they used before they just went to cotton, creates a very loose situation down there. My heart so goes out to him,poor baby. I have helped them quite a few times. It is even difficult for the nurses and aides, as they feel for him. But, I think that they are scared to hurt him, and might not be as thorough as is necessary to rectify the situation. I have 3 children, after all, and once a mother always a mother. My mothering instincts want them to be gentle, yet thorough. Seems like he may have a fungal reaction, poor baby.

As soon as he swallows quite readily, food such as applesauce and ice cream, and consisitantly, then they can remove the feeding tube, and his bottom situation will heal. I am so worried for anything opening up from the rash and causing infection. He might need a stomach tube. And to transport him, he has to be eating, or have the stomach tube, or that tube and eating together. They will not transport with the nasal feeding tube.

So tomorrow they will try to test his swallowing w/a test(forgot the name). It will take a half hour. He must respond quickly and consistently, for them to remove the tube soon.

He LOVES talking to his children by phone, and Alex seems to elicit great talking in him. He wants them to see him 'doing well', this I can see. He talks a lot, and trys very hard to be'together'. Ingeneral, I think he is trying to 'act together' for us. ..trying to look as if he is dealing with it. He does get emotional when he hears more of what is happening, as he may forget some aspects here and there. I slept in the room last night, and basically did not sleep much at all, so tonite I came home, and will go back early, as I do not want him to feel as if he has been abandoned. But, I so need a good sleep.

So much has happened, yet it is late and I need to sleep. EEG was good. MRI showed the extent of the stroke. But , he is beating so many odds. My great Aunt Betty called me today. She is an amzing 95 year old/young???:):):):) She said, "Never, never,never give up, Lydia". I am in agreement. And in our family we have had quite a few miracles. So , having the choice between hope and despair, I'll take hope any day. And, we'll cross bridges when we come to them. I have to go by my instincts and family's input, not by others' who don't know him from a hole in the world.

Alright, goodnite.

If anyone knows of any legitimate organizations who can help with medical situations, I would greatly appreciate it.

ps- vivian, one of the very nice nurse's aides today reminded me of you with your hair color and pretty face:) I was amazed at how her hair and makeup looked so good so very early in the am. Can you tell that I am a late night person? hahaha

EEG , Brain MRI, and a Shave

Ken with Lara, at his surprise 55thKen and his family- His Mom is in turquoise on the right- Happy Birthday today to Mom/Gma

Ken w/Alex at the club
That's what he had done today. Still don't know the results of the tests. And the two times I called him up to check in on him he was sleeping. Had to run around today taking care of banking and such.His neurologist said there was not much progress since Fri.. That's when I told him about yesterday and this am. Then he ordered the MRI. Hopefully all will still be clear, and it may help them assess the stroke better.

One of his nurses this am said that he was awake, lucid, interacted & cooperated well. She was awfully nice. Some nurses just have a way. I told her that he already had some miracles, and she told me that hopefully he would have another one today. I like her attitude.

So he was very tired from all the activity today. He woke back up this evening . He was happy and smiling when # 1 called him.
Brain patients need much rest. I pray that he continues to interact and respond to the medical staff so that they can talk therapy and we can bring him home. He is just not ready to be w/us yet. He is still so very weak.

To all my family and close friends,near and far, thinking of you and your texts, calls,comments, and emails, etc..You all know who you are. You keep us supported and w/ warm felt good tears in our eyes and plenty of love in our heart.And even if we don't all connect, I know you are all there and it makes us feel so good. We love you so much.Thank you.

And to my fellow blogger friends- wow- you lift me up. Amazing that people who have never met can hold so many warm thoughts and prayers in their hearts for those who they have much in common with in the art realm...or just the world 'realm' . Your comments and emails blow me away as well. Thank you.

I got a lot done today. Tomorrow will be long and busy as well. Love to you all. If I am not able to respond back right now, please know that I want to, and hopefully you will keep updated w/the blog 'til we can catch up some more.

PS- I totally forgot to tell you all about something. So, those who know Ken well, know that his all time most favorite artist since he was a teenager is Leo Kotke. He plays mostly acoustic guitars( goes between reg. and 12 string, and probably something else). He is in his own category music wise. He's not rock, or country, or jazz- a type of folk guitarist, with much else that is hard to explain, and not really a folk guitarist.

So, while in ICU I thought to start humming my favorite song that Leo sings, Little Martha. It is on my playlist. It is uplifting and positive.Then I asked to play it from my blog, which they allowed, but while I was about to access it, #1 stated that she had Leo on her playlist- and lots of him. But, when she had to take her laptop, I got the idea to pick up a little cd player that I could play his cds on w/ some sort of speaker.

While mentioning all this to one of his lifelong friends, Ardie, who is a professional techie, and has been since forever, Ardie stated that he wanted to send one. So, instead of the little Walmart one I was going to look for he sent a very nice 'little' boombox, and 3 Leo cds! So, Ken listens to Leo all day long, practically, in his room. We may be a bit Leo-ed out once in a while, but Ken loves it. He has verified this multiple times. And he also has agreed to go to a Leo concert w/the 'kids'. #s 2 & 3 have never been to a Leo concert. I want to give him things to look forward to.

Every once in a while, Ken invites some friends, and we go to a Leo Kotke concert. He usually plays in fairly intimate venues. He is a fabulous performer, and if you are spatial , just the least, or enjoy very funny banter tangled in a web of intricacy, all while entertaining the heck out of you, then I highly recommend seeing him in concert. Ken has met him for autographs more than a few times, and is his biggest fan, without being weird or anything.

So, Leo, if you ever get wind of this, he sure would love to hear from you. haha:) You might just help to save his life.

Goodnite,

Ken Update

(1983)click on photo to enlarge

So much to say, but it is late and I am tired. We, Ken's family, see improvement every day, but he is not responding consistently to the medical staff.

Early this am he yanked out his nasal feeding tube in his sleep. His hands have to be tied down . When I left him last night, I told them that I was leaving and that this had to be done. I told the head nurse. It did not get done. I am upset. The head nurse said that our nurse determined that he didn't need it.This is BS- because they are the ones who have always told us that the patients do this often in their sleep, and that is why they do it..... I told them it had to be done. I think that the head nurse screwed up and blamed it on his regular nurse.

Then, the nurse who was his nurse when he came to the new room (he left ICU yesterday), when I went to meet her last night and to tell her that he gets cold, and that his right side hurts from the cancer when he is on that side, started asking me questions about resuscitation, etc. That's fine. But , when I told her my answer she started to push her opinions on us regarding his chances with his cancer and all. The nurse! When I went home, I was upset. Today she was his nurse again, and she started again. I clearly told her that the family supported him and his abilities. We want to give him a chance. She doesn't even know him.

Last night Lara spent the night w/him. She told me that his nurse this am was yelling at him. It was that same nurse. Then , she continued to push her opinions upon my hubby's Mom and sisters, talking about how serious his situation is and ALL the things he has against him, IN FRONT OF HIM!!!!!- and not in the same way that the ICU nurses spoke with him.

There is no one who knows better the possibilities of my husband's circumstances. And before his brain surgery 3 yrs. ago we talked about all of this. It was uncomfortable, but we did it. He would not want to be a vegetable for life, but he would like to have a chance. And I must use my instincts. At this point, I would like for him to visualize the healing and to be hopeful. There are many miracles that have already occurred. And I will be darned if I will not give him a chance.

I will call some people at the hospital tomorrow to discuss these things. The neurologist stated, that as long as he progresses, even if slowly, this is what we must look for. With his brain radiation it just may take a little longer. I will ask that this nurse not work with my husband.

My husband hears all. He has conversations with us. He wanted to go to the bathroom last night and said so, w/a 4 word complete sentence. He started to put his leg off the bed. My daughter told him not to.

I pray that God will lead the way, and will not let him suffer needlessly. In our family, we like to prove doctors wrong, and we do. We have done it for serious conditions. I pray that this will be one of those times. I cannot do anything less than to give my husband his hope and a fighting chance.He is an athlete, and a very good one.

Keep your eye on the ball Ken.

No More 'Tupid Teenager....

So my #2 is 20 years old today! #1 said that that makes me old as dirt. hahaha # 3 is 14, so maybe I have a little time.

In our family, our tradition is to wake up to cake and presents, because when the kids were younger, Ken worked 'til late at night. You cannot ask little ones to celebrate anyone's birthday at 10:oo or 11:00 at night. So, it became our tradition. Only today I sang into the phone, and Ken was asleep at the hospital. #1 made cupcakes with our special homemade butter cream frosting. It wasn't what Lara expected, but then, having her Dad make it through Vena Cava Filter procedure, was a pretty good gift. Just wish his situation was not so precarious.

Happy Birthday to my Butterfly Catcher. I love you baby, Kind and Gentle Princess Larissa................xo

ps- Ken was a bit emotional today, and of course was none too happy about his surgery procedure. The Dr. has been doing them for 30 years. It is a prophylactic to help prevent any blood clots from the lower half of the body. The nurse found him trying to get out of bed this early am.

Oh , yeah, and he said "luv you" to me today. He melted my heart.Got lent a book,A Stroke of Insight, by a brain scientist of some kind, who ended up having a bleeding stroke. It is so interesting, talking about what it was like to be in this other world. It also lists 40 things that were so important to her during this time. Don't remember her name, as I was lent the book from the stroke specialist nurse just this evening. Really very interesting.

He is off the heparin(blood thinner), and as soon as a room is available, he is out of ICU , as he is not sick enough to be there. They are looking for a room and one of those monitor beds (forgot what they called it). His face looks great. Everyone is noticing how plump and colorful his skin looks. Beats that ashen vomiting look.

Thank you all!!!!! xo Lydia

Much MOre Aware...

...Much more aware, but this also makes him vulnerable to his emotions. He said that he understands all. Some words come out. Others try to form.

Tomorrow he has a surgery- Vena Cava Filter- to place a filter in the vena cava.Because he is so weak, and because they did not find out where the bloot clot traveled from, as it would be unusual to form in the lungs, they do not really want him on blood thinners, because...if he falls it would not be good.

He is none too happy about the procedure. It will take about a half hour- 1 hr.. They will make an incision, and place a tube inside. This 'tube' will deposit the filter in him. Then they remove the tube.

All are tired. Scared of a very hard life.What have the last 3 years been? A piece of cake? Praying for more ease.

Kidneys are now good.Maybe all a blessing in disguise. We shall see.

xo Goodnite.

Wed. Update

So I woke up and called the ICU, gave my password, and was told that there was not much progress from yesterday. Driving in to the hospital I was hoping that it wouldn't be a meltdown day. I prayed to God loudly in the car, "Please, I am praying big prayers!"

I went into his room, washed my hands, sat down near him, said Hi Ken. Did you see Dr. S? He answered me in a deep, low voice, very distinctly, "NO." It was then that I realized that he had been extubated. He was off life support! I couldn't believe it.I was so very excited that I went to tell the nurse about him speaking. Everyone at the desk was excited.

We had a lot of conversation during the day. His voice does not sound like his real voice- that's from having the respirator tube in his throat. I asked him what his name was. He answered Dave.(We have a friend named Dave). The nurse corrected him and told him his name. She gave me the thumbs up outside the room.

The next time that I asked him his name, he told me that his name was Alison! That was right after his sister Alison left. I told him again who he was. He responded with little conversations as to his comfort -ex. are you cold? yes....are you moving your feet because you are uncomfortable. No. Are you moving them because you are exercising them? Yes.........................

Then when one of his other sisters came, she was in the room alone w/him for a little when he started to cough and dribble out junk. She wiped him w/a towel and ended up dragging out a lot of junk. She remarked about having a lot of crap in there, and he laughed.

The physical therapist came and worked w/him a little. She then told him she was going to have him sit up. I thought to myself,"What!?" I couldn't believe it. He responded to some of the commands. Then she said he was going to stand up. I couldn't believe it. She put this big, thick leather belt around his waist snugly, and pulled him up from the belt, while the assistant steadied him from the side, and me by his shoulder. His head hung limp on his chest. She told him to lift his head. He could only do it twice. She said that he moved more spontaneously, than by command. They want to get patients up as soon as possible, so that there is less chance of a blood clot.

Now that he is off life support, they want him fully awake for a couple of days, then they will talk therapy. That's when he will be moved to rehab.

I pray that he will have no digressions, because he has very far to go. He could not stand being like this for an extended time. He overheard us talking about what he has gone through, and" and all this on top of his cancer", and he looked like he wanted to cry. I think that it was a lucid moment. He is upset and sometimes confused by all the tubes and cords, and wants to yank things out. One arm has a slight restraint, so that he cannot reach too far. He shows more discomfort, and has pain on his right side as he had before.

He was very weak for the month before w/his kidney problems, after he got a bug on top of the chemo nausea, vomiting for over a week. After that he would feel crappy, then vomit while taking a bite of dinner. But, my hubby is an athlete, ...and a very good one. Even with the vomiting he would go to work out for ten minutes here, and there.He did push himself too much, driving to and from work (a distance), teaching lessons, (although he started to get help with the hitting as he directed).

He is already a miracle_ falling, going into seizre,then having multiple seizures, having a stroke, a touch of pneumonis, a blood clot in the lung (one of the worst places to have one), kidney problems, all on top of stage 4 lung cancer. He was diagnosed in 2006. Had brain surgery, whole brain radiation, chemo, chest radiation, clinical trial, then just had 4 more chemo. The last one was too much, and he got a bug on top of it. He has been living with pain since last fall. And he was going to work, although lately couldn't do much.

I am praying for BIG MIRACLES LORD!!!!! His situation is still so very precarious, and his, and our lives, have changed so drastically, so quickly. But, we moved so very quickly when the initial fall occurred. The hospital and workers have been so very good.

And we are blessed with so much love and support from family and friends from around the world. I am just blown away by huge acts of kindness , support, and help.

Thank you all for all your prayers, emails, texts, love, friendship , and support. We love you.God Bless.