History

Monday, November 24, 2014 8:45 AM EST

The trees once again stand naked to face the cold windy days and the ground has been covered with the first dressing of snow of the season… The days of summer are but a memory which still seems blurred… another birthday has come and gone and Thanksgiving will arrive in mere days… The Christmas tree stands undressed in the living room and will await my hanging all the beautiful old ornaments from years gone by… ornaments from each of you when you were small.. Treasures found as you grew older and a new one, for the second year will be added in your memory …

I am well buddy boy…no need to worry~ My days are busy working and sewing… even as time passes your presence is with us… We speak of you every day it seems… G would have loved.. G would have been cracking up.. G would have.. do you think G.. what do you think G would say… and on, and on… Grady and Shelby remember you… remember how Gary and me used to cuddle on the couch? Where is Gary any way Nanny? Is he coming home? Do you think Gary loves his garden?

Some days.. I just feel so sad.. I just miss you… your laughter, your onriness… your silliness.. but most of all… our conversations…your sweet and brave heart~ having you sitting there sleeping in the car beside me as I drive… haha…

We will miss you this Thanksgiving G.. Although never your favorite holiday as everything revolved around food it seemed.. and football.. all day football.. your favorite thing… Your Christmas wreath has been ordered and tomorrow I will order your Hospice ornament… things have changed allot G… Thanksgiving is no longer here at home… no big ole shopping trips and chopping and baking… I find I don’t miss doing that stuff anymore….these things are left to Ashlee now buddy…

As much as I wish, long for you to be with us.. right here… and sometimes I feel so MAD… I am reminded of what was your reality and thank God again for His mercy in your life… calm is restored as I know you are with Jesus now and I know you are ok.. for this… I am thankful…

Sunday we will ride in the Christmas Parade in the covered wagon of Uncle Don.. you would love that buddy.. tossing out candy.. laughing… we will toss some for you along the way…

We love you and miss you so much Buddy Boy… but … all is well…all is well...

Happy 2nd Thanksgiving in Heaven G

Love you~ Momma

Thursday, April 17, 2014 6:00 AM EST

We are well in to the week of Passover coming upon Good Friday. Today is Maundy Thursday which commemorates the last supper of Jesus and his apostles. The promise of Passover is that God is there for each of us just as we are. With our challenges, doubts, failings, burdens and shortcomings He is there and there are no exceptions. There is no test beyond wanting, believing, accepting that He is Lord and Savior. Just as the Israelite s so many years ago were freed from Egypt whoever wants to be free and saved is welcomed by the Lord.

“Believe in the Lord Jesus, and you will be saved.” Acts 16:31

May you have the most blessed Easter and may you find Peace and Salvation~

Happy second Easter in Heaven G.... we love you~

Godspeed

Saturday, March 29, 2014 3:28 PM EST

“Don’t cry because it’s over, Dr. Seuss advised. “Smile because it happened.”

This week marks an unwelcome and rather strange, at least to me, anniversary.. a significant date..
The calendar says March 24 is the day that G grabbed his wings and took flight… reality told me it was Sunday….maybe the date for whatever reason really does not matter to me…it is the day…. Perhaps in time the date will hold significance… but this year… it does not…the calendar can say whatever it likes…

For me personally… Thursday was the most difficult day…. It was a year ago that I got out of oz while the getting was good… the moment Sogawa made his flawed decision I knew it was my chance to grant G his most desired wish and get him out of the shackles he had known for well over a year and get him over the three rivers, through the woods, to the back of the lake… home….. As Rachel and I so gently packed him securely in his memory foam cocoon for the 4 hour ride… I knew in my logical mind that this would probably be the last time he would see Pittsburgh… I simply prayed that God would allow me to make it all the way home.. And not take G as I drove our familiar path… as we reached the bottom of Montefiore Hill as we called it… G was already sound asleep and for a moment I wondered out loud.. WHAT AM I DOING? I picked up my cell to call Costa to tell him I knew we were making a potentially fatal decision and to ask him to meet at at the ED as I would bring G back……I knew he would. As I looked at G laying there so peaceful… I put the phone back down.. and just held his swollen and bruised hand. He had spent nearly every hour that he was awake every day of the last week begging to be taken home….

We were well across the Ohio River when G awoke… where are we Momma? We just crossed the river buddy… all is well… Ok Momma… I love you… as we drove G was completely lucid which had not occurred for quite some time. He told me about his dream of Tosha.. He dreamed that he was holding her in his lap again.. it was so real Momma… back asleep…. A few miles later… Can I have a cheeseburger? Uh…. No Buddy… no cheeseburger.. I will get you an ice tea ok? Ok…. Of course, that was not to be… the ice tea would not be able to leave his stomach… the rule that had been in place for months after many painful lessons... Nothing goes in.. We had to hold fast .. G talked to me about his sisters, Jason, Andrew… he talked about Grady and Shelby… Will Chelsea be at home? Momma… will the boys from the fire department be there to carry me in… No not this time buddy… I will carry you myself.. All is well.. Ok… don’t hurt your back

Twice I pulled over… it appeared that G had stopped breathing… Panic wanted to set in… but thankfully, my mind stayed calm… head to the nearest ED? Or keep driving… Keep driving… then once we make it back to our neck of the woods.. if the Lord had taken him during our journey I would head to our local ED…. A constant argument in my mind… Should I call Kareem? Should I call Costa? It was laid so perfectly on my heart… get G home…We made it …G was again awake… we stopped by his fishing spot…. We talked about the lake…

During Gary’s Journey… everyone knew the rules.. not one tear in his room… no fear, only courage and fight, confidence that We could do this.. and we did.. over and over and over again… the other rule… no looking back… make the best decision for G and dance with the music that it brought… no second guessing… as G and I looked out over the lake with only the moonlight shining down… He said… thank you Momma for getting me home… I just need to be home… no looking back

The days that followed were the most difficult of my entire life…. Be strong, choose courage…

As I looked forward as this past week approached… I had no idea what to expect.. How would I feel? What should I do? Will anyone remember? Will anyone forget?

I want to share that our family is doing well…. Life brings with it a certain realization that it is not going to stop simply because the world came to a sudden end…there are promises and hope on the other side of the darkness… on the other side, there is light…

The day most certainly will not arrive that G is not missed and the hole in my heart will never again b be filled. I have learned that it will not remain raw but rather scared… just like G was… and just like G I find blessings in each day.. hope… there is joy… there is sadness… I have come to realize the Joy brings so much more light to the life that G lived.. the courage with which he fought, and the humor he always seemed to find.. no matter what…

A year has come and gone…. A year….

“Don’t cry because it’s over, Dr. Seuss advised. “Smile because it happened.”

Godspeed

Monday, March 17, 2014 9:22 AM est

"St. Patrick's Day is an enchanted time -- a day to begin transforming winter's dreams into summer's magic."~~By Adrienne Cook.~~

remembering today G that you always believed in leprechaun's

Godspeed

Saturday, February 15, 2014 7:38 AM EST

today I travel through the woods and over the three rivers for the first time without my co pilot~

my heart is heavy however not outweighed by the sweet memories that will always be present

some good advice from my best little buddy.... be brave, choose courage~

Godspeed

Sunday, January 26, 2014 2:53 pm est

this weekend is the 35th anniversary of the blizzard of 1978... the day before the blizzard Michelle and I were at Children's Hospital (the normal kind of day) with our little G.... his nurse (Cindy) and I were chatting and we thought it would be a great day for a day pass for him... get him out in the air a bit.....

we went a bit over board I do admit... with supplies packed for a 24 hour period (IV's etc, etc, etc - this was pre PICC Line days) we left the hospital with the plan to bring him back that night... but it was such a lovely afternoon and evening.. YES there were blizzard warnings... but uh.. it was 70 after all! And those weather guys are never right, RIGHT?

it ended with a chopper landing in the field behind our house to take G back to the hospital... it seemed so dramatic then and I was kicking myself for not taking him back as planned... but now, looking back... I would not have had it any other way.... it was his only night home in 2 years...

today is a very cold and we have roughly 15 inches of snow out here in the woods (G would love it) and dangerously cold temps are on the way for the next couple of days... the folks on the hill behind me have a bon fire going and are taking in some sledding! (watch out for those trees)

I have started to lay out G's memory quilt..... the cotton batting is in the washer/dryer getting a pre shrink... and the tee shirts, sweat shirts, Ryan Newman jacket (signed), Jimmy Johnson jacket (signed)and numerous hats are in the design studio preparing to have surgery. I estimate it will take maybe 6 weeks or so with the other projects that are shaping up in there.... I could send them away to be transformed in to a quilt... but.. I cannot allow anyone else to cut them apart~ my heart just won't let me let go of them and put the in anyone else's hands... funny... when G was granted his wings our Hospice team bathed him, removed his lines, placed a fresh ostomy dressing, massaged oil in to his tender skin and I remember saying that in any other situation in time I would never let someone else care for him in this way....... So why would I send his treasures away when I can create the piece and quilt it myself....I will post pics once completed...... I am excited to create what will be a lasting piece with G's favorite things~

today stay warm.... and pray for our dear friend Karis.... she is a warrior and an angel...fighting a great battle...pray also for the team who is caring for her and her dear family~ the terrain is rugged....

Godspeed

Sunday, December 22, 2013 9:54 PM EST

John 3:16
God so loved the world that He sent His one and only Son, that whoever would believe in Him, would never perish but have eternal life in heaven…

Christmas … and so it was… Away in a manger, without a crib for His bed… Silent was the Night when Christ was born… the Angels sang; the Sheppard’s came… following the star of Bethlehem… the baby grew to be a boy, and eventually a man… our Father, who is in Heaven… Your mere name is hallowed… it is Your will that we are here for… That we may do as You would have us do while we are on earth… until such time as we join You in heaven~

WOW… It’s Christmas. Within another week we will welcome a New Year~ I always look to a new year and wonder what the first big story will be… What will the new year hold that will simply amaze me personally~ What will the new year have in store.... I have been thinking of this year 2013 and all that has transpired… It seems almost impossible to take it all in~

Our family has been busy! Grady started kindergarten and rode the big school bus for the very first time… Shelby moved up in preschool and has become quite the little singer… Ash has been working so hard and is almost finished with school soon to be a teacher; Mich has committed to riding again and next summer will find her back in the show pen... Jason has been busier than ever on the farm and Andy has a new Real Estate company. Michael traveled to California and then up the coast; Granny celebrated her 85th birthday and I settled in to a new home out in the woods on the lake; Chelsea now lives with Ash and Andy and Charlie Bear has come home to his forever home to be with me…… And then there is Gary……

Gary.... our brave heart, our Christmas Angel....We have had to say good bye for now… And it has been painful in so many ways … I will not lie… the lessons of this life... well, for now... there is not enough space on this page to share...having faith is my personal salvation… my personal hope… For God loved us so much…so much… He gave us Christmas… Christmas is a time to be filled with Joy… to really love and embrace one another and the blessings that fill our lives… To gain an better understanding of the bigger picture.. And there is one… Oh believe me… there is one… Faith is what allows you to travel the roads that don’t appear on the map… dream the dreams that are too big not to come true… Accept that sometimes, although at first glance it may appear that the story does not have a happy ending, one must find the courage to look deeper… to see farther… to read the rest of the book. Find the courage to face the unknowns of each day with the knowledge of the known… that God loves us so much… He gave us Christmas…

The time is drawing near that we will gather, as a family, and celebrate Christmas~ we will share old traditions and add a few new ones this year.... life is about changes... nothing ever stays the same.....as long as you have love in your heart you will always have Christmas~

I love the song… Where are you Christmas? Why can’t I find you~ my world is changing.. I’m re arranging… If there is love in your heart and your mind you will feel like Christmas all the time

I feel you Christmas, I know I've found you, you never fade away
The joy of Christmas, Stays here inside us
Fills each and every heart with love

I have learned that the stars cannot shine without the darkness… we love you G… we could not be more proud of you~

If you are stopping by the bridge… Thank you for thinking of us… ~ and Merry Christmas…

Godspeed

Monday, December 9, 2013

the theme that keeps running through my mind.... let there be peace on earth......

laid G's beautiful Christmas Wreath... thank you so much Pat for your hard work.. it is beautiful~ (pic in photos)

Godspeed

Friday, November 29, 2013 10:33 PM EST

Thanksgiving…

in all honesty, I must admit I have spent most of it in a not very good mood… Odd to me… this is not my personality

I was blessed to spend this Thanksgiving with my little girl… Thank you Ashlee for all your hard work and for a wonderful Thanksgiving… it was so great to put up your tree with you… Awesome~

I have learned allot this Thanksgiving… most of all that I really need to listen to my gut and continue to do what is best for me… whatever that may be on any given day... ok how selfish does that sound???

The thing is… I have clearly learned that I am not at a point in my healing that I play well with others… I am not referring to the fact that G is now an angel… I am referring to the trauma of the past 2 years in particular but am finding the moments from the past 35 years come vividly back to me at the most unexpected times… Sometimes it may be something that someone says… or a smell, a sound, being in a place where I have been before, in a different space and time… small conversations the fill different corners of a room… I never know what it may be that is a trigger...

How I feel is NORMAL… it is to be expected... so if you are stopping by and can relate.. know you are not alone..

When a person experiences great trauma the brain takes steps to protect itself most particularly when there is not time to process one traumatic event before having to deal with the next one (over, and over, and over again for a prolonged period of time)… this protection mechanism is not something that a person controls… it is something that happens; occurs without your even realizing it is happening… Once this happens…and suddenly the trauma stops for whatever reason, the brain only allows so much data to process at a time… Again… Protecting itself as it was designed to do. Fortunately, an inner quiet voice tells you how far to venture out in the “other” world as we used to refer to the world away from Oz and when to stick close to the place where the most comfort is afforded… in the grief process.. this is known as the safe place… Just like having a safe person who is someone to whom you can say anything without fear of judgment or correction and such an important part of grief healing.. equally as important is a safe place... where one is surrounded with comfort, peace, and feels in control...

It takes time to heal when you loose someone you love… There is no getting around this… you cannot go around, over, under, or in any other direction… you must go through it… On top of that… You must find the appropriate place for all the things that you may have experienced during periods of trauma… It takes time and IT determines it's own time frame...

Again, I am brought back to the onion… This process is a little like pealing an onion… mine is a sweet Vandalia… Everyone has to find their own way of doing it and this process occurs a layer at a time… Sometimes in my case which is not unique only to me; occurring at moments not of my choosing an most often when least expected... like, while shopping at Lowes for example...

I am so deeply thankful for my girls who love me even if I am in a bad mood which is totally out of character for me …I thank God for giving them to me each and every day… and for my many friends who still love me even on the bad days and encourage me to just breath…

hugs, hope and love~

Godspeed

Thursday, November 14, 2013 12:03 AM CST

November has arrived … the first snow of the winter has graced the hills and valleys out here in the woods… there are three deer who pass every day by the office window as they gather some sweet grass to eat… a Momma and her two babies… they have grown under the warm summer sun and are now almost as big as their Momma.. I have been wondering if I should put out some corn for them for the winter…

Yesterday I found your music that we played for you in oz… so quietly, softly in your room to help keep you focused and calm during your great distress…music to be with you in the TICU at night as I slept in the waiting area just beyond your door so you would never be alone… it plays in my office… It is bitter sweet… but somehow is hugging my heart…

I had been aching, wondering what had happened to it… I just could not imagine... I knew we had not left it in Oz...it would have broken my heart to lose it… as I finally unpacked the last container that had made so many trips with us through the woods and over the three rivers and back again, there is was.... just waiting for me...it is here G… now back with me, safe and sound… All of your old friends that you would ask me to play over and over and over again… all here...

I have physical pain in my heart… it just started… it is not there all the time... To be honest up until now… I have felt nothing at all.. just nothing… I missed you every day so much that I want to HIT someone.. as HARD as I can… maybe twice... maybe Sogawa… just for you G… haha.. you would like that… but physically… I felt nothing… but I knew it was okay~

the trees outside stand naked these days… with their flesh exposed to the cold winter winds… perhaps I am going to experience winter as they do… They wear their beautiful brown bark jackets to cover them as I have kept my heart covered to keep it protected and safe… With my heart exposed to the cold winter winds I look at them all standing out there dancing in with the wind dressed in their winter white… And remind myself that they are busy at work, preparing for the warm spring sun to return so they can open up and open up their branches again... perhaps I am dancing with them G… perhaps~

I am well buddy boy… don’t you worry about me… all is well… your sisters surround me with love and they are right there every time I need them the most… I don’t even have to ask… somehow, they know.. charlie Bear never leaves my side... but, you already know that... I can still remember you saying.. when you are old Momma I am going to take care of you.. just like you take care of me… I would say.. I am counting on you buddy...

Chelsea is well honey… Ash brings her home from time to time~ But.. you already know that huh..... Grady and Shelby ask me about you.. if you are ok now? I say yes… G is ok now… they hold you in their little hearts...But you already know that too… Granny tells me she dreams about you… and that sometimes you sit on her bed… perhaps you do… but.. you already know that too… I had been so afraid to wash your favorite old quilt.. the blue one with those weird little guys all over it.... but I finally did it.. and to my surprise... you scent remains... but.. you already know that...

Each day comes and goes and each day it seems I learn something new that I did not know before… things I would have never known had I not had you… November has arrived …

The season will change… The earth will rejuvenate… November has arrived

You are always my bestest little buddy… All is well

Love Momma

Godspeed

Wednesday, October 16, 2013 9:25 AM CDT

today is your first Birthday in Heaven but not your first birthday as a child of God buddy boy and let me say.... we sure do miss you~

I am left today without the words to adequately express my heart... I was looking at the pictures of your last birthday here on earth and a smile came to my face... your room on 11 N filled to capacity with balloons, cards and wishes from so many hearts.... you slept most of that day....

today is a lovely true fall day here on earth in my little piece of the world.... the leaves are falling, it is cool and there is a light rain.. just like the day you were born... last night as I lay down to sleep I was thinking of your tiny face and the very first time I looked in to your eyes.... I can still remember the very first thing I said to you... "it's going to be okay buddy boy... we are going to get through this together"~ little did I know buddy boy how many times over your life I would utter these very same words...

we miss you G... from the depths of our hearts, from the bottom of our soul.... I am thankful in heaven you cannot see our pain... you cannot feel our hurt.... I know you are there with those who you came to love like family and you prepare for the day that we will see you again and hold you close.... today buddy boy we could not be more proud of you.... your ability to stay calm even during the most dramatic of events; your ability to reach outside of yourself no matter what and offer encouragement to those around you...

we don't have to "get it fixed" any more buddy.... for now your body is healed, whole and perfect... in Heaven with the Lord our Saviour....

Happy first Birthday in Heaven Gman... we love you more

But Jesus said, "Let the children come to me. Don't stop them! For the Kingdom of Heaven belongs to those who are like these children."
Matthew 19:14

Godspeed

Sunday, September 15, 2013 7:53 AM CDT

Sweet September…

the leaves are starting to change out here in the woods and the air has grown cooler~ last weekend the lake was filled with boats, ski dos and swimmers, with laughter and fishing… the sun was hot and the air was quiet~ I found myself reflecting on where we were last year at this time…where we are today~ and changes brought to the surface in Sweet September~

Our family had planned a vacation to the Outer Banks of North Carolina~ In January I had leased a home large enough to accommodate all of us (doggies too) which walked right out to the Atlantic and was only able to be reached via 4WD as is was so far up the beach there were no roads… our visit however was not to be~ little did we know what February had in mind for us~

It was during September of last year that I realized Gary’s Journey had taken on an entirely new path~ I became fully aware that we were turning the pages of what would become the final chapters of his amazing earthly life~ it was then that I knew I would soon have to stand by as he spread his wings to fly~ it was then, during the horrendous days of September last that I started to grieve… as I look back now I am thankful that God allowed me this insight…which gave me time… precious time with my Gman~

In the days, the weeks, the months that followed we went from worst (we passed up from bad to worse) to whatever comes after worse… Chelsea moved to Cleveland with Ash and Andy~ Mich, Ash and Michael made multiple trips to oz at a moment’s notice, multiple family conferences were held over the phone, the days grew long and the nights grew longer and G endured the unimaginable.. my Pittsburgh family Patty, Denise, Kim… I cannot say enough to express everything they did for me.. for G.. Without them, without you, praying and holding me…I am sure I would not have survived the rigorous path~ God is so merciful~

Fast forward to today~ Spt 15, 2013… so much has changed… the plan to buy a motor home and travel the country fulfilling the rest of G’s bucket list changed to where i am today living in a home in the woods on the back of the lake~G and I picked it out on the internet... Charlie Bear is part of this family now, Grady has started school and Shelby has been riding Cody (now sold)and her beloved Redmond who will come home from "horsey school", Granny celebrated her 85th Birthday, and Michael is taking a trip of healing to La~. Talk has begun amungst us about renting a home on the beach next year getting us all close to the water we love so much~ water is so healing to the soul~ It feels like a good idea…

This weekend will marks 25 weeks since G quietly flew away~ 6 months~ it is so hard to believe

When I want him back so much I just look at the pictures and my notes from last year… immediately~ all is well… Peace replaces the yearning of my heart. I know my Gman is safe and well in heaven. I know I will always want him back~
The day is not going to come that I wake up and G is not the first thing on my mind~ the night will not come that I do not say good night G and that is ok… I just say I miss you G… we are all so proud of you~ I love you~ job well done buddy… Job well done~

The Lord has been kind and stays ever close to me, with our family… this journey has been long…we have been faithful and know that for every season there is a purpose and for every change a reason which we are not to question but simply be still and know… that He is still our God and He never takes His hands off the wheel … we simply give thanks for everything we had with our G man and are blessed with today~ and continue the long process of healing one little day at a time~

if you would be so kind.. continue to lift Michael who still struggles with the loss of his sweet Karen... for Carissa, for Karis, for Maria and Greg... for Jessie~ for all those brave warriors who today... battle on....

for Costa~ Kareem...for Barb...and all the members of these amazing teams who care for their patients in a way that one has to experience to fully understand

Sweet September...

Godspeed

Saturday, July 13, 2013 11:39 PM est`

16 weeks.... 4 months.... so hard to believe...

as most are aware the entire time G was in the battle in Oz he was always in the company of his Chelsea... Toshie was there too, and always by his side but Chelsea was the pillar of strength, comfort, and a courage warrior right along with G.... as most know, when G reached the point that I could no longer leave the hospital and made the transition to living in his room with him full time our family made the decesion to let Chelsea go to Ashlee and Andy's in Cleveland to avoid having her overstressed in a very difficult situation... our plan at that time as you know was to bring G to Cleveland within a couple of weeks... over 6 months later....I brought G home for the last time....

Chelsea has bonded with Ashlee in the loss of her little buddy... she is happy and healthy and no longer doing any medical work... she is just being a dog~ hanging out with her best buddy Oliver (the cat) ... sometimes we have to make decisions that are hard for our hearts but best for those we love... we made the decision when Chelsea was home with G as he earned his wings that she would in fact remain with Ashlee... this was the right thing to do...

I have missed Chels... just having her around, her company, just being with her.... she has a comforting, old soul... I began looking for a fur baby... easier said than done... I have been apprehensive because Chels is such a perfect dog and I knew I would never find a dog who could fill her shoes.... today, I found Charlie.... he is a Border Collie/Retriever mix from our local dog shelter.... he is even tempered, very smart (he already knows one click means sit) and very kind... he loves children (thank you Grady and Shelby for being so brave to meet him at the shelter) and is very sociable.. as I waited for him in the bonding room I had no idea what would happen... maybe he would just ignore me, maybe his big ole heart had just been too broken... but to my surprise... he came right to me.. laid his head in my hands and just looked at me with his big brown eyes...all the doubts, the questions left in that moment.. and tonight... Charlie is home... his hair has been brushed, he has some new toys and is sound asleep in his new crate on his new mattress curled up with a stuffed duck...

Charlie... my new pal.... another old soul (who loves to play fetch).... a blessing with 4 legs, a tail that seems to never stop wagging, and the kindest heart....

G would have loved him....

Godspeed

Monday, July 1, 2013 10:04 PM EST

it has been raining for days.... it stopped just long enough to allow me to quick cut the lawn, trim the roses back (they growing like WEEDS) and weed the front walkway

I spent some time sitting on the back deck...
the fireflies fill the trees as the fog settles in the tree tops... the lake is quiet tonight.. there are no boats bamming across each others wakes or ski doos screaming.. even the blue heron are quiet tonight... they seem to be more of an early bird if you will~~ they fly over the house to cross the road and go down to the lake for a fresh fish early in the morning announcing their success at the top of their lungs!

...a momma deer came right up to the side yard to see if she could find anything yummy to munch on.. she had no idea I was there... I just watched her, so quietly so not to startle her... and suddenly, she saw me.. she just stood there looking at me, and me looking at her... I told her it was okay.. have no fear... she walked quietly back in to the woods

This Sunday will mark 15 weeks since G left~
sometimes it feels like forever, and sometimes like it never happened at all... I have decided that this experience is allot like pealing an onion....
everyone seems to have their own way of doing it and I believe you experience the loss of a child in layers... maybe one experiences the loss of anyone they love in layers..

I am peeling each layer off, one at at time.. some layers make me want to cry, but there are no tears... some don't really make me anything at all, just numb, some make me laugh, and some just lead to the next layer...just like an onion.. one layer at a time... I like to think my onion is a sweet vandalia ... G would love that...

G's garden is not quite done and ready for unveiling..
Jason has collected a ton (seriously) of beautiful rocks and is going to bring them out and leave the truck here... which means, another vamp of the lay out.. the fountain has not yet arrived but the plants are doing well.... when I peak out my office window there are butterflies and humming birds.. today a beautiful Red Bird was dodging the rain drops, hiding under the wooden pic nic table~

Michael will be home late Wed, Chelsea is coming home on the 4th to avoid the craziness that happens on Ash and Andy's street on July 4th~ Michael and I will pick her up at Ash and Andy's farm in Mohican country and bring home firewood for the weekend~ Ash and Andy will come home on Friday, and Mich, Jas and the kiddos will arrive Saturday.. my beautiful niece Jamie and her hubby Jeff along with sweet, brave Justice will head out to the woods on Saturday as well as my brother and sister in law.. we will BBQ and if the rain stays away hit the water then head to the fireworks at the lakeside Saturday night~

4th of July...G would have loved it...

Have a wonderful 4th of July, eat too much food, laugh, sing, maybe sneak a nap, and enjoy those who you will be with on this wonderful summer day ~ it will never come again... hopefully the rain stays away....

hugs hope and love

Godspeed

Wednesday, June 19, 2013 9:15 PM EST

yesterday I had the unique pleasure of meeting a Mom who lost her sons... not one, but two~

her first son she lost when he was only 5... his little heart had serious issues from his birth and despite the heroic efforts of his heart surgeon~ God had other plans...

her second son.. she lost when he was 35.... he has been missing for 7 years.... there are no clues or hints, reasons or understanding.... it seems impossible that a person can just simply, vanish... without a trace, without a trail... just gone

she has been following Gary's Journey for 5 years or so.... every day like so many of those who have loved us so much, she would check in.... she confessed that she could hardly take it when she read that G had earned his wings... as I hugged her she said... I am so, so very sorry that you had to endure this horrible, horrible thing that happened to your son, to your family..... as I held her close I was thinking....how does one function when their child is missing.... just missing, gone to where? no one has any idea of where he went? what happened? After our embrace I told her not to be sorry for me....there is nothing to be sorry for...through G's amazing life came so many gifts... so much knowledge that I otherwise would never have had... people who I hold deep in my heart who otherwise, I would never have met... conversations with G that in any other situation would never had been spoken... I told her I appreciate her kind words but that I could never imagine a pain worse that not knowing where your baby was...what happened..

she said she senses that he is gone from this earth~ she could feel him leave one day in the afternoon.... she said she has the comfort of knowing that he is with God and that one day... she will hold him again....

through this journey I have had the privilege of meeting some of the most incredible people on the face of this planet.. some of the most gifted physicians... and in some cases.. THE most gifted... Mothers, daughters, sisters and brothers.. Fathers and Grandparents.. husbands and wives... no matter what, no matter how much it may hurt I am so deeply thankful for the journey that has been and in a new way, in new chapters yet to be written, that it continues today...

if you stop by the bridge.... please know that you are valued in my life, in our lives and by those who you will have contact with... you may say something, or do something, or just give a glance and someone else will receive something so special from you and you will have done this with perhaps never even knowing it...

hugs hope and love

Godpseed~

Friday, June 14, 2013 6:01 PM EST

miss you G~~ so, so proud of you... all you did, who you were, and your incredible brave heart

Momma~~

Godspeed

Friday, May 31, 2013 8:22 PM EST

tonight the rain falls out here in the woods... the lake is quiet with no passengers on ski doos or boats... just quiet, rain falling, peace

yesterday they came and picked up G's wheel chair... it suddenly seemed so small... I watched as they picked it up and loaded it in the van.... G was only in the wheel chair a hand full of times and for that I am thankful.... a wheel chair was on his list of things G never wanted... I was not sad to see it go... it was clear to me that it was never part of G....

I can't help myself... I need to come to the bridge... sometimes I just look at G's picture driving the tractor out on the farm...and sometimes I read my own words from days long gone.... and I clearly see grace... not my own... but the grace shown to me by sweet Jesus....

your notes here are so special to me....almost more special now than ever before... you touch my heart and comfort my soul.... I was thinking about my beloved friends who have traversed this path that I now find myself on... my dear friend Joan from oz shared with me something that was shared with her 22 years before now, when her dear husband earned his wings... our loved ones do not leave us.. they simply begin their eternity~ we do not see them because we are in the darkness of the world...death has not carried them away...but rather has given them life.... life with power to fully know and to love perfectly... it is we who are away...one day to be with them at home with our Father... death is not a thief... but only a means of preparation...

I think how blessed I am to have had my son... that Sherry had her son... that Linda had her daughter... that Micheal had Karen...that all of us who became family in oz were so blessed to have our dear ones for so long given our complex issues... we were not asked to let them go as small children...and, so many are... regardless of the situation.... we have our sweet and amazing memories... they are like stepping stones to healing.. one little step at a time....

this weekend, if you stop by... please continue to pray for Costa... for Kareem...for Barb... they have precious ones in their hands..it is what they do..and no one does it better~
pray for Carissa who is the most amazing artist and will have surgery on Tuesday...we love you honey... for Karis who is the brightest star... you are our brave heart now sweetie, for Maria... our strong and brave eagle.... oh how you can fly...we love you dear one...

tonight... I am going to enjoy the quiet of the rain... peaceful... life giving, rain....

Thank you so much for stopping by... you are so dear to me...

Godspeed

Wednesday, May 29, 2013 7:42 AM EST

the stones are in place.... well the first layout.. there may be some slight little changes at the top once I actually see the fountain....

each day comes and I wake up thinking of G.. how much I miss him....if my mind starts to wonder WHY is this the way it is or...if my mind starts to think this is not the way it was supposed to be I just look at the TICU pics from over the past year....a calm quiet comes to me and I am reminded... all is well...

all is well....

Godspeed

Wednesday, May 15, 2013 10:22 PM EDT

the first wagon of rocks has been collected and dumped at the site that will become g's memory garden... the rocks will create a dry creek bed running down the little hill, towards the lake from the fountain... the dry creek will wind around the existing plantings and additional ones will be added.... at the bottom of the creek will be a gazing ball, in shades of blue of course, more plantings, and g's memory stones that were gifts from some very special and dear friends.... this will be a place of peace, reflection, joy and meditation~my hope is to have it all done by July 4th weekend~~

I cannot wait to see this come together... the fountain search is still on... hmmmm... need to find just the right one...

it was a beautiful night out..... mulched the roses, mowed the lawn and trimmed.... pulled some weeds and sat on the porch until after 10.....it was nice to not have fever for once... I am on my 5th antibiotic since G was granted his wings.... yesh...

the first time Ash was at this house she said this was a healing place.... I really think she was right~~

Godspeed

Sunday, May 12, 2013 10:46 AM EST

every day I begin by taking 2 or 3 minutes to read something from somewhere, always a random pick~ it always proves to be inspirational in one way or another~ I do this every day with the exception being March 24....

I did not read anything that day...... but is was none the less, a most inspiring day in so many ways.... last evening my Mother brought me a page from her daily bible study, handing to me and saying... can you believe this writing.... of course, she had no way of knowing that on that day, I had not read...she probably does not know that my daily reading is a habit of mine~ I wanted to share on this very special Momma's Day what it said...

March 24~

This is a time in your life when you must learn to let go~ of loved ones, possessions, of control~In order to let go of something most precious to you, you need to rest in MY Presence, where you are complete~ As you relax more and more, your grasping hand gradually will open up, releasing your most prized possession into My care.

You can feel secure, even in the midst of cataclysmic change, through awareness of My continual Presence. The One who never leaves you is the same One who never Changes: I am the same yesterday, today and forever~ as you release more and more things into My care, remember that I never let go of your hand.

today I celebrate being the Mother of two amazing young ladies who have provided for me, everything I have needed and so much more during the past 7 weeks of most difficult days...they are inspirational to me and the world is so much a better place that it would have been had they not been in it... I am so very blessed that they were entrusted to me.... I am the Mother of the bravest warrior I have even known....and yes.... I have had to let him go...

my good friend Patty always tells me I am a MOM.... maker of miracles....today I reflect on these kiddos that I have the privilege and honor to call my own....I could not be more blessed....

life is about change... nothing ever stays the same... except for the love of our Father....

Happy Mothers Day

Godspeed

Thursday, April 25, 2013 7:59 AM EDT

Today the sun is shining and the lake is sparkling~

today is a day of celebration~ Early this morning down by the lake, I let off those 11 balloons just as G and I had planned.... green and white.... each carrying a message of hope....

8 balloons to celebrate G's incredible life~ 1 balloon for prayer for Dr Costa, 1 balloon for prayer for Dr Kareem, and one balloon in thought, prayer and to honor a Momma in Florida who in her darkest moment gave of her precious son to save mine....

As I stood there in the cold watching them float so high no tears fell.... I was thinking of the day I took G to Oz for the very first time..... the hope was to find a miracle that could give him, would allow for him to have just one day of pain free, nausea free, bleeding free, leaking free life... to do anything he wanted to do, to eat anything at all and not pay a price for what most of us take for granted.... he got so much more....for this I am forever thankful and looking back.... there are no regrets..... the only thing I would change is the pain...

like those balloons of hope and celebration~ G flies free with the angels... with Karen and Kev, with Angie and Warren, with Gretchen and Jenna, with Chris and Jim...and so many other dear brave warriors~

to our donor family~~ simply said... we love you and thank you from the depths of our hearts and soul....

we love you G.... fly free

Godspeed

Tuesday, April 23, 2013 8:32 AM EDT

it seems that almost every day I am learning a lesson~~ spring has been showing me now more than ever, that one of the most amazing things about life is that despite it all~ life does go on.... I am keenly aware that I will never not miss G....but I am also learning that it is ok to smile again....

People who never met G have been so deeply touched by his life, his courage, his attitude and his unique journey and I am simply amazed that this person who was of such small stature and features, who suffered with grace and fought with great courage reached so many hearts.... G will forever be a part of so many of the paths of so many incredible people....so many have shared how his very special life touched their lives and changed their path.... simply amazing~ This is God at work... working through G....

A few years ago... while doing battle in Oz I gave G a little stone as a gift of encouragement.. on the stone it states Courage is not the absence of fear but the ability to stand and face it~~ he told me Momma... we have to stay strong... and that we did...

I met an lovely elderly lady this past Saturday at a luncheon at Mohican State Park (beautiful place) and she stood and asked so bravely for prayer that her Granddaughter could soon be allowed to pass and be free of her illness..I knew how difficult this was for her to request...I knew right where she was walking, the landscape, the depth.... I spoke to her and she told me her precious one is in a hospital in NY City and has been doing battle for 2 months... cancer has spread throughout her system.... I told her I understood.... I knew how hard it was for her to ask for this kind of prayer...I told her I would pray along with her.....

in the depths of darkness.... there is always light.... you just have to look for it.... I have been thinking allot about my last trip over the three rivers and through the woods to home with G.... the things he said to me are suddenly making perfect sense and will forever remain on my heart.... his falling asleep holding my hand~ his waking up to tell me what he had dreamed~ the other day...Shelby said Nanny where is Gary? Grady immediately said Gary is here Shelby as he put his hand on his heart.. Gary is in our hearts Shelby... she said.. okay

Godspeed

Sunday, April 14, 2013 7:53 AM EST

it has been only 3 weeks since G earned his angel wings.... somehow it seems like a lifetime.... and at the same time, it seems like yesterday... and again.... like it never REALLY happened at all... most of the time it feels like I just have to get back to oz.....and he will be there~

Our family is doing well. I have the most amazing kids in the world... I am so thankful for them....
our hearts are peaceful and we know that G has reached the shoreline and all is well...at the same time our hearts ache and there is such an absence....

I am discovering that some wounds are still quite raw and I expect them to be for quite some time..... there are certain things that I am not sure I will ever be able to endure again in my life, smells, sounds, sights, there are just some things a loved one should never see, never experience, never endure~but these things are endured, experienced with courage and love and oddly, make us all better and strong, smarter with an unique understanding of life, the body and how it functions.. we recognize things that others would not ever see and could never imagine ~ incredible~ I think of my many friends who are enduring this as I speak...if one of you should stop by here know you are not alone...

I am starting to understand post traumatic stress disorder~ it is going to take time.... allot of time

Today promises some sunshine which we all will welcome after a long week of rain and cold weather.... plans for G's memorial garden are coming along...I hope to be outside today picking up sticks, raking, pulling weeds... you know, normal spring time stuff... which in my world over the past many years has not been part of my springtime routine...it feels strangely odd...

Your willingness to continue to lift us in prayer is humbling, and deeply appreciated as we all are reminded that G's life was all and always about hope...not sadness or being sick, not suffering or enduring pain, not nausea or bleeding, but hope and the joy of living each day as it came.. what a lesson this amazing young man taught us all....how blessed are we that he was ours~

Please continue to pray expectantly for Karis, Carissa, Maria and Nicole and the people who love them so much and provide lovingly for their care.... they are all deep in the battle field and we love them dearly~

today... get outside... enjoy the nice weather~~ and to quote G... "have the happiest of days today"

Godspeed

Tuesday, April 9, 2013 9:40 AM EST

Each of us have such busy lives… Demands upon our time and so much we need to accomplish in just the tiny 24 hours that each day allows~ It is with this understanding of how precious every moment is that I thank each of you who have been our angels. For taking the time to join us in the celebration of G’s very special life… you have either attended his memorial service, spent time writing a note in a card, left a message here on the bridge or on Facebook, have sent an email, or a text… you have delivered fruit and flowers to encourage us, have sent beautiful gifts in remembrance of G and for these incredible acts of love and compassion, on behalf of our entire family I cannot thank you enough~~ you have lifted our spirits, encouraged us, and held us up when we could not hold ourselves….you have shared your words of what a blessing G was to your own life~ we have been so deeply moved to know that one little person, through his short life, touched so many~
You are such blessings in our lives…

It is through reading your cards, notes, emails and text that healing begins… There is a common thread in all of these lovely notes of G’s life… his smile, his sense of humor, his compassion, and his ability to always have hope… to see the unseeable, to feel the intangible, and to achieve the impossible… his courage and brave heart that was G…

I am learning that the grieving process for me started a very long time ago… I believe it was September of 2012~
I realized even at that early time after G had been in the hospital for many months that what I was witnessing was the beginning of the end of G’s earthly time… I am finding that grieving is a bit like trying to find your way through the woods… it is difficult to keep your balance and not lose your sense of direction, and to not let the darkness overtake you… It is a journey that must be traveled to find your way home~ I realize that I have joined a very elite club of Mothers who have had to helplessly stand aside as a child is released to joy and glory… I have learned that it does not matter thier age, they are always our babies~ I feel the pain so clearly now that Michael suffers and I can only imagine~ I have thought so much about my own Mother saying goodbye to two sons~
Linda, Sherry… you kind words of knowledge are treasures to my heart. You know where I walk…

It is going to take some time to find my sea legs as G would say~ I know with each new day there is hope… I am so thankful for the amazing moments of G’s life that simply took our breath away… that first dive in a pool, his face filled with amazement at Charlotte Motor Speedway, the joy the filled his heart as he and Scottie too Hottie embarked on a day of deep sea fishing, the love that filled his eyes as he held Grady and Shelby for the very first time, steak and snake bites which he loved so much, his delight in finding my new and perfect car and securing the deal~

"Now faith is being sure of what we hope for and certain of what we do not see." (Hebrews 11:1)

Please join us and continue your prayers for Karis, Carissa, and Maria who we love so much~

Godspeed

Thursday, March 28, 2013 6:13 AM EDT

Through Him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.

Romans 5:2-5

Amen~

Godspeed

Monday, March 25, 2013 6:22 PM CDT

Gary A. Howard

October 16, 1977 ~ March 24, 2013

Visitation: Thursday, March 28, 2013 from 11:00-11:59 A.M.
at DeVore-Snyder Funeral Home, Sunbury, OH

Funeral: Thursday, March 28, 2013 at 12:00 P.M.
at DeVore-Snyder Funeral Home, Sunbury, OH

Burial: Blue Church Cemetery, Sunbury, Ohio

Please join us for lunch following our celebration of Gary's amazing life at the farm of his Uncle Don and Aunt Kathy (the farm is located right across the road from Blue Church Cemetery)

http://www.snyderfuneralhomes.com/obituaries

Your continued prayers, you messages of love and hope touch our hearts so deeply~

Godspeed

Sunday, March 24, 2013 3:43 PM EST

Today out here in the woods, at the back of the lake, covered in his prayer shawl, and surrounded by those who love him the most Gary was granted his angel wings and was released in to joy, in to glory, in to peace at 1:18 pm~

Gary was born on a Sunday~~ somehow it seems just right that he left this earthly life on Sunday~~ G’s departure was calm, quiet, and controlled and we were able to provide G everything he had asked us for… For this we are so thankful… Michael led us in prayer and we hugged each other so tightly as our tears fell… our hearts are broken, but our spirits are strong…

It is so very hard to let go of someone you love so much, you need so much, you want so much~ at the same time, we are so thankful and praise God that in this day, already, at this moment in time, G has a new, perfect body… without pain, without suffering, no scars, tubes or drains, no ileo, no picc, no IJ, no femoral, no ng, no nausea~ just a perfect little body with the Lord…

Gary touched so many lives in so many different ways…
Our Hospice team wept as they were at his bedside to provide whatever he may need ~ they had only known G for 2 short days~ they were so good to G, caring for him so carefully, gently, so completely meeting all of his needs the moment they arose…

Our precious Gman is at peace… our hearts are heavy but we rejoice that he is with the Lord~

Arrangements for G’s memorial will be made tomorrow and what would be to G’s delight we are to get snow, and allot of it~ details will be posted here on the bridge~

Your continued prayers are so appreciated as we deal with the difficult days ahead and plan to honor Gary’s amazing, incredible, unique and very powerful life~

Godspeed

Saturday, March 23, 2013 4:14 AM est

Everything in my being, in my thoughts, in my beating heart drives me to do whatever it takes to care for G… he is a warrior, the bravest heart, a never give up kind of guy, who would do anything for anyone most particularly his two sisters and his nephew and niece who he is so proud of~ he is my bestest buddy…

He loves his brothers in law like they were his own kin, loves his uncle Don and his cousins from the bottom of his little heart…. G loves Chelsea… he still has dreams of Tosha… he told me on our drive home he dreamt that Tosha was with him again and he was holding her just like he used to…G loves his transplant family… each and every person who God has allowed to come in to his life~ he thinks of them every day, and prays for them… that they can be well, not suffer, not have pain, and feel good.. just feel good… so simple… just feel good… G loves ices chips... and ice cold water…

G loves his team…. Dr Costa, Dr Kareem, Dr Amesur, Dr Orons, Adam, Barb, he loves his nurses. G does not think of them as dr’s and nurses…. They are his trusted friends..

I drove G home Thursday and he was awake for a good part of the drive… other times he slept quietly wrapped in his cocoon I devised to protect his bones in our journey, curled in his blanket… we got home and in his wheel chair had a tour of the new house.. I love it Momma.. I love it…but I need to lay down~ tucked in to bed he slept restlessly, coughing, and the sounds of his now familiar moans waived through the otherwise silent night air…

before the sun was awake at 5 am he started vomiting… violently… again, everything in my being kicked in to survival mode… the sunrise found us at the ED getting iv Zofran to quiet the severe nausea, and a CT to see what had happened in G’s short 7 hours at home… Both lungs have fluid… G must have aspirated…again

Rather than fly him to Oz I made the decision to contact Kareem in Cleveland…within an hour, the team at Knox had prepared him for a quick flight to the north shore that G loves so much… Ash would meet him at the Clinic; I would arrive later in the day…

Michelle joined me at the hospital…she recognized something in G that I had not seen before…or perhaps I had and chose my own path of whatever it takes to help him, to heal him, to get him through yet another crisis… G said he did not want to go to the Cleveland Clinic.. he did not want to go back to Pittsburgh.. he just wanted to go home~ he wants to go home and not have pain any more, not have nausea any more, he does not want to be sick any more, he does not want to be stuck any more, poked, proded, CT’d MR’d, he doesn’t want TPN anymore… he just wants to go home…

rather than the familiar Momma call Costa, he was at peace~ after hours of exhausting conversation, questions, the Dr Speaking with him, Amy his trusted nurse and friend spending extensive time with him, G made the decision, looking directly in to his sisters eyes to go home… Michelle told him that the three of us, herself, Momma and Ash would take him home, let him rest, and let him go home to be with the Lord… he not need have any fear....

Hospice was called and immediately started putting things in place to ensure that G will have everything he needs through this part of his journey..

my mind feels paralyzed, shock purses through my veins… the feeling of helplessness covers me like a cloud that my eyes cannot find their way through.. Michelle was a tower a strength, Ashlee will be home to help hold me together and to bring G’s beloved Chelsea to be with him..

This is a decision that has been a long time in coming… not something that G just decided at the spur of the moment..I realized this as I listened to his weak voice and watched his interaction with his sister and the medical team caring for him

over the last year G has suffered to a degree that no matter how hard I try, I cannot paint a picture to accurately depict ~ there are no depths in the valleys of the mountains deep enough to display the pain my little buddy has endured… this is G’s decision, and no matter what my being, my mode of survival, my love for G as his Mother tell me to do, I must respect his decision and support him as I always have… whatever the arena of Garys fight has ever been, he has never been alone~ we have always been right in the fight with him... we remain there today, beside him~

Michael… you are such an example of the ultimate love; Sherry I so admire your ability to keep Kevin at home, right where he wanted to be…Linda, as I think of Angie I only hope I can be so strong for G~ Nik your phone call meant so much~ G loves you too

Please pray for Gary through these indescribable days.. That God would have mercy on him and give him the peace that he so desires..and bring healing to G's tiny body~ That God would give me strength that I have never had before… that his sisters are comforted as we all care for G during this part of his journey.. that his team who has cared for him without boundary understand, and respect his decision~

G is very sick, again~ but this time, things are different~G is in the driver’s seat…he was very clear about his desires, what he needs and we are doing everything in our power to do exactly what G asked us to do… keep him calm, quiet, painfree and without nausea… it is a tall drink of water but we have a team in place who promises me, my heart that this is possible… it is possible to have dignity, and compassion, and provide the utmost of care and avoid more hospitalization and suffering~

So many times over G’s life I have thought… this is the hardest thing I have ever done… I was wrong.. I am doing it now

I am peaceful Momma…I am peaceful~

Godspeed

Wednesday, March 20, 2013 1:07 AM EST

IF there are no additional issues and IF G can stay stable and IF he can climb 2 stairs with assistance today he will go home tomorrow....

we will be working on getting IV meds ordered etc etc etc and everything in place drug wise that he will need today

keep G in your prayers.....and me too :)

Godspeed

Wednesday, March 20, 2013 7:05 AM est

HAPPY FIRST DAY OF SPRING!!!!

we hqve offically been here for all four seasons.... we came in the summer (well, actually in February 2012), spent the fall, stayed for the winter and now it is spring....

G is feeling much better this morning and he is asking to go home... the goal is to get the tube out this morning and press hard for release... I know they are going to say we need to see if he can tolerate no tube and not start vomiting..... we need to then see if he can tolerate ice and not vomit... we need to be sure he is not going to obstruct again....

of COURSE he is going to obstruct again his gut does not work.....when will it happen? who knows! What I do know is that I know G... he looks good hopefully his blood work today will reflect that and it is time for him to go home... the 2nd day of spring would be a perfect day for him to head over the 3 rivers and through the woods... now... just to convince them of this....

keep G in your prayers.... today he is going to try to climb 2 steps with PT... another requirement for getting out of here...

Godspeed

Tuesday, March 19, 2013 7:43 AM EST

a relatively quiet night for G.... he had pain meds early this am and is sleeping now.....

no nausea.... the issue is pain management.....I am hopeful that the NG (hose to stomach) tube is pulled today and we can see if he can tolerate ice.... He has been working hard at keeping up with his daily walking even though he has been nauseated and in pain.... when he walks there is of course his IV with 5 lines, his NG tube with it's STUPID drain that overflows almost constantly, his drain and bag coming from his intestine, and his belly bandage that is supposed to magically stick on his tender skin, and his walker.... this is not easy task~~ he is a warrior

the plan of attack today is get the NG out, see if he tolerates ice and tolerates meds....

next pain mgt.... what can we do....

does he have a UTI and what do we need to do to treat it...

my goal is to take him home with me on Thursday... I am prepared for the fight.....G has to be able to climb two steps with PT.... the list goes on...

Godspeed

Monday, March 18, 2013 1:14 AMECDT

nausea is not an issue today... pain is...

back pain is overiding the abdominal pain.... G's bili today is 3.5 and his white count is up... this could however be due to the gangcylovir.... hmmmmm
HH looks ok today but the red count is a bit on the low side....again, could be the gangcylovir....

I can see G growing weary today.... he is tired and just plain worn down.... I hope this afternoon he can find rest... quiet, peaceful rest...

Nurse Becca is well... amazing... thank you so much Becca for all you do...

Godspeed

Monday, March 18, 2013 6:20 AM est

Back in oz… there is an icy sort of rain or something falling outside…. Not a good drive home for our nurses after their long night of work…

I am anxious to see G’s labs from this morning’s pull (4 am) His nausea does seem to be a bit better overnight but I am not sure how much a bit… today will tell the story…

I am wondering HOW in the world we are going to deal with pain… if we give pain meds, he obstructs, if we don’t have any pain meds on board he will not be able to tolerate the pain. It is starting to appear that severe pain not only in his gut but in his lower right back are going to beour new companions…. How to deal with this another serious issue.

How do we get him home with this testy intestine? and this level of pain...

G says both he and Karis are being held hostage ~ Karis is across the hall

We will see what the day brings…

Godspeed

Saturday, March 16, 2013 7:34 PM EsT

The entire house is moved with the exception of the furniture… that happens next Friday~ then on Saturday clean, Sunday return the keys….and start organizing the new house

Ash and Andy changed the door on G’s med fridge to accommodate it’s new space and make my life easier given the number of times I get in there every day…we have all worked so hard we are simply exhausted… we took a break for the birthday party which was so much fun despite the fact that we were missing G! G’s BIG surprise is in place just waiting for him to come home… we have all test driven it and approve! He is going to love IT!!

Tomorrow morning Jas, Mich, Shelby and Grady will come and join us for breakfast in the new house… it is a little bit crazy but the kitchen is up and running! It will be so great to have them all here…. All except our G man…

Sadly today Oz called to tell me G has yet another obstruction so unfortunately the NG (nose to stomach) tube had to go back in… this is heart breaking news on so many levels… Dr Costa feels it is pain medicine that is causing the issue… the problem is…. How do we deal with so much pain without serious narcotics…..which are leading to obstructions paralyzing the intestine worse than it already is ….Please pray the G stays stable tonight and tomorrow until I get back there.. Nurse Ashley is there today and tomorrow, and Nurse Bonnie is there tonight… both very dear to us and extremely trusted….Thank God for that….

For now…. I need to make some fresh ice tea so it will be ready when the kids get back to the woods from town…. Our new home is going to be such a beautiful blessing…. I am humbled and deeply thankful…

Please Lord… let G have a peaceful, pain free, quiet night….

Godspeed

Friday, March 15, 2013 6:00 AM est

after a rough day yesterday G's night went better... thank you so much Nurse Katie for all your help....when I must be away the nurse makes all the difference in the world....

G slept in the recliner last night rather than the bed and seemed to be more comfortable...he is having pain in his lower back.... praying there is not another fracture....

Ash and Andy will arrive today to help move boxes and small stuff to the new house as well as prepare for the mover to come next Friday to move the furniture.... G's hosp bed is already there and in place...I so appreciate thier coming to help... I know how busy they are....Chelsea will be coming too! I cannot wait to just hold her and hug her ~~ miss her so much!

Momma continues to make great progess at rehab.... so pround of how hard she has been working! Thank you to the team who is working with her to help get her back on her feetsies... the plan is for her to return home on the 24th~ Your cards have been so apprecaited.... she just loves them~ thank you so much

this weekend we will celebrate Shelby's 3rd birthday and Grady's 5th birthday....the ag barn will be filled with princess's and transformers! It is hard to believe my babies are getting so big.... love them to pieces....

please keep G in your prayers.... we are dealing with so many issues and none of them simple.... every preperation that anyone can think of is being done to get G home safe and sound.... hopefully next week...

Godspeed

Wednesday, March 13, 2013 7:29 AM est

it just started snowing.... like POURING snowing... Spring... please hurry~~

G is making progress...... yesterday walking with me and the help of his trusty walker which I personally think needs a name, 4 times.....

blood pressure under control with close monitoring and new meds...

NAUSEA.... has NOT returned prayerfully, stays this way... will have a repeat CT to take a looksee....

our challenge at the moment is the ostomy... it does not want to keep an appliance on which not only creates huge issues with managing it but has torn G's fragile skin to pcs....his skin has been treated again last night around 10 p when the appliance last came off and this morning that applicance is still hanging in there...I have it's replacement all ready .... it is just a matter of time

there is much conversation going on about what to do with G.... one school of thought (insisting) is rehap here in oz.... the other school of thought is GET HIM HOME ASAP and continue his rehab there... it was obstruction that brought G back to oz... not an issue with falling or injury.. the 3rd broken back occured here in Oz from his stretching in bed... the jury is still out

Andrew had to take Ash to the ER during the night... she was violently ill, vomiting out of control and needed IV intervention... 2 liters of fluid, a couple runs of zofran and she is back home... still sick but much more stable.....no vomiting this morning....

Granny is making good progess at rehab.... she has so been enjoying your cards... today she will recieve a beautiful boquet of fresh flowers......

our family, more than ever needs some downtime.... peace, quiet, with NOTHING happening... nothing at all....and we need it now....

Godspeed

Tuesday, March 12, 2013 9:29 PM EDT

turns out.... it was not food poisening... it is some kind of buggeboo that Andy had.... now, it is Ashlee's turn...and one of her boys that she Nannies, and Dad too....

oh deary me....

G has walked 4 times today... hard work, but he is working on it....bili still in the 3's we will see what tomorrow brings... will have a repeat CT to look at lungs and belly to see what is going on in there.... may be able to stop ONE of the antibiotics....

for now... time for some rest...

feel better baby .... love you

Godspeed

Monday, March 11, 2013 10:30 PM est

24 hours and counting..... no nausea..... Lord.. protect us...bili today is 3.1

g needed blood yesterday... today HH is 9/27 hmmm was hoping for more of a bounce...

our Andy is so sick..... Ash thinks it is food poisoning.... this has been one rough year for our family starting in Dec, 2011...Jasons Dad earned his angel wings, his Momma has been hospitalized several times, Grady and Shelby have both been sick, Shelby had surgery, Michelle has been sick, G starting having GI bleeding and well you know the rest, we lost our sweet Karen in February, my Momma has been sick, we lost Toshie, my Mom has been sick, my cousin earned her angel wings and just a short time later so did her Momma, and now Uncle Bob has earned his angel wings....Kareem jumped ship and went to Cleveland, good grief Charlie Brown! (I am sure I am forgetting something)

please Lord.... let tonight be calm, let the darkness bring quiet....

Godspeed

Monday, March 11, 2013 4:17 AM est

nearly 12 hours have past since I pulled G's tube from his nose (NG) that was keeping his system deflated.... so far, so good..... I am almost afraid to say it outloud...

his back is coming along however with each incedent of fracture it takes longer... I am praying this is the last experience we have to endure with a broken back

we will see what the day brings to g as it unfolds.... hopefully, prayerfully, absolutly nothing... just quiet, peaceful progress....

Godspeed

Saturday, March 9, 2013 10:42 PM est

it has long been known to me that miracles and tragedy walk hand in hand... they are rather strange partners but perhaps one cannot be without the other...

today I learned that our friend Kristen and her hubby are expecting a baby...after being with her brother Michael as he was released in to joy and suffering along with her Momma Jolinda such a horrible loss... a new baby is about to enter thier lives....

tomorrow our sweet little Grady will be 5 years old! I can hardly believe it....it seems like just a year ago that I camped out with Michelle on thier sofa and neither of us could close our eyes that first night as we watched Grady sleep in what had been Ashlee's cradle, a gift from my Mother when Ash was born.... he was so beautiful and we had long conversations about who he would become.....at the same time our hearts still break as we think of our Kevin being released in to joy on the very day the Grady arrived... how can it be I remember wondering... how could it be....

last week on Monday G had surgery to repair his third broken back in less than three months... my heart was so heavy that I was not here in Oz with him as I was tending to the needs of my Mother.. at the very same time as G was having his surgery I was signing paperwork for our new home... our realtor had been looking for just the right home for quite some time... there were many things on the must have list and she managed to find them all plus the bonus of finding a home that looks out to the lake that we have come to love so much out in the woods...I cannot wait to get G home...

G's moaning as he sleeps is almost constant now.... his face is red and his arms, chest, back, legs, feet and rib area is puffy... I have given him a bath, repositioned him on his side, and tucked him in for what I pray will be a quiet night for him...

your prayers are so deeply appreciated... thank you for keeping G and our family before the Lord.... it is only by grace...

miracles and tragedy... they really do walk hand in hand..

Godspeed

7 am, Sunday
last night, Andy's Uncle Bob earned his angel wings.... please lift his wife, Kitty, and our entire Cleveland family before the Lord.... may Peace beyond our mere human understanding surround and comfort....

Saturday, March 9, 2013 11:02 AM est

after a long night of nausea and vomiting over the NG tube this morning it was so refreshing to look out the window and see blue skies....

g's bili remains at 5.5 up a bit from yesterday.... this tells us his liver is struggling against the back flow of gases which are flowing to the biliary tree compliaments of his continuing obstruction...

hopefully today, the nausea subsides....

Godspeed

Thursday, March 7, 2013 6:54 PM est

once again we find ourselves in battle.... g's bili rose to 7 and through intervention has fallen to 5.7

g is once again, very sick..... he is asleep for the most part for which i am thankful...

the NG has been placed to once again, deflate his system and hopefully this obstruction will resolve on it's own and quickly.....we will see what happens during the night..

the only thing that runs through my mind right now is how sick of being sick I am... I cannot begin to imagine how sick of being sick G is..... I am not talking about a little sick... like the flu, or a cold, or chicken pocs... I am talking.. sick....

the quiet moans speak volumes to me.....

Granny, back at rehab.. all is well...

Godspeed

Thursday, March 7, 2013 7:33 AM est

bili 3.6 hmmmm

I will be back in oz this evening..... will get an eyeball on this and get things back under control..

g has been having anxiety and pain... hopefully a better day today

Granny continues to do well at rehab... thankful~~

Uncle Bob was expected to pass during the night... I have not heard anything yet this morning.. keep Andy, Ash, and Bob wife Kitty as well as our entire Cleveland family in your prayers as very difficult days are endured...

Godspeed

UPDATE~ Mom is being taken to the ER with chest pain and nausea and at the very same time G has a new obstruction. The NG has been placed....

Captains log 9:33 am

Tuesday, March 5, 2013 8:24 PM est

today G's bili is 4.6

hmmmmmm.... waiting for a call....

Godspeed

Tuesday, March 5, 2013 109:58 AM EST

G is doing well post op but having alot of pain.... they are working on this...

Granny had a good night and slept well.. first rehab session this morning went great! Her therapist graduated in North Olmsted with our Michelle~~ small world..

if you would like to send her a card or note of encouragment you may do this at:

Mary H Cline, c/o
Cemterburg Pointe
4531 Columbus Road
Centerburg, Ohio 43011

She would be thrilled to recieve cards... thank you so much~~

let this day stay quiet and calm...

Godspeed

Monday, March 4, 2013 2:52 PM EST

G is in recovery~~ all went well.... he will return to 11 North, not to the TICU.... my heart is so thankful for this mercy....now... to figure out how to protect these very fragile bones while we work hard to rebuild them with daily injections of forteo and keep cutting steroids....

Mom is doing better today~ I was actually shocked when I saw her~ she had her MRI and I will pick her up around 5 pm and take her to rehab... she is anxious to call her dear friends.... what a difference a day or two can make.... prayer is all powerful....

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
Isaiah 41:10

your continued prayers are so deeply appreciated as we work to make it to the edge of the woods

Godspeed

Sunday, March 3, 2013 8:34 PM EST

2 Corinthians 4:8-9 (New Living Translation)
We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed.

(thank you Sue... from the bottom of my heat~)

tonight and in to tomorrow, pray the G's surgical repait to his T9 is successful and uneventful... thank you Dr Costa for riding herd for me in Oz while I am away... God Bless You

tomorrow morning Granny will have a much needed MRI.... the doc finally put an eyeball on the CT and to her surprise, not found in the report there is calcification around the frontal lobe... this could explain the sudden change to Mommas mental status... this is an unusual finding on a CT...once the MR is completed tomorrow, a copy of the CT and the MR will be overnighted to Oz (thank you Dr Zuccoli for your graciousness and help)It is possible that what we are seeing is being cuased by a very rare from of arthritis...

also, please pray for Cathy.... she is very Dear to our Michael (his second Momma) and she possbily suffered a TIA this past week....

also my cousin Donna Sue who was just dx with cancer... I do not have any details but keep her in prayer...

in our northern family, Andy's Uncle Bob is very ill in Cleveland... he will be placed with hospice tomorrow.. please keep Andy, Ash and Andy's entire family in your prayers....

God is so good and yes Sue you are so right, no surprises to Him~ he's got it...

Godspeed

Sunday, March 3, 2013 7:45 AM EST

morning.... snow is quietly falling out here in the woods behind the lake.... a reminder to keep my mind calm and over a cup of coffee refocus....

I have heard myself say so many times to others the first thing to do is NOT panic...I am not panic prone but have been feeling very overwhelmed having two very difficult situations with two precious hearts in two different hospitals in two different states.....last night I had a short walk in the woods to clear my mind and settle my heart...it was cold and crisp and allowed me a very rare, time out....in the very cold air to my surprise, a few brave tulips were starting to poke thier heads out for a peak giving me a smile... renewing my hope~

this morning upon calling each hospital bright and early for the latest update I was told that Mom, after staying up for 5 nights in a row, (how she has not just passed out is beyond me) was finally, asleep.... how long will this last? I don't know but for right now, this moment, she is sleeping.... thankful for this..Mom's mental staus has not made any progress whatsoever....Yesterday I finally did see a Dr (I am not used to this) and reviewed blood work and recently administered meds (they are not used to this) I advised in NO UNCERTAIN TERMS (Todd, you are now on notice if I need legal assistance) the Mom is NOT to be given any antipsychotic medications (Halodol) and requested that they try ativan or trazadone so she can get some much needed sleep.... her mag and potassium are coming back in to line and she needs a day of so more of IV antibiotics as the bronchitis is hanging on for dear life but we are making progess...I am making very difficult decesions during these days...my heart has been heavy, weighted down, but this morning I remind myself to do what I ahve been telling others, don't panic~ take a deep breath~ my brother and I touch base and I bring him up to speed...today we will visit an extended care where Mom may go for some rehabilitation... hopefully, with rest and focus her mind can return to her and she can come home...the past almost 11 months have been grueling and I fear they are taking thier toll on her..

G is working to manage his pain with the help of a PCA... surgery will occur tomorrow morning.... I am very hopeful that he can return to 11 North where he is so familiar with everyone but only time will answer this question for us... my comfort has been at least he has the frame of mind to speak to me on his cell phone.. hearing his voice tells me exaclty what is happening...Gary has asked every single time I have spokem to him, what is happening there Momma, are you okay, how is Granny~ I am ok Momma, I am ok.... In the past many months I have left words here that describe the horrendous issues G has faced and there have been many~we have fought through in faith one at a time.... the MOST important thing I can say about G is... Gary loves life... simply put, G loves life.... to the amazing staff on 11 North I cannot thank you enough for your help as I traverse these very difficult waters....thank you for caring for G and keeping me sane... love you all...

I was thinking of a chat I had long ago with Dr Costa when I opened my eyes this morning.... "it comes with a cost".... I think of the many families that I know have paid the price.... distanced relatives, lost friends, divorces, lost homes, destroyed business's, damaged spirits, lost concentration, overburdoned minds, broken hearts, and destroyed relationships, lives lost, lives saved and the sacrifice made by physicians that are almost unthinkable... then I think of the love and courage that I know from personal experience (my own brother was an organ donor years ago) that each family made in thier darkest hour to give a total stranger or in some cases, many of them, a renewed chance at life....life....a chance to experience the taste and feel of food for the very first time.... a chance to dive in a pool.... to ride a motorcycle for the very first time... to sleep laying down in a bed for the very first time... to not have pain, tubes, feeding pumps or ivs or drains for the very first time....

We are traveling very difficult paths these days.... but even in the worst moments, there is no regret... only thankful hearts....we are so thankful for so many for the very first times....for noodles and green beans, and yes, it comes with a cost....

keep us in prayer this week.... it will prove to be difficult and will demand great strength... I keep my mustard seed handy....

Godspeed

Saturday, March 2, 2013 8:11 AM EST

our fears confirmed...

this time fracture to the 9th lumbar vertebra.....
there will most likely be surgical repair, discussion is ongoing

bigger problem~ how do we deal with these constantly breaking bones.....

long night for Granny.... 4th night in a row she has not slept at all......

off to the hosp now (Ohio)

Godspeed

Friday, March 1, 2013 2:18 PM EST

G stretched in bed..... just streched..... and POP

he is being taken for an MR..... we are praying that his back is not broken, yet again....

updated on Momma..... sadly, she is, I cannot really explain it..... I have to digest this..... notes later....

at this moment I just simply do not have words.... there is no description..... I keep my mustard seed in my pocket....a constant reminder

Godspeed

Friday, March 1, 2013 7:00 AM EST

life is not the way it is supposed to be.... life is the way it is.... each day, each of us, regardless of the cirumstance we find ourselves waking up to make a conscience decesion.... let it get us, break us down or find a way to make the best of whatever we find ourselves in the middle of.....

last night found me crossing over the three rivers and through the woods to home.... or well, to our local hospital I should say... while G is doing well and making good progess on getting back to where he was prior to the obstruction, my Mother has suffered some sort of apparent brain incident.... she knows where she is, she knows who we are, she is aware of current events but that is the end of her reality.... she believes that she has been taken in to a cult of some sort, and the cult has taken over even our local hospital.... she physically looks different to me than she did just a short 5 days ago when I deleivered her to my brothers home....I will speak with the Dr today and get a copy of the CT and requet and MR both of which will be sent to Pittsburgh for examination by a neuroradiologist that I trust. She is being treated for bronchitis via IV levequin (antibiotic) and hopefully this clears soon...

I have a very short window of time to do some scrambling to provide for my Mothers care before I return to Oz.... option 1 - find a person who can stay in our home with her for the next 2 weeks until I can return (hopefully) or possibly 20 days in extended care/rehab - not my first choice but perhaps my only choice...we will see what the day brings as it unfolds....

pray that my Mother not suffer...her greatest fear in life is that she will be placed in a nursing home ~ after devoting her career in nursing to caring for nursing home patients, she has expressed numerous times that she does not want this to happen to her...My greatest fear is her fear.... I do not want her to feel fearful, and I want her to understand I would never let anything happen to her....

Lord.... today and over the next few days... direct me, open the necessary doors, allow me to see clearly what I need to do... protect and bless my Mother who has long been your servant and child... protect G as I leave him in capable and trusted hands until I can address these issues that are not at hand.... thank you Lord for your Hand in all of this... in Jesus name... Amen....

Godspeed

Wednesday, February 27, 2013 5:36 PM EST

G has had a very good day.... he has had some ice cream, been drinking some milk and the drain is once again working!
To this point no nausea, no distention, so far, so good... BP is doing so much better.....

got the ok to toss him in the shower~ nice that he can sit :)

we keep marching on....

Godspeed

Wednesday, February 27, 2013 5:28 AM EST

For I am the LORD, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.
—Isaiah 41:13 (NIV)

do not fear..... there is so much power in these simple words.... do not fear... the thing that really sticks out in my mind over the past few days is our ability to not fear...I see people every day filled with fear.... and I totally understand....a hospital is a fear filled place.... I am so thankful that we are able to know without even giving it a thought that no matter what happens we are right where the Lord wants us to be and we are not alone....

nearly 24 hours have past since the NG (keeping the system deflated and empty) was removed..... G is doing extremely well... no distention, no nausea, things are flowing through our drain (ileo) again..... in reading the report form the small bowel follow through the narrowing of the intestinal tract was clearly seen... we are getting to know our enemy well....the old saying comes to my mind.. keep your enemies closer.. at least we are really learning exactly what we are up against... we do not have a clue why, but does that really matter at this point... not to me...if we just know with whom we are doing battle we can better equip ourselves to fight....

G continues to recieve big time antibiotics and will do a long run of caspo~ probably at least 3 months... he has been more awake in the past 24 hours than he has in the last 8 months.... his mind more clear, his speech is good, his thoughts have some order.....

we are anxiuos to hear what Costa will have to say today.... G did need some blood yesterday ~ it's all good....

Granny continues to fight bronchitis... her antibiotic was switched out yesterday to leviquin... hopefully this helps her emensly..

Godspeed

Tuesday, February 26, 2013 1:26 AM est

As shocked as we all are… G is making progress…… tonight he said Momma… I want to go home… you will sweet potato, you will… just keep hanging tough buddy and keep believing~

The follow through, to our great surprise was a success! Out little intestine allowed for the contrast to pass from the stomach in to the intestine and out our drain (ileo)

Bright and early this morning Dr Costa will arrive to remove the tube from G’s nose that has been keeping his system deflated… next step, wait and see what happens… hopefully, G does not become distended and does not start to vomit…. Lord… we move forward in confident faith… whatever upset our little intestine so much just a little over a week ago leaving G once again, fighting to survive please keep it at bay…. Amen….

We have not yet had the CT to look at the lungs.. once step at a time….if we can just find our way back to where we were a little over a week ago ….

Granny is doing better but still is quite sick and weak… please keep her in your prayers…. I am already mentally planning the celebration of her 85th birthday this July…. What a day it will be!

As I jot these little notes in these early hours of the day I know that there are so many of you who will check in today to see what is happening and how you should pray…

There are no adequate words to express the thankfulness of my heart and how humbled I am at your capacity to continue to lift us as we travel these complex and difficult paths… I share regularly with our team, our incredible nurses here on 11 north, Dr Costa, Barb our amazing coordinator, and of course G that all of us are before the Lord constantly thanks to so many voices who continue to pray.. Prayer makes a difference. It makes a difference. We may not know where the path takes us next but we do know that the Hand of God never leaves the wheel… we go without fear~

Godspeed

Sunday, February 24, 2013 9:29 PM EST

nothing can renew your spirit like having your grandaughter style your hair, or having a sleepover with your grandson....

Granny is at Don and Kathy's recovering from bronchitis which was confirmed at our ED visit Saturday morning... hopefully she is feeling better soon.... bless her little heart...

G has had a decent weekend... great progress has been made on his blood pressure.... tomorrow we are going to have a samll bowel follow through to see if anything is passing in to the intestine... if so, we will make attempt number one at pulling the NG tube.... if not, we wait... We will take another look at the lungs to see what kind of progress we are making on the pneumonia....

Please life the family of Dawn in your prayers as she earned her angel wings as the snow lightly fell on this night... May the Lord surround them in comfort and wrap them in peace.... Inez and Momma... we are hugging you.....

Godspeed

Saturday, February 23, 2013 8:24 AM est

passage across the three rivers, through the woods to home was uneventful, thankfull for travel mercies...

this morning PLEASE lift our good friend and PRAYER WARRIOR Carol before the Lord... she has been sickly and we are hoping she is feel better soon...... thank you for your prayers on her behalf...

Granny is heading to the ER this morning as I am sure she has now developed pneumonia.... this is to her great dismay but....she sounds terrible, looks horrible, and is after all 85 years young... this past week has really taken a toll on her and our wild weather does not help anything... once we get to the ED, have a look see at those little lungs, get some drugs, I will pack her up and take her to my brothers... thankfully they are going to help me out for a couple of weeks... I just have a 10 gallon bucket with 50 gallon of water in it... I dropped the car off this morning to Freddy Chevy (thank you for meeting me on your day off) to have the repairs done from when a laywer bashed in to my car way back in July 2012 in Pgh... they were so kind to lend me a loaner to driver for the week so I can head back to Oz.. once I get Granny safely deliverd to my brothers home I will head back to the house to pack up the items I need for work... printer, scanner, files, and do some laundry, change beds so they are ready when we return home (someday) then, head out to see my grandbabies who I have not seen in FOREVER and I miss so much... then I believe I will sleep here tonight, in my OWN BED (luxury) and head back to Oz early in the am...

things stayed calm overnight for G thankfully (please little intestine, just one more day - don't do anything crazy). We are making some progress on blood pressure... not to the goal yet, but making progress.. the obstruction is still there and hanging tough.... we are not giving up on self resolution... we are hanging tough too...

thank you for your continued prayers..... I don't know of any way that I could wake up and face another day without the Lord and His Graceful touch in my life.... He is so good to us....

Godspeed

Thursday, February 21, 2013 8:42 PM EST

thankfully, the line was removed from the groin this afternoon...... G is experiencing some bleeding from the ostomy and the NG tube.... we will not be doing anything crazy to try to find out from where but will give cyro to get this stopped...

the NG is sucking away still pulling quite a bit from the stomach but keeping the system deflated....

we are going to do some experimenting with the FK (Prograf - anti rejection) and actually cut it back... we are also going to try to reduce the steroids as they could be causing some of the issues...

BR today has made progress..... we will keep working on it.... the obstruction is hanging tough but so are we....

Granny has a horrible cold~ it will be good to get her our of oz and back home.... tomorrow that will happen... I need to make a run for the border to grab my scanner and my printer so I can work from G's room to full capacity.... busy days ahead.......

I ahve not heard today how Nicole is getting along.... we pray she is doing better~ I have to catch up with Carissa on FB to see what is going on with her...tonight I will also check in on Karis to see how things are for her... continue to keep these tough, brave warriors in your prayers as well as Maria who is doing battle as well...

for now, will give G a bath, then off to sleep for some much needed rest....

Godspeed

Thursday, February 21, 2013 7:03 AM EST

this update comes to you from 11 North, not the TICU!

G continues to amaze us.... the two remaining issues are the BP (which Nicole on 11N made progress on overnight) and the obstruction which, once again, we just have to keep the NG in place, manage the pain, and wait for our little intestine to chillax and allow the obstruction to resolve...

G's ice in take has now been reduced to one cup every 12 hours... we will try dividing the one cup in to 4 small smackerals but I am sure G will be begging for ice....

We are hopeful that today the triple luma line will be removed from the groin... the PICC was replaced yet again yesterday and so far is working well......

prayer direction for today~
1. blood pressure resolution
2. obstruction resolve... (and patience for us all)
3. pain control and continued nausea control

Carissa is back in the hospital on 12 N - keep her in your prayers.. and Nicole recovers in TICU from yet another surgery~ please keep her in your prayers.... keep Maria in your prayers as she battles at home..... these are tough warriors...all of them...thank you for keeping their names before the Lord...

Godspeed

Wednesday, February 20, 2013 6:16 AM EST

G has had a quiet night for the most part... waking for pain meds and to ask for some ice chips which are being freely given to him for comfort and to keep that sense of I want something to munch..... the NG sucks the ice right back out so no stress on our little intestine....

Issues continue to be blood pressure and obstruction... first, let me speak to obstruction...

yesterday I met with an abdominal radiologist who was so kind to walk me through the most recent 2 CT scans of G's chest and abdomin...this is so helpful to me as I want to clearly understand the monster we are dealing with.. the obstruction clearly is mechanical and is located at the jejunum or mid gut small intestine and lies between the duodenum and the ileum. The culprit which is causing this is SUSPECTED to be scar tissue which unfortanly ANYONE can get following A surgery.... G is extremely prone to scar tissue and alot of it as you will recall following G's exploratory surg of a few months ago and the subsequent bleed the scar tissue which had been removed one week before the bleed had already returned and could not be cut with a scalpel and had to be removed with scissors... this is attempting to be addressed by the text book.... NG tube to keep the system deflated, antibiotics to keep infection/toxicimity at bay, IV fluids, total gut rest..... the hope is that the obstruction will CLEAR on its own and we can avoid surgery which only leads to more scar tissue which leads to additional obstruction (one of the pressing issues with G's orginal equipment intestine) It is hard to be patient.... but, patience is our only choice.... so please little intestine....relax, be quiet, and let this obstruction resolve....we are trying to help you...

next Blood PRESSURE.... yikes! Costa had to be awakened during the night (I wonder does he ever sleep all night?) because the now 4 meds being used to get a grip on the BP are not having any effect allowing the pressure to rise even higher over night in to the 180's over the 110's and teens... WHAT is causing this???? well... alot of things.... given the this is happening and G is asleep rules out emotional stress related issues for the most part...pain is a contributor, OBSTRUCTION is stressing the system causing the pressure to rise, possible issues with G's vascular system (his orginal one, not the Kareem-Costa built circulatory system), third spacing (fluid collecting where it should not be), many, many possible culprits... BP issues are not uncommon to intestinal transplant pts... but none the less, must be resolved before new issues result....

I have not seen the results of the pathology but am anxious to hear however I suspect to see no rejection found.

We have adjusted our plans for Granny until Friday due to the new WINTER weather of the day making roads difficult..for now, stay put...

Sue a note to you..... it is funny that you mention our Ohip refridge.... I had just gone on a shopping trip to the market.... haha... a job that awaits me upon my return.. clean the frdige....LOL... we do hope that your ankle is feeling better soon.... gracious...

here in camp G I discovered that putting a face mask over the motion sensor on the ceiling that turns the lights one multiple time per night whenever anything within a 5 mile radius moves WORKS!!!!!!!!! A full night of NO lights coming on here in Camp G.... my little cot never felt so good.... my good friend Patty made deliciouso meat loaf and mac and cheese... some oranges and eng muffins for breakfeast.. does life get any better???????????? Thank you so much Patty.... yum yum yum....

please continue to keep G in your prayers as he fights the most incredible battle to find his way back, yet again... I really am almost beyond words as I see his tiny frame (which is apparently dressed secretly in marshmellows) and I look in to his sometimes open eyes and can see his determination....this is a warrior...a warrior....

continue to keep Costa and company before the Lord..he has full hands as he cares for his precious warriors....

keep Nicole in your prayers along with Brian who loves her so much..

from Camp G... hugs hope and love

Godspeed

Tuesday, February 19, 2013 6:50 AM EST

first let me say..... once again, I did not expect that I would be bringing you updates on G's status by this point... even in the roughest sea, the darkest night, the most narrow of passageway, God has His hand on the wheel...we are not tossed in the waves.....

late yesterday afternoon G underwent an endoscope through the ileo... Dr Kevin McGraf and Dr Costa took a look only 3 inches inside not wanting to upset our little intestine in any way... I deeply appreciate them allowing me to be in the room so that I could see our little intestine for myself, with my own eyes as Costa would say.. to our surprise, the intestine had good texture, good color, excellent blood flow, and we could even see the little villi.... two biopsies were taken with a small amount of bleeding. The pathology was ordered stat in an effort to have it early this morning.. we could not visually see rejection....hopefully this morning, pathology is back

blood pressure continues to be quite the issue.... 165/104 appears to be the new happy place.... G is being given 3 meds to try to bring this down but as of yet the right combination has not been found. It is with great caution that meds are changed as we do not want the BP to suddenly fall out... steady as we go...

next stage of the exploration, the obstruction..... how to see it, how to find out is this a mechanical obstruction as Dr Ferris believes it to be? OR, is it an ileus? Conversation is ongoing on how BEST to determine this...in the meantime....the NG continues to keep G's system deflated, a new PICC was placed yesterday without issue (thank you Dr Orons) so hopefully today the line will be pulled from the groin, the ileo is not putting out much of anything (becuase the system is deflated), nausea is for the most part under control, pain control is a project and ongoing but is being covered pretty well (we do not want to put G under but keep him comfortable)

prayer direction for today~
1. comfort, peace, quiet peace for G
2. direction, clarity for Costa and company
3. strength for Lin
4. rest for Granny (she will leave Pgh on Wednesday as the days are grueling and go to Don and Kathy's home)
5. peace for Mich and Ash~ it is so hard to go through this from a distance and feel so helpless

again let me say... your notes are so deeply appreciated.... we are sincerely thankful that you continue to lift G before the Lord..... His grace continues to amaze us....

Godspeed

Monday, February 18, 2013 6:38 AM EST

2 Timothy 1:7 God gave us a spirit not of fear but of power and love and self-control

as we begin this new day G has not had much change overnight... his blood pressure continues to be a challenge and the third spacing (fluid) continues to be a force to be reckoned with... I am sure that this morning Costa will make more tweeks in the battle plan

last night while resting in camp G on my little cot I was thinking about the fact that we do not have time or energy to spare to be wasted on fear.... after all, what is there to fear? There is not way for us to know, even through consultation with the wisest we could find, what is going to happen in our situation.... in my heart I know that no matter where God delivers us it is right where He intends us to be....and we will not arrive alone~ He will be with us...

prayer focus for today~
1. comfort, restful spirit, quiet peace for G
2. direction, focus for Costa and crew
3. clarity, calm, focus for Lin
4. rest for Granny (these days are exhausting for her)

We have no power of over this monster who is attacking but we do have the power to take action in prayer... your willingness to pray with us and on our behalf is so deeply appreciated....darkness cannot overcome us...

please lift Nicole and Brian... Nicole had emerg surg lst evening following the removal of her transplanted intestine

ps.... I did get a power cord.... thank goodness

Godspeed

Sunday, February 17, 2013 4:17 AM EST

Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light. (Mt. 11:28-30)

issues continue with keeping G's blood pressure stable... part of the problem is that his meds are being crushed and put through his NG tube.... a practice that as of today will probably end... I suspect that this morning Costa will change everything over to IV as the meds are passing intact right through the loop ileo.. G has started getting severe headaches and we are becoming suspecious that pieces of intestine are passing through the loop ileo.... trying to get him to a point where he is stable enough to be scoped to see what the heck is going on in there...G is very figitty and itchy... the NG was replaced during the night as it had curled up in the stomach and was not working at all. We need for it to work to keep that belly deflated and empty so G is not vomiting over the tube....

issues for prayer today~
1, comfort, peace and mercy
2. direction for me - there is so much going on, I need to have a solid plan, housing for Granny here in Pgh
3. as dumb as this sounds, a correct cord for my laptop (grabbed the wrong one)
4. direction for Costa

I deeply appreciate your messages here on the bridge and on fb... I am not sure what valley we are traveling through or where we are headed but I am sure I am not alone....

Godspeed

5:42 pm smoe mild med changes.... and wait..... not much change, just some more fluid filled tissues.... G has been sleeping most of the day ~ opening his eyes only a few times.... we are here G..... we are right here.... took time out for a break, ordered some pizza... Granny enjoying some brocolli soup from Panera (thank you Micheal for hopping down the hill) ...

We deeply appreciate your notes, messages, emails and most particularly your prayers......G is a brave warrior... we are so proud of him... we are right here G.....

Godspeed

Saturday, February 16, 2013 11:07 AM EST

when going in to battle you must have an excellent comander....or, you have no chance of making it through the battlefield...

just reviewed the latest blood results with Costa... amalyse and lypase have fallen from over 600 to under 100! This is MAJOR progress.... meaning... both little pancreas's are functioning this morning... the liver is happier as well..... the theory is that getting 1500 ML of fluid off the stomach and the HOST of drugs that are loaded in to the cannon are having effect.... HOWEVER...

next week they will look for rejection via biopsy.... IF in fact this is rejection, active rejection, we will try to slow it down if we can BUT will not be able to treat... the plan will be to keep G comfortable.....

the other question is.... have numbers improved because of drugs and deflation of the system via the NG..... soooooo we have no idea where this leaves us in the big picture.....for now we don't know... the bottom line for now, as of today...... G is very sick.... we are pleased with the progress that we have made...we do not know however how permanent this is, or what exactly it means... for now we are taking it that it means we have made some progress... the edge of the woods is far.... but we battle on.....

Please continue to keep G, Costa, all of us in your prayers... we are walking a tight rope.... carefully, steadily as we go....

Godspeed

Saturday, February 16, 2013 1:03 AM EST

G is on a precarious ledge.....and he is fighting......

Ash arrived in Oz safe and sound and we are holding up in camp G in the waiting area of TICU.... G just asked his nurse for me and I went back to recieve a hug and a I am so sorry I got so sick Momma.... its ok G... not your fault.. it just happened.... its ok.... get some rest G you have hard work to do.... we are right here with you... all is well....

G's numbers are not good and Costa is providing the weapons that G needs to do battle.... as Kelly said, it is up to God now... Costa said we will see what the numbers look like in the morning....

your notes here an on FB touch my heart and lift us on the battle field....thank you from the bottom of my heart....

hang tough G... hang tough...

Godspeed

Friday, February 15, 2013 10:25 AM EST

the calm before the storm.... G had such good days Wed and Thrus... up all day, sitting on the sofa, doing some exploring on the computer, looking at word search.. eating some popsicles....

last night around 9 pm he started complaining that his lower right quad was hurting.... by 9:30 his second dose of dilaudid was in.... and a message to Costa... by 10p we were heading to our local ED for pain control and a look see.. WHAT IS GOING ON???? no distention, no nausea, just PAIN, BIG PAIN.....

a CT read by the Cleveland Clinic shows intestinal obstruction and fluid on the left lung..... by 4 am phone calls were happening, instructions being given by Costa to the locals and life flight called to carry G to Oz....

Life flight had flight crew change at 7 am and arrived with the Big Yellow Bird to pick G up at 7:20 am... G was given some serious pain meds which allowed him to immediatly go to sleep....I was so thankful.... he was wrapped in a cacoon nice a warm, loaded to the flight gurney, wisked to the chopper, loaded on, buckled in, and away they flew .... Thank you so much Metro Life Flight, Cleveland for your care, compasion, and extreme expertise and for the safe delivery of G to the waiting hands of Costa in Oz....

I have been up since 4 am yesterday so I will head for some rest before hopping in the care to head through the woods and over the three rivers... I know G could not be in better hands....

Keep G in your prayers as this latest issue is dealt with however it needs to be..... first and foremost, pray for peace, for comfort, and that the Lord's intentions be done... we are at peace knowing that we have no idea what the Lord has in store for us... we only ask that He continue to bless us with His grace and peace beyond our human understanding... Thank you Lord for Barb our co ordinator who not only provides such incredible care for G but loves him as well... and for Costa...for Dr Amesur who is always ready to help G however he can~ I simply do not have the words to express the appreciation of our hearts.....for all our extended Pittsburgh family ... I don't have any idea where I would be without all of you... we love you all so much....

for now..... Godspeed G..... Godspeed~~ we love you honey and Momma will be there soon...

hugs hope and love~~

Godspeed

4:34 pm G is suffering sepsis (which blows my mind given that we just had negative line cultures) so the PICC has been pulled and a femoral line (groin) placed to provide access for antibiotic, fluids, TPN... all G's stuff.... an NG tube has been placed...

I am packing up getting ready to head east~

we appreciate your continued prayers...

Godspeed

5:08p pgh just called me.. bili now at 7, amalyse 697, lipase 376

Lord... hold G in your arms and wrap him in your peace and comfort.. please, let me get to oz.... In Jesus name I pray.... Amen

Godspeed

Wednesday, February 13, 2013 -:38 PM EST

G has had the best day since coming home today... he was out of bed at 10 a and even had a pc of toast... WHAT????????? AND, 2 noodles for dinner....

he said maybe I will be able to eat again someday huh Momma.... one little noodle at a time? yep buddy... one little noodle at at time

poor Ash is sick and feeling horrible... Jas is sick.. yesh... there is so much happening all over the place on this night.. so many in need of prayer.. Marissa who I work with (she has my old office) is due to deliver her first baby in March.. a little boy.. he is coming TONIGHT! It was discovered she has preclamsia and he needs to be delievered now... my good friend Denise is keeping us informed.... Keep them in your prayers... my friend Chuck's Dad had heart surg, my friend Pauline's better half is having abdominal surg tomorrow, Nicole from Chambersburgh had her intestine removed today, Jodee is on the way to the hosp as we speak in NZ (waiting to hear about Matiese), Carissa is going have surg,my nephew Ryan's Aunt is serously ill, holy COW.... STOP ME

the point is....so many need your prayers.... life them all, all who are in need... before the Lord....He knows them by name, and He knows the needs.... thank you Lord for your allowance for G today and thank you for letting him speak to me and be on the same planet ....

Godspeed

Tuesday, February 12, 2013 6:55 PM EST

Our visit to OSU yesterday was quite the adventure…. The chariot arrived right on time 9:45 am and the same two guys delivered G safely inside for the journey… of course we had no idea which entrance to go to but this was soon resolved…. Then, the fun began…

It is worth noting….. I know that any hospital on any day can be a mad house… but I must say, that even on their WORST DAY, UPMC is a shining example of how you get things done and more importantly, how you treat others, most particularly, paying customers…

G was delivered to the ED and whisk up to the 2nd floor VAS IR before I returned from parking the car… the ED promptly told me they had lost him… had no idea where he was… and wondered if I was SURE he was in FACT there …. Uh.. yes.. I watched with my own two eyes as our guys brought him through the door… do you not have some kind of tracking system in place? After about 20 minutes and a few very clear signs of frustration from the ED worker it was determined that G was in fact on 2, in vas ir right where he was supposed to be…..
Upon my arrival to 2 in Doan I was greeted by the wicked witch of the west…. Little did she know she was speaking to the wicked witch of the EAST who can be much MEANER THAN THE WEST WITCH…. What to do you need what are you looking for…. My son who was just delivered to VAS IR… down the hall around the corner… what is his name.. Gary blab la bla… he is not on my list…. Well my dear… you are certainly on my list….. and I will make personal note of your personal name which and I am sure your supervisor will be happy to share the letter that I will be writing in the coming days… have you ever heard of the golden rule my dear? IRRRRRRRRRRRRRRR

Thankfully, the Vas IR group was much friendlier…. Ms Leeza who was to do G’s PICC exchange came and talked with us and shared her concerns and her desire to place a line in G’s chest wall rather than a PICC exchange… uh.. Sorry, note happening… here is Costa’s cell… you can call him and you all can discuss that… but I am quite sure that is not happening.. ok.. that is cool…

Like a reprieve from the governor our home nurse Ms Trisha text me… hey.. g’s cultures went negative… WHOA… stop the train…. A quick call to Pgh, another call to Nurse Trish, a fax to oz and the PICC exchange CANCELED!!! YIPEEEEEEEEEEEEEEEEE we can go home!!!!!!!!!!!!! No pain for G today… NOT SO FAST…

Another call from Oz regarding very low potassium…. Off to the ED we went for a repeat of the potassium… sounds so simply huh? A mere just short of 7 ½ hours later.. the potassium was back.. 4.7 THANK GOD ~ GET US OUT OF HERE
We arrived safe at home at 9 pm… g was delivered to his bed, I was so exhausted I felt like I could not stand up… IV’s started, tucked in … flushes done, meds given….. off to sleep.. by the time we left OSU I had decided if I had to say one more time, yes, they really do this kind of transplant, you are looking at it... I would well.... uh...

Today’s labs look decent.. Just low platelets… can hardly wait to hear the call.. G will need a 6 pack… another adventure yet to come..

For tonight… all is well… We are going to try to get a good night’s rest and I am going to try to get rid of this little bug I have apparently picked up…
Godspeed

Monday, February 11, 2013 8:42 AM EST

TODAY G spoted a red bird in the tree just behind the house.....

such a wonderful gift...

off to OSU we go.....

Please pray for Michael on this day....

Godspeed

Sunday, February 10, 2013 10:14 PM EST

every once in a while a glimpse of G peaks through... behind his puffy face, a smile breaks the surface... or maybe somthing he says that is out of the blue and does not fit the moment but stil so G...

I find myself thinking about some of things the Michelle has said to me....about being G's caretaker with extraodinary skills and how I split between caretaker and Mom.... when this happens she says, that is when the Mom in you kicks in.... from a Mom's perspective I wonder sometimes where my son has gone.... his struggling body is here, requiring all that it requires as G fignts to find his way back.... but the person who was G.... sometimes I fear is long gone.... his understanding of the world around him, of those who love him, and the precarious ledge we stand on~ none seem to register with him.... his bed now moved to the dining room allows him to look out to the woods 24/7~ I have assigned him the task of watching for red birds.... and sometimes, he remembers... I havn't seen any yet Momma... when will they get here? followed by, did you get the door unlocked and the guy said he will stop by later when you are not so busy.... ok G... thank you for leting me know.. there is someone at the door Momma... ok G.. I will get it.... just someone passing by honey...

I wonder to myself..... how much does one little body endure... and I wonder why... but I know why is not my question to ask... I remind myself of what we are doing and stay focused.... perhaps it is in the weak moments that exhaustion brings that my mind breaks in to a space where I normally do not allow it to go.... what would have been, what could have been? and then, my heart smiles as I picture G jumping in to the pool for the very first time... taking that first bite of green beans and noodles... and how much he loves steak and rattle snakes bites... it is sometimes dizzying... over my shoulder I hear his soft moans as he lies sleeping with the stars outside keeping watch over him... the moans... always a sign that all is not well... another part of our new reality....

today I was thinking of what a peaceful day it has been... Granny sitting at the bar in the kitchen, G lying in his bed just beyond, pancakes on the cast iron griddle, and a cup of coffee... g enjoying a freeze pop, green it was... I don't want any eggs Momma but thank you for asking.... ok G, maybe tomorrow....all is well...

Lord keep this little soul, this brave warrior in your loving arms...let tomorrow be swift and easy, let the PICC exchange be without incident or pain... let the journey be safe...Amen..

Godspeed

Saturday, February 9, 2013 7:17 AM EST

thankfully, no broken ribs, no collapsed lung... tore the muscle away from the bone which is equally as painful... yes, this happened just turing over in bed....

got some potassium on board levels better...

got G safely back home and had a relatively quiet night thanks to dilaudid IV

g's amalyse and lipase are extraordinarly high, in the 500's confirming a probable slight obstruction in the intestine of yesterday hence the increased abdominal pain ... you ask how does an intestine that is not doing ANYTHING obstruct??? good question... today the distention is better, the pain not so intense so I expect that the repeat blood work will reveal lower levels... will speak with Costa later today..

reservations are made to transport G to OSU (i told him not a good idea to wear his Michigan garb) haha... Michelle at OSU... thank you so so so much for your hard work and help in pulling this off saving us a 4 hour, very expensive trip over and 4 hours back from Oz...

for today.. moving the hosp bed to the dining room... will give a bit more space and g will have a beautiful veiw of the woods behind us rather than just looking at my Ansel Adams prints for days on end...

we are praying today for a quiet, pain free day (or at least better) and an uneventful weekend... that G can work through this process peacefully, quietly and with God's grace and mercy..... we are so thankful to have him home right where he needs to be... Amen

Godspeed

Friday, February 8, 2013 5:04 PM est

captains log 2/8/13

just got confirmed for picc line change out at OSU on Monday at 1pm... will need to set up the ambulance ride and need to be there no later than 11a so they can get a grip on G's history in addition to the info that has been provided via UPMC~ so thankful for this...

Erin is working so hard at our local CVS to get G's rx's all straightened out.. it is a big job and we appreciate her efforts...

Mimmi who is our iv infusion guru has requsted a standing order for potassium, phos for g for the next time we need to infuse him....

today his potassium dropped to a dangerous 2.7 so.... you guessed it... another chariott ride to the hospital for infusion of potassium... and in the meantime... when G turn over ever so slightly in bed, we believe he fractured his ribs on the right side.... sooooooooooo add CT to the mix to rule out pneumothorax (colapsed lung) In the meantime we are getting on top of his pain..... and waiting for the CT to be read... potassium already coming back up.... waiting.... waiting..... hopefully the chariott will be taking g home very soon...

Godspeed

Thursday, February 7, 2013 10:31 PM EST

thankfully, the blood transfusion went perfectly... no issues at all.. and thankfully it was not raining so G did not have to be drug through rain to make it to the ambulance.... another project to be worked on as our garage in our leased home is under the house - totally useless in our current life....

the PICC project continues.... OSU is in conversation with UPMC and hopefully tomorrow, a plan.... there are so many people involved in caring for G, ensuring that all of his needs are met, and that he has every tool available to him to help him fight his way back... we are dealing with a highly complex situation, and G is very medically fragile...I have said it before... it takes a village... I am so depply thankful from the bottom of my exhausted heart for all those who are invested in this process...

my hope for this night is calm, quiet, peaceful sleep.... I am starting to sound obcessed with sleep! haha...G's mental status has wained over the past couple of days... tonight at dinner he advised Granny and me that once we know where everyone will be sitting around the dining room table we will order a new lawn tractor.... OK G... I think that is a great plan....

hugs hope and love.... Godspeed

Thursday, February 7, 2013 11:43 AMECST

the chariott arrived right on time and took G safely to the hospital for his transfusion... perfect!

ahhhhhhh... not so fast..... as G was leaving I had a call from Oz... one of the bacterial counts is on the rise again..... uh oh....

plan of action... add IV Vanco to the mix.... and the big one, change out the PICC line..... OH BOY... easy to get done in oz, not so much here... a quick call to our local hospital resulted in a NO WAY are we touching that PICC line... I asked Pgh to fax me the order for the PICC and let me do some leg work.... Childrens in Cols? hmm how about OSU... yeah, lets try that.... a quick call, a breif history and a you are doing all of this IV care at HOME???? and then a referral to the PICC team... fax the order and they are discussing it... PRAY THEY WILL EXCHANGE THE LINE.... it will be a few hours before I will know.... if not... next attempt will be the Cleveland Clinic.... maybe I can get them to change it out with the help of Dr Kareem... this is not simple task.... another quick call to our ambulance service and YES they will take him to OSU or to the Clinic.... Please Lord... I leave this in your hands

the vanco will be shipping later today and we will get that on board....

every day is a new adventure.... Granny was asking me about dinner tonight... uh... dinner... uh.. maybe take out, again... we will cross that river when we get there....

for now... G is getting his transfusion, I am working on the change out of the PICC, Mimmi working on the Vanco.... stay tuned...

Godspeed

Wednesday, February 6, 2013 2:32 PM EST

have you ever heard that song there will be peace in the valley one day for me, there will be peace in the valley one day?

without one phone call from me..... our AMAZING home infusion guru MIMMI got G's arensp approved (thank you Barb for all your help on this) and it is on the way to us now

Mimmi also is sending an iv pump for our albumin because the gravity is just not getting it.... our 1 hour infusion takes well over three hours... that is not working effectivly... another problem solved

the orders for G's blood transfusion co signed and he is all set for 10 am... the charriott will arrive around 9 am to get him there safe and sound...

I told G we crossed many a mile today... now if tonight, we can just get some sleep....

all is well in the valley, out here in woods, behind the lake....

Godspeed

Tuesday, February 5, 2013 12:20 PM EST

I knew this day would come... and what would that plan be? when that day, the one that noone seemed to want to talk about would happen? and what would the plan be? Good thing that I am always looking for plan B...

it has been a long, exhausting, and WILD day out here in the woods.... G's blood work came back (thank you again nurse Trish for your hard work) and G's HH had fallen to 8/24~ I knew immediatly that G needs blood... hmmmmm

G can only have irradiated, CMV safe blood... common to those who dwell in Oz.. not so much at our community hospital...sooooooooo, my suspicisions were confirmed by a phone call from Oz telling me, G needs a transfusion... first we need a type and cross... OK... Nurse Trish will come to the house which by the way is buried in snow and pull the type and cross after picking up the necessary viles from our local hospital... HIT THE BRAKES... per the house supervisor at the local hospital, NO WAY are we going to pull a type and cross at home and bring to them... we need to BRING G to the local hospital... OUY VAY~ how do to this.. how to do this....

a call to a local ambulance service, a fax of an medically necessary statement to oz and back to me, then to ambulance service meant that they would come and transport G to the hoepital for a 45 second blood pull...sounds so easy huh? well this took roughly 9 phone calls and 2 hours to acomplish and another 1 1/2 hours waiting for the ambulance to arrive (which allowed plenty of time for me to shovel the path from the road to to the house) but in the end G was safely taken to the hospital and the type and cross done with the ambulance crew who was totally awesome safely bringing G back home~ next puzzle for the day

G needs an injection of arensp to try to boost his red count quickly.... ok then... with Pgh (thank you Barb) and our amazing home infusion supplier BOTH working hard for hours to obtain approval from insurance for the VERY pricy injection; hours and phone calls past like water flowing over Hoover Dam....good news was, forteo injection (also very costly) was approved (hopefully to help g's bones following 2 spinal fractures L4 and L1) Still as I type, trying to get the Arensp approved for injection on Wed (we needed it today but...).... which leads me to Thursday.. the day our local hospital THINKS they can have the blood for G....which by the way our local PCP who has not called me back yet from when G needed blood in February 2012 when this adventure first began, must sign off on (as awesome as Costa is he does not have privileges at our local hospital) This too, still in process but I am happy to say that after being an awesome detective I was able to secure the apparently secret fax number of our PCP and faxed the instructions and the paper work to him for signature since I COULD NOT get anyone on the D*** phone... fist note of tomorrow morning~ call PCP~or fax again, to be sure he signed and faxed our blood order from Costa to the house supervisor at the local hospital so G can once again be hauled by ambulance (tada~ already approved) on Thursday to the local hosp for his transfusion of the blood that I am praying they get thier little hands on....

all that being said I just realized I did not put the darn Forteo in the fridge as soon as I got home... uggggggggg.. please Lord do not let this drug be ruined...another call first thing in the am...

upon my arrival home from town (thank you Granny for keeping an eye on G) (had to pick up at the local CVS-thank you Erin for all your help) my oversize cooler of TPN and giant box of medical supplies was waiting for me in the falling snow on the front porch....nuf said....

hopefully, I can fall asleep... I can turn off my brain (shut up please) and go to sleep.... IV runs start at 6 am...need to go to sleep

please NOTE~ I am NOT whining... I am so deeply thankful to be home I don't care what it takes to to this, we are going to do this.... I am just sharing one day out of day after day of life providing intense medical care to one very brave warrior who I am proud to call my kid...did I mention that while doing all this, I work?

Godspeed

Monday, February 4, 2013 8:13 PM EST

the hard work of G getting back on his feet has officially begun... PT here 3 times per week, OT here 2 times per week, aide here 3 times a week (not sure where she was today but.. maybe lost in a snow drift) and our nurse Trish will be here 2 times a week.... by the way, Trish our nurse, TOTALLY AWESOME!! and MIMMI our TPN and drug supplier, SHE TOTALLY ROCKS!! Barb our coordinator in Oz.... she has been totally, totally AWESOME ~ we so appreciate her....

tomorrow bright and early I will shovel out to the road AGAIN so our good ole drug delivery guy can make it in to the house with those heavy boxes..

I took today off work to take Granny to a much overdo and needed appt with her Dr.. however, becuase there is so MUCH SNOW had to cancel... sooooooooo... spent the day grabbing some much needed naps, doing laundry, putting away boxes, and catching another nap.... ahhhhhhhhhhhhhhhhh just what I needed... will be at work bright and early tomorrow...

keep Michael in your prayers this week....we love you honey....

I am hoping for a sleep through the night for G soon... all in good time.. steady as we go.... so far, stable, ... it's all good...

Godspeed

Saturday, February 2, 2013 9:34 AM EST

first weekend at home and we are being reminded it is still winter in OHIO ~~ the snow is falling down and piling up...

all in all a good week for G.... one night of distention and pain after making an attempt at a teaspoon of noodles... we will be sticking with popsycles for now...

G is awake today and making sense... he called his S Ga Momma and left a message.... IV runs are going well and we now have a scheudle in place.. first blood pull GOOD report (G must have an AWESOME nurse- haha)

our home nurse comes, pulls the blood, checks vitals, carts blood and d diff samples off the tho the hosp which I so appreciate....hopefully by the end of the weekend G and I are both getting a little more rest....

all is well.. all is well..

Godspeed

Wednesday, January 30, 2013 9:07 PM EST

let me just ask.... where would I be without all of you who just keep walking beside me and helping me push forward... when I feel depleted I come to the bridge and there you are... picking me back up, standing me on my feet, and renewing my strength....

I love you all so much....from the depths of my heart, thank you....

G has had a very good day... he was awake for awhile and talking to me making perfect sense! He even smiled when I called him sponge bob (one of his dressings is a sponge material so... I mean, who does not love old sponge bob)

a quick chat with our interventionalist in oz did bring a slight fix to the sluggish PICC lumas and our albumin went right in tonight no problems...

I am looking forward to hitting the hay right after the last IV run of zosyn.... about 11:30ish....

hugs hope and love

Godspeed

Tuesday, January 29, 2013 12:03 am EST

the air is warm outside, odd for a January night.... I have not see television so I have NOT A CLUE what the weather is looking like....hopefully winter will hold off for a few days to allow me to make it to town to grab some needed supplies~ as this busy first full day of G being home comes to a close I am mindful of so many who are doing what I am doing on this very night~....caring for someone who is extemely fragile.... it is very hard work.... but done with love~ I am so thankful for the good teaching I have had over G's life... there is not a drug I do not understand or cannot administer, a dressing I cannot change, or a vital I cannot get, or a lab result that is foreign to me, or a drain who can outwit me (make me mad, oh yes, but out with me, no way).....thank you Lord for all my great teachers....

my back is killing me, and my legs feel like I have ran a marathon...my arms ache and my elbows are begging me not to haul one more piece of luggage, medical supply box up the stairs from our garage.... just a few more to go I tell my self...oh yes.. need to hop down and toss G's sheets in the dryer so I can change his linens tomorrow~

I am hoping that tonight provides for a bit more sleep than last night which produced only 3 hours....G was adjusting to being home, the house has turned in to a medical supply warhouse, the dining room table is covered (and I do mean covered) with yet to be sorted and organized meds, the kitchen has for the most part disappeared being hidden in flushes, needles, IV lines, a medicine refridge which is bursting at the seems with TPN, zosyn, albumin, and benedryl (I know I am forgetting one... hmmm) amd G's actual bed in his room is covered with supplies orgainzed but waiting for me to find them an accesible home~(hope they are patient)

today we met with our intake nurse for home care... I am learning that having a home care nurse means she will be here to draw blood and cultures twice a week and thankfully drop them off to the local lab, monitor vitals that I take three to four times per day any way, draw interesting pictures of the many wounds I am working so hard to heal (nice job G of leaving them ALL alone since arriving home) and learning to pronounce medication names that she has never seen before while asking repeatidly why this, why that, how did you get to this point again? a triple luma.. wow... have never seen that before and what holds this thing in place again? (g's new Picc has it's own website as there is a metal clamp under the skin holding it in place - don't yank that baby out) PT was here today but could not make thier needed evaluation because opsie, UPMC did not discharge G.. WHAT?????????? he is here, in Ohio, really, I am looking at him, trust me.... PT will be here tomorrow which I am very excited about~ (not so sure G shares my enthusiasm)

tonight as I await the TPA to finish cooking in one of our lumas I am thinking of my friend Darlene.... she cares for her hubby who is struggling and she herself is doing battle with breast cancer.... I know how exhausted I am with keeping up with G's needs and medications, drains, dressings, and my still need to make ice tea (note- do this tomorrow)... how does she do this? maybe Hugh is not requiring all the meds that G is getting but Darlene is, well, not a spring chicken herself (with all due respect my dear friend) and her family who respectfully, like most families do not get it (no fault of thier own), are all in Arizona... Darlene.... you are on my heart tonight and we love you (make a note to myself, call Darlene tomorrow)

tomorrow I will figure out how to go to the grocery store and pick up meds for Granny - another note to self, run through G's meds to check for any needed refills~oh yes, and transfer my own rx's back to Ohio~ find time in the early hours for a long shower... it will be a busy day at work and a busy day for g... I feel like I have a better handle on the med schedule so tomorrow will be a better day~ I am promising myself to make a nice dinner for Granny by the weekend... hang in there Granny..and thanks by the way for loading the dishwasher... so appreciate your help~

TPA is almost done, the bathroom has had it's nightly sanitation, the doorknobs have all been wiped and this camper is ready for some rest... please little ostomy... just be happy until tomorrow~ I promise you are high on my list....and thank you Lord from the bottom of my heart for allowing me to bring G home.... Amen~

sweet dreams~~

Godspeed

Monday, January 28, 2013 10:11 PM est

as the quiet darkness of the night fell over the valley that we call home, peace surrounded us out here in the woods, behind the lake... the guys from the fire dpt were here to meet us and delivered G safely to his awaiting gel matress hospital bed which was waiting for him with his favorite blankets, his Christmas bear from Patty, and his favorite squishy pillow....

the TPN delivery was right on time and tomorrow his albumin, lasix, and antibiotic will arrive (a slight little opsie - no biggy)

on the way back in the woods I drove G by his old fishing hole.... I am going to get better Momma.... I know G.. I know...

all is well..... ~ Dorothy, click your heals three times and say, there's no place like home, there's no place like home, there's no place like home.... thank you Lord for your allowances in our lives....

Please pray for our dear Michael who is doing battle with the FLU and Pneumonia... gracious....

continue to pray for G, for me, for Granny as we move forward.... and pray for the warriors we leave behind in Oz... I need not mention all the names but if you are stopping by the bridge know that we love you and hold you near in our hearts...

sleep well.... sweet dreams...

there's no place like home....

Godspeed

Saturday, January 26, 2013 1:01 AM EST

on Monday..... weather permitting, we are taking G home... home to Ohio home....

we have his PT, OT, nursing, blood pulls 3 times per week, bacteria pulls 2 times per week, cdif sample 2 time per week all set up.... now just need to get the TPN, zosyn, iv cortef and albumin set up~ his hospital bed is there waiting, ready for him to climb in and this time, a bed alarm will be in place.... no more climbing out of bed and falling... NO MORE FALLS

the first two to three months will be quite intense..... G needs constant care around the clock and cannot be left alone.....he needs that care at home....it is our only chance to get him back to his baseline.....and back on track...

I am so thankful this did not turn in to an disagreement or argument with Costa.... he agrees... there is no place like home...

we have many hurdles to jump, many rivers to cross, and many things that are going to demand drastic measures.... one step at a time... pray for me as I work to address everything that needs to be addressed, and make the changes that need to be made to ensure everyone is safe, in the best enviroment possible, and that my steps are correct to the Lord's will and plan...

being in charge has proven much more productive than just being....I have never been a very good follower....

Godspeed

Friday, January 25, 2013 54:38 PM est

Sometimes the smallest step in the right direction ends up being the biggest step of your life. Tip toe if you must, but take the step. ~ from Positive Outlooks
(thank you Nancy for allowing me to share)

over the last two days, I have taken charge.... no more trusting others to get the job done and G has made amazing progress in just two days... today he walked well with his walker and later in the day survived a shower that he had to walk to......we ran in the the phys therapist and he was quite surprised.... he said you didn't wait for me... I am tired of waiting....

Carissa and her Mom stopped for a visit but sadly we cannot let anyone in.. so we door chatted.... it's all good..

I am hoping for some rest tonight as I am exhausted....

Chelsea our sweet little dog has the flu.... yes, she was taken to the vet, confirmed and treated.... now she is getting flagyl rather than g.... thank you Ash for taking such good care of our baby....Get Better Soon Chelsea....we love you so much...

there was a big snow today....well by Oz standards a big snow....not by out behind the lake in the woods standards...but any snow in my opinion is too much

thank you so much for your kind notes left here on the bridge.... when I start to feel like I cannot do this one more day, I just come here and get picked back up on my feets again.... bless you all so much....

Godspeed

Wednesday, January 23, 2013 6:23 AM EST

I am so happy this morning as the ostomy applicance applied late last night stayed in tact the entire NIGHT! This is for sure the ostomy from hell... the issues are.... the loop is almost, not quite, at skin surface level (slightly below sea level if you will) and G is very thin.... so we are dealing with a concave surface rather than a more round surface to attach the appliance.... of course we are THANKFUL that g is not distended...

G did a great job of walking yesterday with his walker.... he still is not able to walk on his own, unsupervised with his walker.....but at least he is upright and walking...

I am feeling anxious to see his labs today.... hoping we are making progess on his count them, 10 bacteria and 1 wayward yeast infections.... progress feels so slow to me... my uh, not so patience is showing through...

G's skin..... well that is a whole different story.... his arms are still covered with lesions, his abdomin is not healed and actually has a little hole in the upper right section just beside the incision... it is very itchy which makes G want to mess with it... IRRRRRRRRRRRR

this road seems so long... and maybe for the first time I feel like the not having a clue where it is leading is the worst part.... it is weighing so heavily on our entire family.... this has been so much more stress filled than even the transplant...I feel like just the emense period of seemingly never ending time is playing a huge role in creating this feeling... I think of home... everything is ready for G... his hospital bed is made, his big blue quilt is on it, the pillows are fluffed... nursing is in place, the med refridge is cold and ready, everything is sparkling.... but how do we get there? hmmm...... a snow storm is headed in for Friday so I am thinking maybe next Friday? we will see how labs look by the end of this week and in to next week and how stable G is at standing up and not falling backwards....

Godspeed

Sunday, January 20, 2013 2:14 PM EST

a decent day for G... smiles~

we are trying to transition off the IV dilaudid... hmm... we will see how this goes... HH did not rebound as we had hoped yesterday but for today we are holding out... no blood today but did have to add the dreaded caspo ~ yesh

G is awake for the most part today and looking around on his laptop! WOWZA! he said... geez... I have lost alot of time Momma... how long have I been here again?

for today, we are thankful for quiet, and for open eyes and a not too bad mind... we are not worrying about any of thost STUPID blood counts, badteria counts, yeast counts any of that STUPID crap.. just enjoying the day, the blue sky and waiting for football..

Godspeed

Sunday, January 20, 2013 6:47 AM EST

"Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus" (Phil. 4:6-7).

I was reading last night what Charles Stanley had to say about anxiety... Anxiety interferes with sleep, disrupts concentration, and hinders productivity. But children of God don't have to allow this destructive emotion to control their lives. Even when believers live through painful circumstances, they can experience peace beyond human comprehension.

In some of the most difficult moments over the past 8 months I have felt total peace...even though I was painfully aware of the potential of the issue with which we were dealing.. I have known always, that it is only through grace... I try to stay calm, not allowing panic to grab hold, I concentrate on this telling myself, stay calm, don't panic.. you won't be able to think clearly, make the best decesions if you panic... calm... calm... for a long time, for as long as I can remember I have always said to G before a surgery.... I will be right here waiting for you and when you wake up you will not be alone... either I will be holding your hand or Jesus will be holding you.. OK Momma...don't be afraid G....don't be afraid... I constantly refer myself back to Psalm 46:10 BE STILL AND KNOW....

be still and know.... so much more powerful than anything the docs can tell me despite their efforts to assure me...I told Dr Sogawa yesterday... I understand that you are doing what you do.. you are a Dr... beleive me, I am assured... believe me...there are powers at work much greater than any of us here in this place...

G had a quiet night over all... I am anxious to see his blood work from this morning to see what the effect of the cyro is from yesterday.... I am awiating the conversation with Costa regarding a biopsy IF in fact the bleeding continues...my personal belief is even if they do a biopsy as in the past months they will see nothing and I am not sure it is worth putting G through another one...if this as I suspect is a micro bleed (tiny vessel, but alot of blood)they will not be able to see it anyway as we learned in the past through multiple endos, flexies, and even nuc med studies~ I am not in any way of the intention to withold medical care for G.... I am not giving up and not giving in... just want to carefully weight the potential benefit of putting G through more pain and suffering, and weighing the potential risk to him of the procedure vs the benefit.

I have decided to do some research on the rehab floor, talk to some people, gather more information... listening to my gut on this one... listening... I told them yesterday we will cross that river when we get there..

right now, we are not there... my concentration is on the river that right now lays before us

Godspeed

Saturday, January 19, 2013 1:23 AM EST

today g is having some bleeding from the ostomy... I have requested no more biopsy's be done... I am not sure how long that will stand but for today, no more..

he will get another unit of blood today and a 6 pack of cyro to hopefully seal up whereever this blood is coming from... pain meds remain the same... .5 dilaudid every hour with a 1 mg bolus every 2 hours... seems to be ok for now.... tomorrow we will try moving the pain meds out but... tomorrow is a long way away....

Decesions must constantly be made... big ones, little ones, and I have learned over time how weary illness makes people... even those who love you the most and those that you hold the closest... the conversations that have to happen, the questions that must be asked, and issues that must be faced.... noone really knows or can grasp the complexity unless they have actually skipped along this rugged path.. It is much easier to keep all of this at bay, to shield one's self from it all allbeit temporary...

Nancy shared a lovely poem of prayer on my FB... I read it so many times... I read it to G as he feel asleep listening to my voice.... it was lifting and comforting, it was strengthening... I have learned to be a very good decesion maker and am so thankful that I do NOT have to consult with a spouse as many of my decesions must be made quickly and I must move forward.. over every decesion, I pray... Lord.. guide me and without fail, He does..for which I am so grateful...

the sun is shining today and it is mild....

please lift Michael in prayer as he struggles to deal with his grief and horrible pain of loosing his most precious Karen...

But he told me: "My kindness is all you need. My power is strongest when you are weak." So I will brag even more about my weaknesses in order that Christ's power will live in me.
2 Corinthians 12:9

Godspeed

Friday, January 18, 2013 5:17 PM EST

the culprit identified....multiple bacteria in the urine... nice... so we will add zosyn to the unison and the vanco... rethread the line..... sadly G is once again, very sick...

it does not take much....

I watch G as he lays here with his red face, sleeping and being brave in the face of nausea and pain.... I wonder to myself.... how much more? How much more can he endure, must he endure... how much does one person, one body have to fight through, live though... G is a warrior... very brave, and such a good patient... he never complains, always says please and thank you...

Lord.. once again, I know I am a broken record... please, provide comfort first and foremost... and let Costa get some rest.. Amen

Godspeed

Friday, January 18, 2013 2:01 PM EST

this morning blood work looked good.. HH up (thank you blood donor whereever you are) and the only thing needed was 2 runs of potassium...

that was this morning.....

now we have temp and G is sick.... have given him 500 Unison, 1000 Vanco running now... zofran to help quiet the nausea (did not work) and waitin on phengran to kick it in the pants...

G has a very red face (allergic to vanco) and is being as quiet as he can.... this all happened 15 minutes ago and I already feel totally exhausted all over again... I really think it is post tramatic stress.... only we don't seem to get to the post part....

Costa has been called and we are going to get his PICC changed out.. maybe a line infection.. maybe a UTI....

time will tell..... this is a blow that G did not need....

keep him in your prayers...

Godspeed

Thursday, January 17, 2013 1:23 AM EST

G will need some blood today but to my surprise it did not take all afternoon to get it.. running as we speak...

G is tyring to make progress on his rehab... hard, hard work... frustrating for him.... one one hand, he is working hard to be able to stand alone, keep himself steady, put one little foot in front of the other, and not tangle up his feets... working to get out of the wheel chair.(personally, I think he simply has no appreciation for my wheel chair driving ability~ haha)

on the other hand... there is the entire inital issue of his intestine and stomach which continue to be on vacation.... as soon as SAFELY possible, we need to get G home... quality of life keeps coming to my mind; the broken back was well..... a bump as we say.... a major BUMP.... I am not 100% sure on the status of the health of his nerves in the L1.... they are in tact but, there is alot of numbness in his legs and feet... of course, we cannot tell about the nerve that goes to the lower abdominal wall becuase it is on vacation any way...

one day at time.. for now.. we continue on... working hard every day to get G back on his own 2 wobley soon to be stronger feets..... then, we will be over the 3 rivers, through the woods to home... it is just not going to be any time soon....

hang tough G.. keep fighting buddy.. keep fighting

Godspeed

Tuesday, January 15, 2013 11:48 AM EST

today G begins a new phase of his journey.... I am so proud of him today! (well, lots of days, but today in particular)

I have tried to take a step back so that he would hopefully be able to take charge of his rehab and physical therapy and he is doing just that.... I've got it Momma.. I've got it...

his walking will be expanded in a controlled enviroment but believe me, they will be pushing G.... this will be a daily grind for G.... I told him it is going to be hard hard work but he can do it.... it will pay off in the end because he will be able to walk again.... he has a difficult time feeling his feets, so it is hard getting them to head in the right direction when he wants them to... but.. one little step at a time.... G is well aware we can have NO MORE FALLS whatsoever....and he does not want to be stuck in a wheel chair..

his abdominal issues... well... status quo... nothing has changed... the broken back was just a bonus I guess on top of all the other stuff G is dealing with ... again, one day at a time.... I have been talking to G about going fishin to catch ole Marvin... hangin at the lake, sittin out by the fire, just chillen.... we can get there G... keep fighting forward buddy...

hope you all are avoiding the FLU! Shelby and Mich have strep which means Jas and Grady will not be far behind~ my neice Deana has been sick for a week and cannot shake it.. so far, so good on our end.. staying away from everyone we can!!! (wish we could avoid the hospital but.....)

for today, keep up the great work G.... keep it up...
I write from the sidelines~~

Godspeed

Monday, January 14, 2013 7:00 PM EST

G is doing well..... such simple little words..... so hard to believe...

the projects are gaining strength and balance - today the walk was about 15 feet and back - at a better pace and not quite so much trouble keeping his feet headed in the right direction....

arms... well, not much good to report there... alot of healing is needed.... and G... well he just cannot leave them alone :( distressing~

bloodwork today, good.... did not even need potassium...WOWZA!

G's mind is becoming more clear... not perfect as of yet but, doing much better....

speaking of minds... last night while driving the car I happen to think to myself... hmmmm January.... hmmm.. I did not renew my license plates! AHHHHHHHHHHHHH instant panic!!!!!! early this am, I headed to East Liverpool to take care of that (yesh) guess I have had a little on my plate lately (they were do in uh, Novemeber-yikes)

continue to keep G in your prayers.... we are working so hard, have so many great people on our team.... and G... G is working very hard....

Godspeed

Friday, January 11, 2013 54:22 PM EST

soooooooooo with the help of phys therapy, G walked with his walker about 12 feet! made a U Turn and then back!

NICE WORK G!!!!!

G is making progress but really needs to work hard~~ there is alot of ground to cover!

today is Kevins birthday~~ his family will release baloons in his memory, and one for G for strength~~ Thank you so much to our South Ga family! Happy Birthday Kevin! We love you and miss you so much~

Godspeed

Thursday, January 10, 2013 1:20 PM EST

Hearing this, Jesus said to Jairus, "Don't be afraid; just believe, and she will be healed."
From Luke 8:50

Today G will move from Trauma ICU to 11N – back to transplant land… we know of course that G has a very long way to go….his abdominal issues have not changed… we simply had a side track with a broken back… G’s back is doing very well…. We are pleased and excited at his progress and so thankful to the Lord for His mercy and to Dr G for putting our Humpty Dumpty back together again…
the hard work now begins with rehab … learning to sit, stand, and eventually walk all over again….

We are going to work even more aggressively to address the issues with G’s fragile bones…. Maybe we will add a 2nd treatment of reclast (another insurance battle) and will probably add Forteo… we will see…. But for today…..G’s back is broken no more…… and we march, well G will roll, forward

Godspeed

Wednesday, January 9, 2013 8:15 AM est

this morning I was greeted by an awake G! Wow what a surprise... to top it off, he left his bandages alone all night YIPPPPPPPPPPEEEEEEEEEEEEEEEE
THANK YOU G!

this morning G is stable.... vitals are all good with the help of his medicine.... pain is still there but not as bad as yesterday.... each day should be a little bit better... we are not disillunsioned, G will never be pain free.... but as long as the I AM READY TO SCREAM and I CANNOT BREATH pain is gone, we are happy..... the ostomy is producing fluid once again which we are very happy to see... we are working to bring G's amonia levels down (so he will be on the same planet as the rest of us) and making good progress.. G was talking about football very first thing and once again asking about Chelsea.... so nice to see you again G....keep fighting your way back buddy~

I am HOPEFUL to move to 12 N today.... will let you all know....

also.... an update on our friend Matthew who is across the hall (severe seizure leaving him in a coma) is showing signs of waking up... during the night his Dad was went in to see him and Nurse Joe said hey Dad... looks who is here! Matthew looked directly at him and followed him with his eyes across the room.... COME ON MATTHEW.... you can do this.. keep this brave young man (who has a wedding date in June) in your prayers.... progress...and praise to the Lord....

Godspeed

I will be updating later today...

Tuesday, January 8, 2013 10:00 AM est

first day post op~ steady as we go..... phys therapy came and got G up in a chair...where he is sitting as I write....asleep at the moment.... today we are hopefuly to move to 12 N... home turf for us....

your notes left here on the Bridge.... move me, touch my heart, and lift me.... I so deeply apprecaite knowing you all are with us..... we do not climb the hills alone...

the Lord has so blessed us.....

Sue... we are sorry to hear that you have been in the hospital! gracious.... we are hoping that you are much better and enjoying being at home.... sending our hugs...

I posted a pic of G today sitting in his chair....

Godspeed

UPDATE 3:20PM
I have recieved word that Gary can have no outside visitors at this time. I so appreicate that some have expressed the desire to come and sit with or visit G.... there is a flu/pneumonia alert at this time... many tz pts are being admitted with both.... so at this time I am sad to share that G can have no visitors.... hopefully this crisis will pass very soon... we have to keep G as safe as possible as he cannot fight off another illness in his weakened state.. thank you for your understanding and love

Monday, January 7, 2013 10:02 AM EST

surgery over.... repair successfully made and cemented.... the narrowing canal cannot be repaired as this is too dangerous ~ nerves are in tact.... there are 6 rib fractures in there as well.... the surgeon said G cannot sustain another fracture.... he will be in the PACU for a while as they work to get him off the vent... then to ICU for at least overnight, then to 12N for at least a couple of weeks, then to rehab.....

one day at at time for for today.... surgery over, damage repaired and cemented ..... now just need to get off the vent and back to ICU.... all is well...

Godspeed

3:58 pm G is back in the Trauma ICU, resting quietly, off the vent, vitals good..... most likely tomorrow, to Transplant Step Down on 12N... familiar turf.... Blessings ....

Godspeed

Monday, January 7, 2013 76:36 AM EST

WOWZA... this post may not mean much to those who have not been here in OZ.... but to those fellow tz warriors... you should probably sit down...

I have been most impressed with the Presby PACU and Surg Waiting Area.... first off.... I was in PACU with G the entire time.... everyone was NICE, Friendly, Welcoming.... a pleasant surprise from Monte... the waiting area... BEAUTIFUL and comfortable, relaxing... the people in here, so NICE.... can I get you a fresh pillow, do you need a blanket... have you had something to eat... can I get you some coffee..... WOWZA..... they have it right over here.... MUH... come take a lesson....BENCHMARK PUH....

G was brought to the PACU by 2 nurses.. his night nurse and a helper (there is alot to push, bed, pole, manage the drain hose from ileo, cath...) He was met by the anesthist who will take care of him in the OR, and Dr G (neuro surgeon).... Dr Costa was there (simply amazing - I am starting to think he has a cloan....) to oversee and be sure everything is being done to his standard and order for G... INR is up... will need platelets, 2 units of irridated, CMV neg blood on stand by, antibiotics on board and running, and call my pickle ph if any issues whatsoever.... I have to say again, even under the helm of Kareem, G was never so well cared for....I am so thankful...

not sure how long this will take... it is a bit of a mess in there... but Dr G said he is going to get it fixed one way or another.... he will come see me when they are done...

I feel that G is in the best of hands... well cared for and covered in prayer..... it will be a long day.....it's all good...

Godspeed

Monday, January 7, 2013 4:37 AM EST

G's nurse just heard from PACU and G will head to pre op at 6:30 am for a 7 am start time....

he has been resting well through the night with no issues~ (fever, bleeding etc) I figure both he and Dr Gertzman are well rested for the morning~ surgery will be complex but prayerfully the reconstruction, repair is successful....

keep G and Dr G and team in your prayers..... update to follow

Godspeed

Sunday, January 6, 2013 7:48 AM EST

Sunday… We just need to get through this day and to the OR tomorrow… we are really, really hoping to be first case~ time will tell… no temps, blood levels being managed and holding, continuing with the Vanco to protect against in infection~

As we all gathered last night at 8 pm to lift G and his dedicated team G rested quietly… the night remained quiet thanks to the continuing doses of pain medication~ Peace prevails…

So many gathered across the country to pray together for G… from this Momma’s heart… thank you~ G is a warrior and has fought a great battle…. He continues to fight and his team is doing everything they can to help him…we are anxious to make it to the OR tomorrow… anxious for the outcome of the surgery~

Keep us in your prayers~ it is only by grace… also remember Matthew (struggling after a severe seizure in Trauma ICU) and Dane in the TICU with multiple post-transplant issues…Karis, Maria, Carissa, and Matiese… all the brave warriors here in oz…
Godspeed

Friday, January 4, 2013 3:09 PM EST

just 2 days to go... we can do this...

G has done well today, quiet, and awake from time to time....good job G... hang in there buddy~~

JOIN US! LIGHT UP THE NIGHT IN PRAYER FOR GARY~
SATURDAY NIGHT, JANUARY 5, 8 PM
FLIP ON AN OUTSIDE LIGHT, AND LIFT G BEFORE THE LORD~ ASKING FOR COMFORT, MERCY, PROTECTION, AND BLESSING FOR OUR TEAM WHO IS WORKING SO HARD ON G'S BEHALF
PLEASE SHARE... THERE IS POWER IN PRAYER .... HUGS HOPE AND LOVE~

Godspeed~

Friday, January 4, 2013 5:29 AM EST

I have had a few emails asking, what is wrong with Gary? I sincerely, from the bottom of my heart, apologize... over time I have become so acustomed to speaking with doctors, looking at CT's, learning about MRI's ...... I want to be sure you as our prayer warriors understand what we are dealing with...

Gary has a broken back, for the second time(first was L4-lower, now L1 higher)... it is just a little below the mid point.. Lumbar vertebrae (hence L1,2,3,4,5) are between the rib cage and the pelvis. They are designated L1 to L5, starting at the top. The lumbar vertebrae help support the weight of the body, and permit movement. There are two nerves that live in the L1..The ilioinguinal nerve – performs sensory and motor function and the iliohypogastric nerve which performs sensory and motor function for the abdominal muscles and the skin of the lower abdominal wall~ both of of course of major concern since when the vertebra fractured it pushed in on the spinal canal and created a narrowing of the canal from L1 (higher) to L4 (lower and previously repaired 3 weeks ago)

you can imagine how extremely painful this injury is... What we are trying to do is keep G completly still... literally no movement what so ever to avoid permanent damage to these two nerves....G is laying at a sharp angle to keep pressure off the spine (and constantly slide to the bottom of the bed which nearly touches the floor- so they are constantly pulling him back up to the top using lift pads) We are closly watching for any signs that we are loosing ground, that there is bleeding, if urine output slows, if ostomy output slows or changes.... one of the issues with keeping him so still is fluid collection in places where is should not be...(3rd spacing) lungs, hands, feet, legs, around the heart...another issue is, infection...G has a supressed immune system... bugs are lurking everywhere no matter how clean an enviroment is...

first and foremost, it is important that you continue to pray, lifting G before the Lord, laying him at the Lords feet... I wanted to be sure that I am clear on what we are dealing with so that you know how to pray... I cannot begin to tell you how much it means to me, to our family to know you are praying for us and with us.... it allows me to close my eyes at night and rest.....

so many of you who have been on this journey through all the valleys and over all the mountains.... I have never met....many of you I have known all of my life, and others, I have known most of it.... let my words reach out to your heart as yours do to mine... we love you and thank you for your capacity to care, to love us, and your desire to pray.... my words cannot begin to properly thank you...

G had a quiet night.. no issues, good drugs, and no movement... good job G.. we love you..

Godspeed

Thursday, January 3, 2013 9:38 PM EST

the name of the game today has been stability..... med adjustments, blood infusion, repositioning, albumin and lasix to try to address G's rapidly increasing 3rd spacing... mostly in the extremities... there are leg pumpers in place which typically in our world, are tabu these days... (will make mental note to talk with Costa about this...)

G is still able to take his pills by mouth when we agressively awaken him... we are being forceful about this to avoid the insertion of an NG (nose) tube which would be used for meds only.... we are clearly telling G... open wide, suck the straw, or............. he shakes his head no...ok buddy...we will do everything we can to avoid the tube.... keep working with us here...

we are thankful at this point to be located where we are~ in Presby (odd for us) and in trauma icu ... HOWEVER I am quickly understanding we are a bit of an unwelcome guest... don't get me wrong... the nurses have been really awesome... the director was very pleasant when coming to see the transplant pt on his unit... the resource allocation director however is making it very clear that we are not particularly loved or welcome here... she is saying she is getting G moved to the Neuro ICU... she is speaking to the director tomorrow... the same one Costa has been talking to.. I do not feel overly worried but it is rather uncomfortable being the odd man out... this poor pathetic allocation director should prepare for battle and plan to loose... the only way I am letting G leave that unit before surgery is at the direction of Costa... ON GAURD~

speaking of odd man out.... in the TICU waiting area first of all, it is extremely small... AND, typically, there is only one and on occasion two family members there.. almost always 1 (probably because in TICU it tends to be a long stay and people get burnt out) here in trauma icu HOLY cow there are entire families! It is so interesting to observe... each group tends to circle the wagons so to speak..one in this section, another in this section, yet another in this section.. and then there is me... the COT lady... the one with the transplant kid....over here in my little corner, with a great view of the sunrise, and the only multiple outlet cord in the entire JOINT AND the only COT!! haha....they tend to complain alot about the waiting room... but wow, there is coffee, a soda machine, snack machine, large bathroom, 2 tvs.. I mean as far as waiting rooms go.. uh a palace compared to TICU~~ well, as I say, it is interesting to observe.... May each of these warriors here in this ICU be covered and bless by God.. they are fighting...

G is resting quietly and the tremors have stopped thanks to Dr Costa making constant changes to his meds.... we are keeping him quiet to protect his spine from further damage until we make it to the OR... steady as we go..3 days to go...

I am thinking about organizing a G's Lights On Night of Prayer! How it would work would be.. there would be a set time, and all of our incredible, faithful prayer warriors would stop at the same moment, turn on an outside porch light and say a prayer for G .... let me think a bit on this...sounds so powerful!

for now.... pray for my girls... Michelle and Ashlee.. pray for Granny... this part of the journey has been incredibly hard for them.... harder actually than the actual transplant in so many ways... please continue to lift G.. he is hanging on and fighting so hard.. doing everything exactly as we tell him to do.... lay still, do not move your legs, keep your arms quiet, don't turn your head....your doing great G... your doing great..

Godspeed

Wednesday, January 2, 2013 11:33 PM EST

pain management.... the word of the day.... quiet has come to G... he is sleeping... Thank you Lord for this gift....

anesthesia is helping out with pain control with Costa at the helm... he is not sedated, but.... well, there is a lot of narcotics on board....

Vanco was added today to help us protect G from any potential infection that would kick us of the OR list... that cannot happen... the surgery will not happen until Monday (yes, Dr's do take vacation, well some of them anyway) Dr Costa wants this particular surgeon...so, we wait it out...

G will remain in the Trauma ICU rather than moving to the TICU..... there are not sick people in the Trauma Unit... they are seriously injured, had a stroke, suffered a seizure etc etc... not carrying some unknown virus, bacteria, or heavens only knows what else... we are trying to protect him from everything we can right now...

I set up my cot, I have my blanket and am ready for some rest....

your messages, your prayers, you incredible support are such a gift... you keep me going, encouage me, and give me strength.......

Please pray for protection, comfort and healing....all things are possible to a beleiving heart..one little day at a time...

Godspeed

Wednesday, January 2, 2013 6:11 AM EST

I never really think about what I am going to share here on the bridge…. It just comes from my heart and the circumstance of the moment….. I did however have great anticipation of sharing my thoughts of G’s first night home… safe and sound after so many months away… of Granny sleeping quietly knowing she was not rambling in our home alone…these things were not meant to be…

We left Oz at 4pm in a very hard snow storm… a quick stop at CVS to pick up more Rx’s and we were headed west… we are on a great adventure Momma G looked over and said and then peacefully fell asleep… we left Pa heading straight in to W Va and as we were making our way across the river in to beautiful Ohio the ostomy appliance broke… OH NO Momma what are we going to do… I am sorry Momma… no worries G… here is a towel, hold it as tight as you can, and we will hit the next hospital! It was not far and we only needed a place where I could lay G down for 10 minutes.. Turned out, 10 minutes is hard to find in a ER… resolution? A quick hop through the snow for a sterile pad, a lonely couch in the corner of the waiting room, and thankfully, my bag of emergency supplies – a pre cut base, a wafer, new bag, sterile water, surgical sponges, trash bag, and extra shirt~~ within 15 minutes, repairs made, skin safe from burning, and we were back in the car headed on our journey… This brief inconvenience had given the salt time to clear the roads… clearing out path home…

Just as they had promised the boys from fire dpt were right on que… I made the call to them when we were 45 minutes from home and great anticipation was present in our car.. as we neared the fire dpt, the boys were waiting in the drive.. the big squad pulled out in front of us, the pick up followed behind us… Momma… it is like a parade around the lake, back to the woods… yes it is G… yes it is…
Arrival was wonderful… The boys put the big spot light on so they could have clear vision lighting up the entire front yard, cleared the path, plowed the drive yet again, and opened up the carry chair…

G was nervous to traverse the snow in a carry chair but confident~ receiving high fives from the boys and hey buddy’s… G was wrapped in blankets that had been warmed in the truck, and carried to home sweet home… Gently placed dead center in the middle of his own, warm, comfortable awaiting bed he immediately was sound asleep… The boys from the Danville Howard Fire Department had delivered a very brave warrior safe and sound… I cannot thank these young men enough …

I sat on the bed with G and he said… it feels so good… it feels so good… He called for Granny and they had a chat while I prepared the hospital bed for G… I checked on him and he was sound asleep…

as I prepared his IV infusions in the kitchen I heard a horrible thud… G had managed to fall from his bed…..
He was crying and bleeding from his fragile skin hitting the carpet… I have no idea how but I picked him up and got him back on his bed…after 2 hours of trying to calm his trembling, and getting the pain under control, and investigating his possible injury and a call to Michelle I determined he needed to be taken to the ED.. the very same boys who had delivered him safely to his bed at 10 pm were there to deliver him to the waiting hands of Dr McCann and a CT scan…

Dr McCann delivered substantial doses of pain medication to try to get G’s horrible pain under control. His blood pressure was now running very high and his heart rate was too fast and his oxygen levels were starting to suffer… Dr McCann delivered the devastating news and called Dr Costa on his cell…a fractured L1 vertebra… The rush began to obtain a life flight to UPMC but with the weather, no flying today… a flight crew agreed to take G in an ICU mobile unit to the waiting hands of Dr Costa… they briefly ended up at the wrong hospital (UPMC Mercy) where G was expertly taken care of… within an hour he was transferred to Presby… a repeat CT scan confirmed… not a fractured but a shattered L1 vertebra… and emergent MRI to determine if spinal column damage had occurred confirmed that the spinal cord is still in tack with some damage to the column which will be repaired during surgery to repair the L1 – the conversation will happen this morning on exactly how this repair will be done…

G is being cared for in the Surgical Trauma ICU at UPMC Presbyterian which is connected to Montefiore via the bridge… overnight the horrible pain was kept as under control as possible and he remained stable… he is trembling and having difficulty communicating in a meaningful way.. he is thirsty and sweating

This has been one of the worst days of my life… there are no other words to describe the last 48 or so hours… I spoke with Pastor Fennel who made his way on New Years Day to our local ER to pray with us over G… for the first time, we prayed for the Lord to intervene an allow G to float away.. we asked God to give us strength and protect G from further harm…

I am anxious to be with G this morning to hold his hand, and kiss his forehead… tell him no matter what buddy, everything is going to be ok… I love you G…

Today… please pray with us for comfort first and foremost.. for healing as we are aware that the Lord can do anything, for direction for our Neurosurgeon and for Dr Costa who never waivers…that we can find strength to walk through this holding G from harm and pain…

Isaiah 41:10 fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.

We love you G…. we love you~

Godspeed

Monday, December 31, 2012 2:17 PM EST

alot has been happening today.... phone call after phone call after phone call... hospital bed with gel top on the way to the house.... TPN, albumin, unison, iv benedryl, will arrive around 8p or 8:30ish.... the local fire department clearing a path through the snow to the front door and will be there to get G safely in the house...

G is getting a run of Phos.... sooooooooooooo.. around 3:30 ish or 4ish we will hit the road.... G is still not clear that he is going home home... maybe it will be a surprise~

thank you to Jackie at our home health agency, to Cindy at Palitive care, to the guys at the Danville Howard Fire Department for all your hard work and efforts to get G home.... where he can rest, safe and sound....thank you Dr Costa and all our incredible staff here at UPMC for your support, hard work and effort to get G home...

I cannot wait to see him sleeping within our own walls....

pray for safe travels, no nausea, and no issues what so ever as I carry this most precious cargo to home sweet home....

Godpseed

Monday, December 31, 2012 7:19 AM EST

it's those conversations that happen at like 2 in the morning that is the hidden gift of all this madness..... I would never change that part.....

Momma... when they shocked me, something happened to me... yes G... I agree..... my brain has not been working right ever since that happened to me.. yes, I know G... what happened to me? well buddy....I don't know for sure.... but I do agree after that day, your mind has been struggling... but it will get better G... once we get you home, and you have some time to rest, get your sea legs.. it will get better.... in time buddy, it will get better... I am sorry Momma... don't be sorry honey.... it just happened.. it will get better...

then, gone again and has not been back to this room with me since...

the SKY this morning could not be more perfectly beautiful! It is vibrantly red in so many shades.. G spoke up and said... red sky in the morning, sailors take warning... after G's TPN is completed this morning, and after a run of phos, we are heading west... over the three rivers, through the woods to home....allthough G is telling me we are going to Bethel Park to Patty's house~

my prayer for today is safe passage and that G will spend this day of this year and the early morning hours of the new one, sleeping... quietly... sleeping...

Godspeed

Sunday, December 30, 2012 2:18 PM EST

car is packed, G is dressed, ostomy appliance secured (we hope), drug schedule clear in my head

HIT THE BRAKES

we are not able to leave oz today.... we ran in to a delivery issue with our TPN, unison and almumin....soooooooo no escape today..... will happen tomorrow...

I am tracking the snow storm that is to come tomorrow...and talking to Jason....steady as we go....

G, in a moment of him being here, on earth with me said... I am trying to think of what class i can take...before my HTI.... G... you are done with your pre reqs honey.. you are ready for HTI... no I am too confused right now.... then off again to his own aura~~ whereever that is..

we wait....until tomorrow....

Godspeed

Sunday, December 30, 2012 5:19 AM EST

taking G home.... I almost cannot believe the words myself... what is typically thought of as a yahooooooooo kind of day in reality will be one filled with challenges....but still, a yahooooooooooo day!

becuase of all the snow the first issue will be, getting G in the house... once there, things are pretty much set... he will sleep, at least I am praying he sleeps, since last night was another one of G staying awake all night, in his own bed..... he spent the night talking to Michelle, talking to Ashlee, answering the door, talking to Grady, talking to Shelby, looking for things that are on the carpet that are not supposed to be on the carpet, re adjusting his lines, hearing voices, (you get the picture)

sooooooooooooo....I will call on Kevin the snowplow guy supreme and Jason to help get G in the house... G is not aware that he will be going home today despite the fact that we had a long discussion with Dr Costa last night about this .. I asked him what is going to happen today.... he said, talk with Dr Costa? pain mgt meeting? am I having surgery? get out of the TICU? hmmmm....

given that today is Sunday, I anticipate him sleeping in his own bed tonight.... when I can get G to this planet with the rest of us he is very excited about the thought of sleeping in his own bed.... a hospital bed will be arriving...I am just not sure of the timeframe..he just does not stay on this planet much these days...

Michelle will be working hard to get physical therapy established... and because Dr Costa wants out pt 4 times per week... this will be no easy task...G cannot walk, and can barely stand on his own even with the aide of his walker...getting him there.. another challenge...

Ash will continue to care for Chelsea for now... on one hand it would be wonderful for G and Chelsea to be reunited but on the other hand, I am only one person and will not be able to leave G alone to walk Chelsea... Chelsea is in great hands and being well loved. (allthough we miss her so much) She is enjoying her new friendship with Oliver and Charlotte (my grand kitties) Punkin however, will never think having Chelsea in the house is a good thing... Thank you Ashlee and Andy for all your help in caring for our beloved Chelsea and taking so much from my shoulders~

IV meds... TPN is a given - no worries - once delivery is established...I am sure the first trip of the delivery person will be fun... around the lake, back to the woods... oh boy! It will be interesting to see what kind of IV pump arrives (hopefully I have seen it before) We are also running daily albumin to help G avoid third spacing of fluids, unison to help protect him from infection from his numerous open wounds, and we will use a vanco lock to hopefully avoid his line from becoming infected during hours of not being used. We are adding Forteo daily injections to hopefully avoid antother fracture of bone / vertebra.....With any luck, the drug delivery person does not get stuck and uh, does not get lost...

with all the challenges, and I have only touched on a few, it is imperative that G gets home... it is the best chance we have to bring him back, help him find his sea legs, and hopefully give him what he needs to find his way home....

I am excited, but not in denial of what I am attempting to do.... this is a jump, a leap, a gigantic leap of faith, and I am going to need alot of help.... thankfully, Dr Costa is on board with me and this super effort to help G come home... hopefully over the next few days, I am able to put a plan in place to manage the demands, a solid routine and a good plan to be able to get him back and forth to physical therapy.... I am nervous but confident....as Ash would say.. strong like bull...

we have had not word overnight of the condition of Phylis, Andy's Gramma...

keep us in your prayers as we move forward with this very aggressive plan.... we can do this...

Godspeed

Saturday, December 29, 2012 7:56 PM EST

your notes of encouragement and love have lifted me..... how can I thank you, or express to you how it feels to me when you lift me up, stand me up, hold me up when I cannot hold myself...

all sutures have been removed..... and no, not by G... Dr Sogawa took them all out... G is wearing a bandage and a wrap.... NO TAPE (we are trying to protect his fragile skin.. calm has returned to G's aura for now and the night comes with promises to be silent... I will stay with G standing guard....

we are meeting with Dr Costa at 8 pm to dicuss getting G HOME.... what is needed, how fast can we get it, and how soon can we head over the three rivers and through the woods....can we do this in the car?

continue to pray with me as I know you are.... "Do not be conformed to this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect." Romans 12:2

Kirsten made note... she cannot imagine what G is thinking or feeling.... neither can I.... and I am right here witness to this and neither can I....

one way or the other... we are going to get to the place we need to be....

please keep Andy's family in your prayers as his Grama Phylis suffered a stroke.... she is at the Cleveland Clinic and surrounded by those who love her most....

Godspeed

9:30pm wheels are in motion.... G is going home tomorrow.... home to his own bed (well for one night anyway) ~we will need a hosp bed but one night in his own bed.... will be like heaven....
he will ride in the car, not a squad, I will call on Jason to help me get him in the house (we are uh... buried in snow) supplies will be delivered to the house.... tomorrow will prove to be a long, very long, but glorious day...

Lord.... keep us in Your hands.... we are going out on the limb to get G home...Amen

Godspeed

Saturday, December 29, 2012 6:28 AM EST

breaking point.... have you ever reached your breaking point? or at least thought you had? you know.. when you say I am at my breaking point, the end of my rope?

early this morning...... around 4 G reached his breaking point.... he has not been sleeping...staying awake night after night.... sleeping in 10 minute increments..... I share this because I feel it is important... if you ever have a loved one who is seriously ill for a very long time.. I mean long time... someone who must endure the un endurable, tolerate the intolerable, survive the unsurviveable, fight through battles that are un fightable... be as David was when he fought Goliath~ this is important information...

G got his hands on a butter knife and was trying to remove his sutures..... before you have a heart attack as I almost did, he is ok... he did not hurt himself... thank you nurse Heather for your help, insight and understanding... G was NOT trying to hurt himself in any way, let me be perfectly clear... but he does need to come home... HOME HOME.....home where he does not feel threatened, where he can rest, in his own bed, in his own room, in quiet, peace, calm... today, I will do everything in my power to fast foward his home care plan and implemenation of skilled nursing at HOME.... G just needs to be home... pray that I can make this happen and fast.... I talked with him and he said the sutures are too tight, they are hurting me, they are pulling me, everything is burning me... I knew the moment he said burning.. the ostomy seal was breaking...the root of the problem.... the seal was taken down yet again and replaced... finally, quiet calm returned.... G was resting..not sleeping but at rest~

Lord.... impower me, make clear the rocky path that lies ahead.. help me bring G home....to his own room, to his own bed... home...

Godspeed

Friday, December 28, 2012 3:32 PM EST

another flip of the PICC to the IJ and Dr Amesur to the rescue again.... pulled the PICC from the right side, moved to the left side.... hopefully, and it should be, more stable on the left side..

thnxxx so much Dr A.... so appreciate your help.... again, and again, and again, and again...

Godspeed

Friday, December 28, 2012 4:00 AM EST

the move to obtain skilled nursing for Gary at home is under way...

G's mental status is suffering greatly... he is very confused which is causing so many issues.. I have resolved that I will not be able to care for him on my own ~ I am going to need help... I feel like G needs to be in his home enviroment to get control over the multiple issues that we are facing. I feel like it will bring a stable center for him and hopefully will help him find his way back... this will not be a simple task but I am determined to get him there next week. His care is overwhelming, exhausting, frustrating, and a 24 hour constant. G is not sleeping at night, at all, just stays awake unaware of where he is and what is happening around him...he is reaching for things that are not there, he asks about things that do not exist, has conversations with Jason in his own mind, and is unaware of the time of year it is. He cannot stand on his own again as he falls backwards....despite the best efforts he will not leave his incision alone, and is constantly itching his poor, fragile, dry skin around the ostomy. Oh the ostomy.. it is the ostomy from hell... the applicance will not stay on as it cannot adhere to G's pathetic skin... add G itching and there ya go... yesterday alone it was totally changed, reapplied from the ground up 6 times.. every time we have to mess with it we do more damage to the skin...

Pray that the details and approval can be worked through quickly... I am determined to have G home next week, one way or the other...

if I could change only one thing about the journey it would be the pain... both physical and mental... I would take the pain away... noone should be this sick~

Godspeed

Thursday, December 27, 2012 87:15 AM EST

ok..... I realize it is a little before New Years Eve...and setting up goals for the coming year but..... today, I feel like I am totally loosing my patience...(I don't have that much in that dept anyway)

everything is irritating me.... G's continued outer space mental status, constantly having to remind him to LEAVE HIS ARMS ALONE, the ostomy applicance that WILL NOT STAY ON (has been chaned 3 times through the night is and is coming off again as I write)... the IV pump PINGING everytime he moves his arm, the PICC flipping to the IJ, having to wait on the ostomy team, everything being constantly SO HARD... brushing teeth, bathing, sitting, IRRRRRRRRRRRRRRRRRRRRR

Lord.... please, I really need to find some patience...

Godspeed

8:42 am... I just heard the news that our friend Hans earned his angel wings... please pray for his Mom and Dad....that the Lord would wrap them in peace~

Godspeed

Tuesday, December 25, 2012 7:54 PM EST

Silent night, Holy night….oh night of nights…. When Christ was born…

Today was a lovely day with the Christmas tree glowing, Christmas music playing followed by NON STOP Christmas Story on TBS…. awesome… Every year for Christmas our family gathers and we enjoy Breakfast Casserole, some juice, and then opening of gifts together~ of course, this year, G and me are not home so it appeared that our family tradition would not be this year… a few days ago when I shared our plans for Christmas in Oz away from those that we love the most, Ashlee told me she was going to have Christmas breakfast delivered! Well, I did wonder how she was pulling that off on Christmas day… hmmmm… but since she had told me she was having a little gathering at her home this morning… I was not at all suspicious.. she said to be sure to be at the hospital by 8 or 8:30 to meet the delivery guy~~

G and me were so happy to have Michael join us in Oz for Christmas! So Michael and I were getting hungry about 8:30 and I were thinking.. where is BREAKFAST?…. So Ash calls me….. Mom… the delivery is at the hosp ~ they called my cell by mistake… so run down to 7 and meet them… ok… will run down, will call you right back…. Soooooooo off Michael and I went leaving G to his nap jumping in the elevator ~ off the elevator and to my GREAT SURPRISE there was Ashlee holding a BIG sign MERRY CHRISTMAS!! and Andy and they brought breakfast… Christmas Casserole…juice…. Just like home….

The five of us enjoyed breakfast, well, not G but… watched Christmas Story, laughed and ate too much….. Michael brought the most awesome ham in the crock and Karen’s Christmas Bread (breakfast for tomorrow) we had Christmas cookies, brownies, and G ordered milk from room service.. milk for all! We opened gifts and shared laughs… G slept for the most part…. It’s all good…

Thank you Michael… so much for spending this day with us…..Ash, Andy… I cannot thank you enough…. Mich, thank you for hanging with Granny…. Merry Christmas to all and to all a good night~~

Godspeed

Sunday, December 23, 2012 6:17 AM EST

I am HAPPY, THRILLED out of my mind, almost jumping for joy, maybe dancing in the street to share that the ostomoy appliance has stayed on ALL NIGHT!!!!!!!!!!!!! yipppppppppppeeeeeeeeeeeeeeeeeeeeeeeeeeeee

G continues to make slow progress.... pain is a challange, but I feel like we are doing a good job of controlling it... back surgery, well, pretty much stinks..... maybe would not be such a challange if we did not have so many other issues going on... but....... one step at a time~

Linda the angel ornament you sent looks BEAUTIFUL front and center on the Christmas tree.... thank you so much!

Godspeed

Saturday, December 22, 2012 7:09 AM EST

G continues to make slow progess..... steady as we go....

today, Christmas will arrive in oz making things a bit more festive as we await the arrival of Santa and the celebration of the birth of Jesus our Lord and Saviour in a Christmas Eve service at the hospital...

Godspeed

Friday, December 21, 2012 9:30 AM EST

at this moment, we stop everything we are doing, everything we are thinking, and pause........... thanking God for His healing love, His mercy, His compassion as we reflect on the children, the teachers, the staff who now reside in Heaven.... our hearts, our minds, are focused on a small school in Newtown and all who are there today, suffering such loss... may thier hearts be comforted...may our country come together, may this tragic, senseless event be the mode of great changes....

Godspeed

Friday, December 21, 2012 3:37 AM EST

so far, so good.... pain is a bit of an issue but seems to be able to be controled; not gone, but not making G squirm all over the bed...

sadly, the PICC has flipped yet again in to the IJ so TPN had to be stopped... the only thing that we can do is enough fluid to maintain the dilaudid pump... in the morning VAS IR will need to repair the line, again
the issue with the line is that it cannot be put in far enough to keep it from flipping becuase the tip causes G to suffer A Vib which leads to heart conversions... not a good thing....

g's skin is suffering some bleeding... we will address this again tomorrow as well.... youy....

let the rest of the night be quiet.....let the PICC be corrected without issues...

Godspeed

Thursday, December 20, 2012 2:00 PM CST

off to the OR to get this back fixed....

updates to come

Godpseed

Surg completed... they tell me things went well... G will be in recovery for a couple of hours

Godspeed

Thursday, December 20, 2012 10:48 AM EST

surgery will be today between 1:30 and 3:00 - one thing is for sure, they cannot start without G.... he is the third surg on the schedule today...

apartment update~ looking again... turns out, the one I leased was already leased and my rep was unaware of this... yesh....

Godspeed

Wednesday, December 19, 2012 7:22 PM EST

what a day it has been.... I think I may have gained 15 years today.... at the hosp at 6:30 for blood work, and antibiotic infusions (3 of them now if you are counting)

G's blood work looks AWESOME by the way... and so far, nothing is growing from the bacteria samples... thank you Lord...

then a trip across the bridge to PUH to see the neuro surgeon and consult with our team.... it was decided that surgery will be done tomorrow.... the pain is almost unbearable so we are drastically increasing the dilaudid. hopefully tomorrow this problem is fixed and hopefully pain relief comes quick...

upon arrival back to MUH G's osteomy applicance decided to break.... if you are not familiar, this is an emergency! the stuff that drains is like ACID on the skin so it must be replaced immediatly... DID I BRING SUPPLIES with me?? OF COURSE NOT!! so... nurse Kailey chased some down, repairs made.. all is well...

it is now 20 mins before 8 pm and we are still here, waiting for MRI of the spine.... we need this for surg tomorrow.. has to get done.... someone is going to do yet tonight.. by the time my little eyes hit the pillow, I will for sure be wiped out... and tomorrow, busy, hectic day...

so I did lease an apt today in my free time in between running across the bridge, and working.... will get the keys on Friday.. will check out of hotel Fri am and move to apt.... Ash will be heading this way to help me do some heavy lifting of sorts to get the basics in place over the weekend.....

will make a run for the border to winter up the house and pick up Mom.... hopefully, weather is in a happy mood over these very busy, hectic, next few days....

Godspeed

Tuesday, December 18, 2012 8:10 PM EST

may have found an apt just 15 mins from the hospital... 1/2 the cost of the hotel and has everything we need to ensure that G has the care he needs as he fights his way back and endures the upcoming back surgery.... no steps, dishwasher, grocery close, quiet, and safe...

pray that I make the right moves... cannot afford a mistake on SO many levels... May the Lord have His hands firmly on the wheel...

Pain continues to be a struggle... we are doing everything we can to help.... PLEASE Lord.... let this fix be Thursday...

Godspeed

Tuesday, December 18, 2012 11:21 AM EST

G's blood work today looks so much better.... HH up, White count down, INR down, platelets up (the best number we have seen in MONTHS!)

we are now using 3 antibiotics.... Vanco (very allergic to this one) Flagyl, and a broad spectrum.... more adjustments made today to try to manage the back pain.. upped the fentynal patch to 50 today, morphine 1 mg now every 4 hours, and dilaudid 4 mg every four hours...we are also using a lidacane patch over the exact area where the injury to the back (spine) is....

tomorrow, a visit with Dr Gerszten, Dr Costa, and another doc who is a foremost expert on MRI will all confer, and make decesions...God help us..

Godspeed

Monday, December 17, 2012 10:36 PM EST

today was a long day on 7 west...

the morning started out with blood work leading to the discovery that the PICC was no longer working... due to some low grade temps during the night, combined with the PICC not allowing us to pull blood, it was decided that it would be rethreaded...

the PICC was rethreaded - done without indident but still bleeding tonight... discussion for tomorrow.... G's arms started spontaneously bleeding tonight - wrapped them with non stick bandages - another discussion for tomorrow...

a CT of the back was done due to G's sudden complaint of severe back pain following a hard sit yesterday.... uggggggggggg confirmed, the L4 vertebra is fractured... there may be more - an MRI probably on Wednesday will provide the details we need~ we hopped over the bridge to immediatly consult with Peter Gerszten who is the neuro surgeon that Dr Costa wants to work with on this issue... most likely on Thursday G will undergo Kyphoplasty surgery to repair this damage...

we are trying to manage the pain caused by this injury but this is proviing to be quite a task...

the hunt is on for a small apt in Pgh that we could lease for the next few months... if you read this and know of someone who needs to sublet, or, is leaving thier home for the winter, or, or, or, please email me.. we are hoping to find something for January 1

Godspeed

Sunday, December 16, 2012 8:40 AM EST

in the aftermath of the umthinkable events of the past few days in CT, our family continues to pray for peace...there is no and never will be any understanding.... I feel like Mike Huckabee stated it best.... from John 11:35 Jesus wept~ Jesus feels so much compassion for those who suffer...

last night was a bit better for G... he awoke 4 or 5 times needing assitance... the nausea was kept at bay through the night thankfully.....

the thought was to take him for blood work this morning however a quick conference with Costa and a decesion to hold until tomorrow unless he continues to experience difficutly breathing today ....

the sun will be shining for a time this morning..... get outside, enjoy

Godspeed

Saturday, December 15, 2012 8:30 AMEST

today we are living in the day after some of the horrific news any of us have ever heard... there is no understanding, and nothing about the tragic events of yesterday in a small town in CT, at school, where children are believed to be safe.... the prayers of our family are with the families of Newtown, CT....

G is resting at the hotel...... his care is quite complex.... pray for me that I have wisdom and strength...

Godspeed

Thursday, December 13, 2012 1:45 AMEST

to solve a problem, and all problems are solvable, it just takes the right people with the right mindset, and the will to do it... sometimes it means taking the extra step, staying a little longer, thinking outside of the box, and just doing it...it takes a mindset, and a decesion to just get it done...

tonight G's TPN runs providing for his much needed nutrition becuase Dr Amesur and his team stayed over, took the extra time and fixed a PICC that was unusable.... G cannot eat....his body depends on that line to provide everything he needs as he fights his way back....and fighting he is.... because 3 people went the extra mile, G is able to get his antibiotics, and nutrition that he needs...

for the record, today, no nausea..... don't say it too loud.... but I just had to share.... for this we are so thankful... thank you Lord for your mercy...

Godspeed

Wednesday, December 12, 2012 3:45 PM EST

sooooooooo... the PICC has backflipped YET AGAIN
irrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr

waiting to have it fixed so we can run G's TPN....

irrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr

Godspeed

Wednesday, December 12, 2012 7:41 AM EST

yesterday ended with a fall.... we think everything is ok but getting shoulder XR's and a belly CT this morning... yesh

this morning is starting with some incisional bleeding.... hmmmm.... hopefully just a tear... it is not pouring, just steadily bleeding... can hardly wait.... hopefully, a simple solution..

otherwise, G is feeling ok today... nausea under control... we are on the hunt for orange sherbert... the breakfeast of warriors...

Godspeed

Tuesday, December 11, 2012 4:56 PM EST

thank you Sherry.. so much...for reminding me of this verse... I have just read this to G... thank you so much

Isaiah 41:13 says, "For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you."

today, we worked on pain some more and staying on top of the nausea.... G WALKED two times, 30 feet each, pushing his wheel chair... he said, hey, this thing might not be to bad after all.. when I get tired Momma, I can just take a seat... and if I need to, get a ride back.....

as a reward for his hard work I rode him in his chair to see the Christmas trees..... what a beautiful site...

G's mind is getting more clear...today he was having converstaions that actually made sense and appropriate responses... this morning the first thing out of his mouth was... MOMMA... it is almost Christmas... it has been on TV.... how am I going to go Christmas shopping? We did not spend our conversations talking about things that don't exist, about Chelsea hiding in the picture hanging on the wall, or other subjects that have been... well, out there....

I was so shocked that he knew or acknowledged it is Decemeber I almost could not respond....

tomorrow, another adjustment to pain meds.... please nausea... please, stay under control..

Godspeed

Tuesday, December 11, 2012 5:39 AM EST

When I am afraid, I will trust in you. In God, whose word I praise, in God I trust; I will not be afraid.
Psalm 56:3-4

I was thinking during the night of fears.... some of us are afraid of the dark, some are afraid of bridges, others tunnels, dogs, horses... many things... a fear of G has always been having to have an ileo, another, having to depend on a wheel chair... now we have both....G's mind, I feel, is starting to come back to the surface...

last night we talked about the ileo... the wheel chair... school, going home... we talked about Christmas, Grady and Shelby, the lake where we live, fishing, and Kevin...we talked about Michael and we we talked about Karen...we talked about Angie and we talked about movng forward from where we are.... I told G the journey is going to be long and I will never lie, it is not going to be easy.... I just want to go home Momma... I just want to go home... keep working buddy.... we will get there...

the night has been ok for G.... he only needed phenegran for the nausea once and has not had the po dilaudid most of the night... he did have morphine~ small steps, right direction...today the goal is to use the wheel chair as a walker... G can push along, and then, have an instant seat if he grows tired and needs a ride back...

as we were talking I knew that we were talking about fears and facing them... dealing with life on new terms... with courage and faith, we will move forward.... one little step at a time...

Godspeed

Monday, December 10, 2012 8:52 PM EST

sometimes it is the small things....maybe most of the time...

G had a long day of doing battle with nausea, and pain... our morphine experiement did not pan out so well... morphine is awesome for breakthrough~ it works fast, it just don't stay long....determined to keep G off the pain pump of dilaudid, we changed G to po dilaudid q4 and left the morphine in place q4 for taking the edge off... already by this evening, G was doing better...

we had dinner together! I had chicken...G had ice chips... Deb (his awesome day nurse) helped get him on top of the nausea and this evening, I tossed him in the shower... I washed his hair and then just let the water pour over him...

oh Momma... the water just feels so, so good.... thank you so much for helping me make it to the shower...... the little things... a shower....

all tucked in for the night we are praying for quiet to prevail.....G has been dreaming of Chelsea... he is missing her.... I see that as a good thing.... to get to Chels G you need to continue to work hard... fight past the pain, through the nausea... we are all helping you buddy... just keep fighting... you can do this buddy.... you can do this...

keep David in your prayers... he is doing battle in the TICU...

Godspeed

Sunday, December 9, 2012 7:20 PM EST

nausea.... I am so SICK of nausea... g has been doing battle with nausea all day..... bless his heart...

we are attempting to transition him from dilaudid to morphine.... tomorrow should give us a pretty good idea of how this is going.....

the ileo looks the best today as it has looked since it was created..... steady as we go...

Grady and Shelby are both suffering with ear infection / sinus infection.... bless them and thier Momma...

Godspeed

Friday, December 7, 2012 8:37 PM EST

a new PICC was placed today, rethreading through the same site... it is a new type of PICC~ I need to do some homework... thank you Dr Amesur for always being there to take such good care of G.... we so appreciate you...

IVIG was given today and so far, so good.... we will now be watching ever so close for rejection.... the dose was small to try to boost G's immune system just a bit as it had dropped pretty low...

hopefully, a quiet weekend ahead..... no drama, no, well, no nothings...

sleep well .... hugs hope and love

Godspeed

Thursday, December 6, 2012 12:37 AM EST

G is looking better today.. more alert, still very sleepy but better than the last couple of days..

he is getting blood today and will get an infusion of IVIG as well... his immune system is so low that it needs some help so that it has the ability to fight infection. G will have a small, low dose as we do not want to boost his immune system too much and put him in rejection..

fine line.....

it is possible that the PICC has done a back flip.. we hope not but G is feeling fluid in his neck... so... a chest XR will give us the answer..... hopefully we are ok, but....

Godspeed

Wednesday, December 5, 2012 7:43 PM EST

a mere 24 hours after such great concern filled this space, we are all starting to feel better... including G

the antibiotics appear to be working... when Costa arrived this evening, G, Michael and me were talking football (I am not 100% sure if G actually had any idea of what he was talking about but..) I could see the relief wash across Costa's face..... he joined in the foot ball conversation adding, that we ALWAYS cheer for Michigan...

G was scoped today and it was very exciting to see the inside of our precious little intestine.....I have not seen it in quite sometime! There was no obvious appearance of rejection, it was not PERFECT but it does not need to be perfect... it just needs to be ok...the ileo is starting to look better.. the gaping hole is starting to fill in... this tissue is so tender requiring the utmost of care.... as Costa said, like caring for a new born babies skin... very careful...

we continue the antibiotics, and hopefully tomorrow we are back on track getting G back on his feet..... his arms are healing well ... we still have some breakthrough bleeding but it has not been of the uncontrolable type...

we are working on getting along without oxygen tonight... steady as we go....

tonight I sit here with my buddy while he gets his infusions over the next few hours... so many thoughts roll across my mind... how blessed we are to have such incredible people around us... not just your average, nice, wonderful person.. I mean, truly, incredible... Michael... we love you so much...G will be safe and sound, warm and protected, cradled in hope, kept in joy, graced with peace and wrapped in love by his new shaw from Corpus Christi Catholic Church~ Costa... sleep well our dear friend... our prayer warriors.... keep on praying~~ we are getting there...we love you so much....Sherry, Mama Sherry... G's sends his love..

We are blessed most richly by so many wonderful, friends.... here in Oz, in Ohio, Georgia, California, Tennesse, Texas, Iowa, North Carolina, South Carolina, Michigan, Virginia, New York, all across this land... Denise, Patty... you are always there... working hard to support G and me as we travel on.. Kim, a tower of support.. how can I thank you... our nurses from 11 and here on 12... they are not just our nurses, they are our friends...our ostomey team... so great to work with us on this not so easy ostomy~ and Gramma.... Granny has always been such a support... from the moment G was born until this very day... she always says, whatever it takes, what do we need to do Lin? ~whatever it takes... we love you Granny... sleep tight~

pray for all the warriors here..... they are all fighting so very hard.... pray for those who warriors have claimed thier place beside the Lord... we never forget...

sweet dreams all... may this night be quiet and filled with peace..

Godspeed

Tuesday, December 4, 2012 5:15 PM EST

the weather this morning was mild, warm actually, it felt like spring... a fooler...a teaser....it is raining now, and cold.... the darkness of the evening seemed to fall early.....

G asipirated today, or well more acuratly, probably during the night... his right lung now has an infection. He has been plagued by severe nausea all day... from the OR, Dr Costa ordered a stat CT of the lungs, abdomin, and pelvis... our fear was an ileus.. thankfully, this is not the case... G has been sleepy, well, not present all day.... we are going to be very aggressive in going after this lung infection....and hopefully, we win.....

G had such a good day yesterday..... a fooler, a teaser, to perhaps make us let our gaurd down.... that won't happen again... the darkness fell early for G today... we are starting Vanco and Zosin, IV bolus to get his kidney function back up, and keeping his nausea treatments to every 4 hours...

thank you nurse Kathy for all your amazing care today...continue to pray for Costa and company... there are 12 pts on 12, 2 or 3 on 11 and heavens only knows about the TICU... our friend David went back to the TICU today... we saw his Dad when we were scootin to CT which is just around the corner from TICU.... none of them simple, none of them easy...

Godspeed

10:45 p and then there were 5.... antibiotics that is... with the entrance of a low grade temp (very unusual for G- his temp normally drops when he is sick) a quick call to Costa added more antibiotics, blood cultures, and early morning change out of the PICC (i can hardly wait for that), an endo and something else that I cannot recall at this moment...

hmmmm... th rain is falling outside... pouring actually... pouring..

Godspeed

Monday, December 3, 2012 4:58 PM EST

we are on countdown #2... possibly Friday~~ one day at at time..

G needed some blood today but other than that his blood work was not too shabby today.... tomorrow one more cut to the IV pain meds.. easy does it... the appliance from yesterday is still holding today... SHHHHHHHHHH don't say it too loud! hopefully we can make it through one more day.. Costa is considering the convex appliance... has to think about it....

G walked today about 20 feet with phys therapy... NICE WORK G!! This afternoon we took his new wheel chair for the first spin... G was having a hard time keeping his eyes open, so it was short but we did it...he said it feels pretty good

G and me want to wish Ashley (transplant) a very HAPPY BIRTHDAY!!!

hopefully, a quiet night.....

Godspeed

Sunday, December 2, 2012 12:00 AM EST

sooooooooooo..... we will not leave oz today..... we are having a bit of an argument with our little ostomy.... Dr Costa worked on it at 7 am... and I was able to chase down a true convex appliance (as found on the internet) and the nurse (sorry missy) was not to happy with me that I would not let her take the dressing down and put the new applicance on... but.... everytime we take the appliance down, it tears the skin... and, I need to clear this convex applicance with Costa... we do not want to put TOOOOOO much pressure on that little intestine~~ careful as we go.......(first do not harm)

so we will see what tomorrow looks like.... G has been marking the days off on the wall... sooooooooo we just added another day (we are flexible) G's white count dropped a little bit but again, we will see how we look tomorrow...

for today, steady as we go.... OHHHHHHHH I did wash G's hair this morning! It was not easy and I probably should not share the details but I can say the cleaning lady was a bit miffed at me... but eh, the floor needed a wash anyway ~ it is amazing what one can do with a trash bag or two and a garbage can... it's all good and G got a nice hair scrub which I am sure felt so amazing... it was worth all those little drips..... it's all good...

we continue to experiment with pain meds... trying to transition off of IV over to oral .... not an easy task... steady as we go...

Godspeed

Saturday, December 1, 2012 65:43 AM EST

Hebrews 12:1
Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us

It occured to me, which it has before so many times, that now, as always, I have always believed that all things happen for a reason.... there are no accidents, only on purposes.... you never know the impact that your situation may have on others, that you may not even know... hopefully, prayfully, through G's life, the blessings continue to reach out to show, God's amazing grace and power even in the worst of moments...

Yesterday, G was successfully weaned from his heart medication....His strong and again healthy heart beats on it's own, keeping perfect rhythm without the assistance of any drugs....he is also now free of all antibiotics, and anti-fungals.... His ostomy has been behaving since his last bedside surgery under our ever OH SO careful care and never stopping attention…

Yesterday when Dr Costa entered the room, G greeted him with HEY BUD, what’s going on? An immediate phone call from an elated surgeon filled my heart with joy~ G is coming back Lin, G is coming back… We are winning this battle.. G is coming back…

Following all of the weeks, months of nothing but rough news and tough to handle situations, yesterday was a day of joy and thanksgiving for the miracles of small steps which came to me over the phone as I continue to make preperations for G to come back home~

We are fully prepared to head to Cleveland thank you so Ashlee and Andy for preparing to accommodate G and make him comfortable in your home… Cleveland… Let me say a couple of things…

It is for my own Momma's heart that I need Kareem to see G… enuf said…

Dr Costa… Let me be clear that I am perfectly aware that today, this afternoon, tomorrow, everything can simply head south… things in G’s world, true for all transplant survivors, change so quickly that a human mind does not have time to “get it” but only time to react and roll with whatever presents itself… over the past many months, G has for the first time, been in the direct care of Dr Costa. This has been an incredible journey with it’s own life… We always dealt one on one with Kareem (bless him) with Costa always being there, involved, active in G’s care, but never the one calling all the shots… I admit it, I was concerned… I knew Costa was competent, talented, unrelenting, determined, capable, extremely knowledgeable, and trained by the master… but… In our world, change does not come easy…

Dr Costa has been and continues to be, well, I am left without words… there simply is no description… he is determined to help G fight through what is proving to be one of the most difficult and challenging battles of his entire life…that is saying a lot… G has experienced, well…the unthinkable, unimagineable

Again, there are not words enough nor time… We thank God for laying G in the hands of Dr Costa… We pray for him each and every day as he holds so many in his care and like his mentor, he will not rest wanting and expecting only the best for these incredible warriors who fight so hard… we are so deeply humbled at this dedication…

Your continuing prayers are needed and deeply appreciated.. we are counting on your voice… our situation is very fluid… changing from morning to afternoon, from afternoon to evening, through the night and back to the morning... stay with us, hang on, and never ever give up hope…

We love you so much G and we are so very, very proud of you… your spirit, your determination are indescribable~
Keep fighting buddy and run with endurance the race that is set before you

~ we are right here with you…

Godspeed

Thursday, November 29, 2012 6:24 PM EST

the day has been relatively quiet for the most part for G~ (thank you Lord)his white count fell today so he did need Neupogen to kick it back up ... there has been a flurry of activity as many people are working very hard to try to get G home... I feel compelled to say, this does not mean that G is well, back on his feet, and solid.... the reality of where we are could not possibly be further from that... but.... I made this warrior a promise.... that being said, we are NOT giving up, we are NOT giving in.... Gary's incredible life, HIS journey, forever has been about hope... since the moment he was born through this very day.... HOPE.... and beleiving with all your heart....

I have had the refresher course on blood draws, insulin administration, TPN administration, IV pumps, CPR, wound care, IV medication administration, testing and preserving samples from the ostomy, and uh, is there anything else??? The wheel chair will arrive tomorrow, the walker arrives on saturday....home nursing is coming together, an aide is being searched for..... WITH all of this said.... we will not take G out of the hospital if he (uh, that does not carry too much weight right now) or more importantly, Costa feel he is not ready.... FIRST DO NO HARM.... We are preparing for Sunday.....but..... this remains to be seen... G set this goal himself and we are doing everything we can to make it happen...

Ash and Andy are moving furniture so that G can have a bedroom on the first floor of their home anticipating our arrival to Cleveland. Kareem has been put on alert that pending release we are coming... NO we do not think he has a magic pill or can do something that Costa has not done here, but... I NEED to know, that his eyes have seen G face to face... I HAVE TO know and Costa agrees it is a good idea...

G is very confused and we are dealing with alot of pain and intermitant battles with nausea~ but today, G's eyes are blue, even the whites are blue~ so beautiful

... we have tried today using a diffent bag for the ostomy which is hopefully relieving any pulling of the tissue ... this tissue is so very fragile we cannot risk any chance of it being pulled or stressed in any way....

the list is long, there are so many great people working very hard to make this happen for G...... all hands on deck is the motto..... some think we are brave, some probably think we are crazy and who knows, maybe we are (they have not been brave enough to say it, but all, no matter what their opinion, understand what we are working so hard to do and why we are doing it)

it occured to me this morning, early before the sunrise... the very monster that sent us here to begin with in 2004, pseudo obstruction (among other things at that time) has somehow found it's way back to G...... how is this possible? Perhaps we will never know... but one thing is for certain.... we will never stop fighting~ not just for G... but for that Mom who got this horrible diagnosis today for her child, her baby and for the kiddos who will recieve this diagnosis in time to come and face the same battles as G, as Angie, as Karis, as so many others........

I cannot thank you all enough...... for staying with us, for praying with us, for us, for loving us through the long dark nights, and for holding us up when it is impossible to hold ourselves.... I could not do this without you.... your messages, your notes, emails, and support... I am humbled beyond what my words can express.....we still need you...we stil need you...noone, anywhere, ever, should be this sick....Every day we thank God and pray for Costa.. he is simply incredible....

Through God's unrelenting grace and mercy in our lives, through the love and unending prayers of so many across the country, and through G's incredible will, determination, hard work and fight, Garys amazing journey continues....

please continue to pray for Jolinda, Kirsten, and Dad as tomorrow they celebrate the precious life of thier Michael.. we love you all so much...

Psalm 31:24 Be strong, and let your heart take courage, All you who hope in the LORD.

Godspeed

Wednesday, November 28, 2012 5:07 PM EST

Our little intestine continues to try to flex its muscle…. This morning around 10:30 or so it decided to take an exit…

Fortunately, when this occurred a small little leak appeared on the sheet… of course in the case of an ostomy leak small leads to HUGE in a matter of moments…
I encased the site with towels and summonsed our nurse to call the ostomy nurse~ (and added, please tell her not 3 hours from now) She appeared and I told her Dr Costa will want to see the ostomy without the appliance on so please call him… Which she did… with great anticipation, everyone was watching as the appliance was completely removed …

Costa said… hmmm… I will need to repair this…
I can take him to the OR or I can do it right here at the bedside… WHAT??????????????? I can do this here if you help and the nurse helps… I can be sure he will not have pain……we can avoid all of the drama of the OR…if you agree…

OK then… lets do it… nurse Stef gathered the items on the shopping list from Costa, he went to the OR to gather up the items he needed… a big bright overhead light arrived and the beside process began…

G was so sleepy, (his new normal) for which I was thankful Everything was carefully prepared, the sterile field created, G cleaned and draped, and the cleaning of the newly created wound began… Carefully the area was anaesthetized and the repair work began… G remained calm and quiet the entire time~ it took about an hour… I held his hands and kept him from contaminating the sterile field… Nurse Stef (her first time for a bedside surgery) did just great following instructions to the letter…
Costa, ever so calm, careful, talking to G the entire time… easy Costa, don’t hurt me, easy Costa… successfully closed our newly created tear… hopefully this repair is the last… however, Costa acknowledged, we will keep watch… Keep a close eye on this site…

We are continuing to work on the goal of getting G home… Supplies are arriving; nurses are being arranged for home care (thank you so much), monitoring equipment being organized and obtained, a walker, a wheel chair and necessary approvals continue to be requested and obtained one by one… it is not a simple process…(keep checkbook handy)

For now, we are keeping a close eye to the ostomy which since this morning’s surgical repair has not given us anything… no air, no liquid, nothing… Sit tight…
Stay calm, and wait…

Godspeed

Wednesday, November 28, 2012 5:46 AM EST

OH MY GOODNESS...... you all are so cracking me up! Thank you for letting me just YELL.... I love the Goodwill idea, and Nancy.. please keep those dishes handy (I will bring the wine for the after party), Michael.... don't fix that hole (well until you go to sell your house someday-people will wonder) and Sue the tan bandage idea, YOU will NOT believe this but that is exactly what I did last NIGHT-wrapping with the same process that we use to wrap horses legs. (I will take a picture becuase at this moment the arms (both of them) are still safely bandaged as is the belly!!!

some much needed sleep did me good... I feel SO much better today....and G has left his bandages on over night to this point... Thank you LORD for this... a small amount of blood loss is critical for G and the risk of infection.... I won't even go there... G's sutures (and there are alot of them as Michael can attest) will stay in until at least February or March becuse the incision is not healing the way one would expect (thank you steroids). I am so thankful that our confused little mind has rested over night and thank you to the nurses who made a pact to have all hands on deck overnight and be sure that SOMEONE, anyone, poked a head in at least once an hour to be sure G was not playing surgeon and attempting to remove sutures.....

yesterday, with two assistants, G walked 14 feet with a break at 7 for a rest... WE are SO PROUD of G's efforts! His blood levels were nice for the most part and DAY 1 of no added mag, potassium, lasix was achieved.... thank you Lord for your mercy on us....

Pray that TPN is approved and that the complex work that is on full force all comes together so we can get G released... we must jump through the hoops, over the hurdles for approval of the necessary support G needs in PA and then we will start working on the same process all over again to head to Ohio... (would it not make sense that one aproval would cover two states? and everyone wonders why medical costs are OUT OF control) another conversation for another day~~

for today, my heart is just so thrilled to know that our TAN bandages are still on, still in tact....

thank you for hugging me through my yelling

please continue to pray for Michael's family...

Godspeed

Tuesday, November 27, 2012 12:54 AM EST

ok.... so everyone tells me how PATIENT I am... which seems very odd to me since I am not PATIENT at all.... and today is one of those days that I need to get in the car, head south and not stop until I am so far from here that I cannot even remember where Pgh is.... YES, I do have those days and THIS IS ONE OF THEM

lets start the day out.... G's state of mental confusion is quickly becoming exhausting to deal with... he will not leaave his bandages on, this early am was pulling at the sutures, had his arms bleeding YET AGAIN and to top it off the ostomy started leaking....

of course there were no supplies to repair it readily availbale... soooooooooo... the entire bed needed changed... had G up in the chair, bathed, teeth brushed, and he is constantly "untangling his lines" which of course results in a massive tangled mess.... phys therapy arrived to take him for a walk to the door and back only to discover the ostomoy leaking AGAIN..... ok, cancel the walk.... repaired again... back in bed...

the docs arrived to round, how are things??? BETTER IF YOU DO NOT ASK TODAY..... sooooooooooooooooooo

they leave, sherbert for breakfeast done.... and guess what.... the OSTOMY IS LEAKING AGAIN~~ I asked that the wound team come... that only took 3 1/2 hours... so... bed change AGAIN, site cleaned.... we need to have Costa take a look at this... there is yet another SMALL opening which I personally am NOT DEALING WITH TODAY.... photo taken, sent to Costa... appiance replaced and lunch arrives.. more sherbert and milk....

what time to they serve afternoon martini's??????????????

arrive, home TPN teacher.... REALLY????????????? yes I am familiar with the pump... yes I know how to change the dressing.....no I have no idea how long we will be in Pgh .... where are we headed next??? CLEVELAND if we ever get away from here....

the rest of this day better just be quiet..there are days wehn I just want to HIT SOMEONE, anyone, SOMETHING, anything ~ I just think it will be such a release and feel so GREAT... maybe one of those places you go and pay 5.00 to break dishes or something... that would probably be a great business to have here in Oz....

as G is sleeping for the moment, shaking his head no.... I wonder.... where are we going?

typcially, I do not vent, yell, scream or well.. whatever... I deeply appreciate being able to YELL JUST FOR ONE DAY....

tomorrow will be a better day (or I am going to hit someone)

Godspeed

Monday, November 26, 2012 8:45 AM EST

ammonia.... what a funny thing...

this morning G was awake enough to declare to Dr Sogawa (sorry Costa, he does not recall your early morning visit) that it is nice running in to him in the hall! (UH....g is in bed but hey..... technicalites right?) Sogawa went with it.. it is nice to run in to you too! G said so I am pretty sure I will be leaving on Sunday so if you need me to do anything for you, you will need to let me know... OK... sounds good!

Momma..... are we on the second floor? No buddy, we are on the 12th floor...... OH I thought we were on the 2nd floor of this hotel... what is it called again? AND.... once we get home what are we doing about Thanksgiving Dinner? Is everyone coming to our house or what? Oh and I think for a while I need to move my bedroom off of the top floor~ the stairs is going to be a little too much for now...

WOWZA, we have some catching up to do..... G will be quite surprised to discover we don't live in that house any more (moved end of March) and uh... Thanksgiving? uh... Christmas is on the way... Oh well.. not a problem...

G sat in the chair yesterday and ate some ice cream without any issues..... we are HOPEFUL that his diet can consist of clear liquids, milk, ice cream, pudding, yogurt.... TPN will provide his actual nutrition...

we are praying that this week is simply, quiet.... that we can keep getting him to the chair, and walk with a walker at least to the door..... the goal for the week is NO DRAMA.....

time will tell....... we are confident....

Godspeed

Sunday, November 25, 2012 5:46 AM EST

a quieter night has prevailed... no bleeding, pain back under control, a potassium overload is being addressed as I type....We are so thankful for the mercy of the Lord and Dr Costa's constant command.... prayerfully, today will be a day of rest.. of quiet calm... I am anxious to see what the platelet count is this morning after our efforts of yesterday~

A bit after 10p Jolinda, Kristen and Dad were witness as their precious Michael earned his angel wings….Dr Marsh who had performed his transplant 10 years ago came to be with them, standing beside them as a friend as Michael began his heavenly journey in peace, surrounded by love…. Jolinda, Kirsten, Dad…. Our hearts are aching today and we pray for Peace, Comfort, and that your minds be flooded with the joyful moments of the life of your sweet Michael…..Please keep this kind and loving family in your prayers as they endure the painful days ahead

Godspeed

Saturday, November 24, 2012 7:46 PM EST

the first snow of the season came today....white fluff covered the ground perhaps, creating a soft place to land~ if only in our mind

G had a very difficult day today following what was a restful night followed by some early before sunrise tv watching.....

I called to check on G at 2 and again at 5:30... Costa was in between 6 and 6:30 a... G made some jokes with him allthough not entirely awake... I arrived at 8 am and recieved the warning from his nurse Deb, before you go in, there is a mess in there.... oh boy... what happened? (I was thinking the ileo bag broke(?)

there is blood everywhere... oh good.... I grabbed a pair of gloves on the way in.... Jaime, Jamey and Debra were working to clean G up, wrap his arms and hands, his shoulders and legs and dab the incision... upable to clean him up becuase of still active bleeding, we wrapped him in purple pads, covered with a sheet, which immediatly had to be replaced, and with yet an other replacement we headed off for a stat CT of the chest, abdomin, pelvis.. Costa was with us and was in the CT scan...

the CT thankfully was clear.... no clots, no leaks, no active bleeding, no hematoma... with a bed reserved in TICU, we decided to head back to 12 N to give cyro, a six pack, frozen platelets ... upon giving the cyro the bleeding stopped (that stuff is amazing! and yes, a blood product) we got G cleaned up, in a clean bed and worked to get the tortureous pain under control....this took some time, but mission acomplished....

the opinion is that the liver numbers are not quite what we need them to be and the blood is being thinned out and started leaking through the surface of the shoulders, arms, legs, fingernails, lips, chest and incision.....

G is just finishing up geting a unit of blood and is quiet.... we have 3 more units on hold for him, and a TICU bed on hold... hopefully we can get through this first night of snow, without leaving the floor...

the family of Michael, tonight is making some very difficult decesions.... please keep them in your prayers for peace and comfort beyond our human understanding... bless his very special heart..... the pain we must endure in oz... well, I hardly have the words...

Ash... thank you so much for running to Mich rescue and helping so much... I love you both so, so much...we all have to stick together....Michael.. I cannot begin to express my thanks for your making your self available an on standby this weekend.... simply said... it takes a village...we love you

Thank you so much Patty, Denise for coming to sit.... wait and just sit.... I love you both so much...

praying for a quiet night of peace, comfort, no pain, no bleeding.... just calm....... calm...

Jolinda.. Kirsten... Dad... we love you... may peace surround you...

Godspeed

Friday, November 23, 2012 10:44 AM EST

this morning the JP (drain) was pulled from the abdomin and the foley pulled - thankfully, G is peeing on his own!
Costa has again agreed to my request, no dialysis.....I am so glad that G and I have had many conversations and I know his wants, his lmits, and his desires regarding his care, how far to go, what not to do.... everyone should talk about these things...even though none of us want to....it makes vey difficult decesions, well, not so difficult... fighting to protect G's desires - now that is another story... as Ash would say, STONG LIKE BULL

I again have the conversation happening regarding how to get G home.... this morning the one thing he did say to me was Momma, you are going to get me home right? promise, promise? Yes buddy.... I will get you home.... you just stay strong, focus, and keep the faith... keep your head in the game buddy~

the plan back on the table, the planners put back at work.... we need to keep our eyes on the bigger picture...GET G HOME~ we have alot to acomplish to get this done.... one step at a time....thankfully, Costa is not fighting me on this... he just wants to take our time, go slow, and reach for the best outcome... exactly what we want...

G is sleeing about 22 hours a day, ..... this morning he was up in a chair, got a shave, a facial (ahhhhhhh I know that felt good), a bath and he looks like a new person....

today completed three days of Vit K infusions to bring his INR down. His ammonia levels are up today despite our giving him lactulose (indicative of a non functioning intestine even though vented via the ileo) Costa has agreed we will only dose him once a day on this...

This morning nausea is at bay and prayerfully stays that way. G did take a bit of milk today... about 30cc (a medicine cup) so far, so good....

keep our friend Michael, his Momma Jolinda, his sister Kirsten and his Dad as well as everyone who loves him so ~ he is back on the vent which will help him not to struggle so .... prayerfully, he is re activated and recieves his despartly needed liver soon..

Godspeed

Thursday, November 22, 2012 7:43 AM EST

G moved from the TICU to 12 N last night~ now in 1265

Thanksgiving Day, 2012~

Every year as we gather we take turns going around our table sharing one thing that we are particularly thankful for. This year Mich, Jas and the kiddos will gather with Jason’s family in Zanesville while Ash and Andy and Andy’s family will gather at a farm turned restaurant in celebration of giving thanks~ Michael (Spencer) will gather with the Folmer’s, My brother and his family will gather at my nieces home in Dublin.

Granny and me will be with G~ he will sleep through the day I have no doubt… he only wakes occasionally and even then he only mildly responds…. We will have the parade on tv, followed by football! I plan to put up his Charlie Brown Christmas tree~ (hopefully we do not do another stint in the TICU….

Today, remember G in your prayers and give thanks for his very special life. G has touched so many people in so many ways…. People that we will never meet or know… for this we are so thankful~ Gary’s Journey continues on through the grace of the Lord and the impeccable direction and compassionate attention of Dr Costa. We are focused on success, nothing less….remember Karis, Carissa, Maria, Michael who along with G are fighting…. They are warriors like you have never seen…..

Today, keep our Michael in your prayers…. He will be with the Folmers where he and Karen would gather each year…. Michael, we love you so much and our arms are always around you….. thank you for going out of your way to spend precious time with G and me these last few days…. G took great comfort in knowing you were there…

One last note~~ how can I thank you, there are not words that adequately express how much your messages here on the bridge, FB, and through email mean to us… each is read to G and held near to his Mothers heart…Sherry…. I have delivered your loving message to G and he said he will call you today (I am sure he will do his best and he loves you)

Today, celebrate THANKS GIVING~~ hug your dear ones a little longer and a little tighter….. Happy Thanksgiving!

Godspeed

Wednesday, November 21, 2012 6:14 AM EST

It is the day before Thanksgiving~ my favorite holiday of the year! As you may find your self chopping, mixing, tasting and baking, preparing for overnight guests, and feeling overwhelmed….. just, take a few breaths….. look around you, clearly understand what you are really doing, and enjoy every priceless moment….. the hard work you are doing to create a perfect day for your family and friends to gather, share stories, create new memories and most importantly give thanks for each other, for the past days and those yet to come will no matter what, be perfect…. If the pie is a little lopsided and the cranberries not quite the right sweetness the love will still be there… Enjoy your preparations and keep in mind, it does not have to be perfect…. It just has to be ok. To your surprise, the end result will be perfect

Overnight G has been busy working on getting rid of some of his third spacing (fluid collecting in places where it does not belong) in his incredible hulk arms, neck, chest, back, legs and feet. I am anxious to see his progress this morning. Yesterday Dr Costa talked to me about dialsysing him but the problem with this is once you do it, everything changes. BUN, CR…. Creating an entire new host of issues… I said no…. his kidneys are functioning, we just need to help pull this third space fluid form the tissue back in to the vessels where it is supposed to be (albumin) and help him get rid of it (lasix). Thankfully Costa agreed and we nixed the notion. The nausea has required zofran to keep it under control. G’s mental status has left a lot to be desired so yesterday it was confirmed that his ammonia level has again risen so Lactulose was given. This is a synthetic (man made) sugar which is actually used for constipation. The gift is that it also pulls ammonia from the blood and removes it from the system through the colon. In G’s case, it will be the newly rebuild ileo. Speaking of which… our little intestine is still trying to flex it’s muscle. Under the investigative eye of Costa and my steady hand hold the light we could see that our newly created ileo has changed it’s position but has not gotten loose. This is a normal process for the ileo to find a position but in our case we will keep a very watchful eye that it does not try to return to it’s original transplanted home again. Yesterday it was giving us some air and a minuscule amount of fluid. (not measurable) Over night it did allow for roughly 100 cc (2 fat syringes) of fluid to pass….. Positive encouragement.

G remains in a very sleepy state. He is working hard and fighting with the courage of a great warrior. His determination remains which on a human level I personally cannot comprehend. For every moment that G is in the fight, we remain right in the ring with him providing not only the drugs and tools that he needs to do battle with his own body, and hand to hold on to….a voice in the darkness, and love….the simple comfort of love…

Thanksgiving…. A uniquely American holiday…my favorite of the year… take a breath, have a few tastes along the way, an extra cup of coffee and remember…. It is all about the love….

Godspeed~

Tuesday, November 20, 2012 4:22 AM EST

through the night G has been busy doing battle, fighting, and I am so comforted to know, he is not doing battle alone.... he is being given the equipment he needs.... and Jesus resides in the TICU with him...

G has recieved platelets as his levels fell during the night, and meds to help maintain blood pressure and others to keep the nausea from getting a strong hold, potassium, albumin, mag... dextrose and of course TPN along with his normal host of antibiotics and anti fungals...

Your notes on FB, here on the bridge, through email, are so deeply appreciated and every single one is read and held to be read to G later.... if you have never experienced serious illness, which I think almost everyone has, you have no idea how close these messages of strength are held to this Momma's heart...the sickest of the sick are in the TICU, on 12 N, 11N but more than sick, they are strong, and they are loved....G is a warrior, a little boy, a young man, God's child, and my baby... he is strong, he is brave, he is counting on your prayers.... Please, continue to pray for G as he battles ahead ..

Please keep Brenda's dear family in your prayers.... Brenda is in California and has been on the journey with us since, well, almost day 1.... her precious duaghter Carisma suffered a seious brain injury and her baby son was delivered early via c section... they are enduring so much... your prayers are deeply appreciated...

when lifting G, please lift Karis, Carissa, Micheal who despartly needs a new liver...may he get stable enough to be back on the list...

my very dear friend and G's S Georgia Momma always says wher there is breath, there is hope.... hope.... that is what we all need right? no matter where we are in the walk of life, no matter what our path is... we all need each other and that is what makes life.... where there is love, there is life....as I look out the window and see the darkness I know the sun is going to rise~

your prayers are so deeply appreciated~ we are so honored that you would lift us, and all the brave warriors here in oz and beyond before the Lord...

Godspeed

Monday, November 19, 2012 9:49 PM EST

G is out of the OR, in the TICU

the ostomy has been rebuilt, the tear repaired, and the incision reopened, abdomial cavaity washed, incision closed....

G knew I was there with him and he knew Costa was there as well.... hopefully, prayfully, a quiet night of rest lies ahead.....

sometimes this journey leaves me beyond comprehension, beyond words, beyond explanation..... this does happen, occasionally, but in this case... the intestine decided it no longer wanted to be an ostomy and returned to it's orginal transplanted home....this left a very dangerous situation given the the intestine has been opened and was now hanging out in the abdominal cavity.... not cool at all....our precious little intestine, pink, resilant, and hopefully, secured to the wall and hopefully, functioning.... time will tell us...

Please continue to keep G in your prayers.... please Lord, keep the pain at bay.... lift Karis, Carissa, Michael.... what brave warriors they are....

Godspeed

Monday, November 19, 2012 6:25 PM EST

G was just taken back to the OR.... there is an issue with his ostomy... in simple terms, the intestine pulled back through the opening, and left in it's wake a 2" tear in the skin just below what was the ostomy (just created a bit over a week ago....)

Costa will try to keep this as simple as possible and prayerfully G will avoid the TICU.... there is also an opening in the incision, almost perfectly in the middle, exactly where it tore open a few weeks ago which Costa will take this oppurtunity to reclose...

Pray for comfort first and foremost and the G can be without fear... pray for Costa that his hands are instruments of the Lord and he has perfect direction....

Godspeed~

7:41p going to take longer than first anticipated.... I do not have details and was only told from the OR that it is going to be awhile~ G will need to be in the TICU... Lord.... you know our hearts.... enough said.... Amen

Godspeed

Monday, November 19, 2012 8:18 AM EST

this morning, no nausea.... Thank you Jesus for this mercy....

Gary is awake this morning and asking about the Nascar Chamionship~ well buddy~~ Jimmie almost pulled it off...

the lesions on G's arms continue to heal and we are now seeing more fresh skin than open wounds... the massive doses of steroids and G's over all poor condition have contributed to this issue... small steps!

the incision does have a little tiny opening which is also being attributed to the steroid dosage... we are going to discuss this today.... his lips are pink today (a VERY welcome sight) Becuase of all the fluids G has alot of swelling in his arms, face, neck and legs.. this too is on the project list... G is not yet able to walk but only a few steps... muscle is so easy to loose, so hard to get back but we are making progress... one little step at a time... his mental status appears to be a bit better today..... he is not totally confused but again, still has a way to go... we leave this in the Lords hands....

the sun is shining today, it is Thanksgiving week, preperations are under way to get G over the three rivers and through the woods (we know this is going to take some time and alot of preperation, but we are working hard to make this happen)and we have launched G's fundraising event... We are in deed thankful (more on this later this week) and ask God to bless our fundraiser for G's transplant fund....and continue to bless and protect G as he battles his way back...

Godspeed

10:42 a... first steps... with the help of three phys theapy folks, G took his first steps today... hard, hard work.. now sitting in the chair... we are all so happy, well, except for G... G WE ARE SO PROUD OF YOU!!

Sunday, November 18, 2012 11:01 PM EST

word of the day...... nausea.....

at this moment, I just have nothing else to say....

tomorrow, will be, a better day

Godspeed

Friday, November 16, 2012 6:55 AM EST

peacefulness....

I was wondering what the dictionary had to say about this...undisturbed by strife, turmoil, disagreement; tranquil... in G's world it is 2nd night in a row with no nausea, no vomiting....for which I am so deeply thankful... I know I can hardly begin to undertake ONE more bout of severe nausea.... so how does G do it?

G slept well, not solid but well.... he sleeps most of the time quite honestly...

we are again entertaining the idea of getting him across the three rivers, through the woods to home... home sweet home.... there is alot that must fall in to place before this can happen... first of all... he is still on 5 antibiotics (iv), 2 antifungals, IV pain meds, iv potassium, iv mag, and of course TPN. TPN will be our new companion as G will not be alble to take solid food for a long time to come, maybe never again.... we can run all the IV stuff at home (Momma's become EXPERT nurses and able to run any kind a medical device there is, believe me) BUT, according to hospital policy G cannot leave on iv pain meds... sooooooooo.... if everything can just stay solid for G (yes, I know this is alot to ask and no I am not in denial - I am completly aware of where I walk) we can start to transition G to PO narcotics to manage pain....

We need to secure a medical supplier, get the needed equipment, add a small refrige for TPN and other meds, THROUGHLY clean at home (yes, there is dust even though noone as been there cept Granny) disinfect all hard surfaces, and put G's winter sheets on the bed... add a quiet night light to his room so I can see during the night to change out IV stuff...

G is very weak..... he has diffuculty standing, and can only walk a few steps with assistance... we are getting phys therapy set up for him to recieve at home to work on getting him stronger - all of his muscle has been lost~

and maybe most importantly, figure out the emergency plan.... we must be prepared for the day that something will happen.... not IF something happens, but when... because it will (again, not in denial) We are bringing G home for comfort, for mental healing, to releave his strife, remove the daily turmoil, to let him rest in his own bed, in his own room, surrounded by the things he loves, out here in the woods, home sweet home... PEACE.... this is why we are bringing G home.... for Peace....

It all sounds so simple huh? There is alot on the docket but we can do this..... G has spent most of his life, most of his years actually in a hospital....we are bringing him home..... Peace~~

please continue to pray for Micheal who is fighting galantly in the TICU, for his dear Momma Jolinda, and his loving sister Kirsten.... he too, has a long road ahead.....

we bring G home knowing, believing and having been witness to the fact that all things are possible to a believing heart~~

Psalm 23:1-4

The LORD is my rock, my fortress, and my savior; my God is my rock, in whom I find protection. He is my shield, the strength of my salvation, and my stronghold.

Godspeed

Thursday, November 15, 2012 10:39 AM EST

prayerfully, we are going to dodge this bullet... we are not in the clear yet but the antibiotic added over night (Unison) appears to be attacking the abcess's (there are two of them - one to the right of the incision, one below the new ostomy) Today we will keep the unison on board and look again at the end of the day

this am CT shows fluid just under the incision.... but, it is not leaking this morning.... hopefully good news.... the last thing we want to do is take G back to the OR....

he has a terrible cough this morning but it is producing nothing... we will keep an eye close on it...

G's mental status is becoming a concern....I am convinced that once he is out of here things will start to normalize for him... "they" however are more concerned than I.... this morning he said "OK BUD" "I love you too"~~ who are you talking to G? Ken.... he was telling me hang tough buddy I love you.....OH OK... gotcha.... and did you know that the WWF has to redo thier championship match??? it is all messed up.... and did you know that albumin comes in squares? G says he just needs one more square of albumin...

you have to find smiles where they hide :)

hang tough buddy.... keep up the fignt~~ you are doing a great job!

and to you little abcess's...... GO AWAY!

Godspeed

Wednesday, November 14, 2012 11: 25 AM EST

G is possibly developing an abcess below the new ostomy

the investigators are arriving to take a look see... he is on 4 antibiotics so HOW does he get an abcess????????????

pray this is NOT an abcess and whatever it is it magicaly GOES AWAY

will update later...

Godspeed

5:15 pm HOUSTON.... we have a problem... for sure, we have an issue.... the skin is fire eng red around the ostomy site and all over G's back, the entire back.. there is a pocket to the right of the incicsion that is starting to leak a tiny bit of fluid.... add more antibiotic, get a CT..... what does this mean? we are thinking abcess but where? why? and wrose yet.... how do we attack it head on? surg?

the feeling of getting hit by a truck never gets better... never gets easier... hang in there G......

Godspeed

Tuesday, November 13, 2012 9:06 PM EST

G had a good day.... he sleeps mostly but does wake up... he has no idea what month it really is... he knows Nov because the board in his room says November... he asked me today if they moved Thanksgiving... no honey....they did not move Thanksgiving and no it is not July 4th....

we discovered today that G can no longer walk.... it is very difficult for him to stand... he wants to fall backwards... tomorrow we will order a walker for him and get phys therapy working to help start to recover strength... Michelle (sis) will have a big job on her hands once we get G over the three rivers and through the woods to home... alot of work to be done to get G back on his feet...

we are praying we can make it through the night, which will be a full 24 hours with no NG tube, with no nausea...

we are only focusing on sucess...... nothing else....

Godspeed

Tuesday, November 13, 2012 87:06 AM EST

in Romans... Paul tells us to live our lives "in view of" the mercies God has given us

Therefore, I urge you, in view of God's mercy, offer your bodies as a living sacrifice, holy and pleasing to God—this is true worship. Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is — His good, pleasing and perfect will (Romans 12:1-2 TNIV).

today G is moving forward..... today he will need some potassium replacement, but not blood ~ we have identified the anitbiotic needed to defeat the VRE and are running that too... this morning the NG (nose) tube was removed and the IJ line (multiple access iv in the jugular) was removed and stiched closed.... he looks better today than he has looked in MONTHS....

he is taking ice chips, and today we will add his beloved hot tea back and a single popsycle.... slowly, and ever so carefully... our little intestine appears to be allowing the ileo to work and contniues to be a beautiful pink (I have never loved pink so much as I do now).... steady as we go... we can't afford to fall... Costa said perhaps we should have created the ileo much earlier in the process.... there is no map, there is no book, there is no way to know...rule number one, NO looking back, only forward~

As we are seeing G improve we are deeply humbled and quite frankly, astounded.....for now, we do not know if G will ever eat solid food again.... for now, we worry not.... just a few days ago, we were not even sure we would see this day... by God's grace.... here we are....all things are possible to a believing heart, and we are trusting the Lord to deliver us right where He wants us to be~

Please continue to pray for G, his road is long; for Dr Costa as he has his hands full; for Michael in the TICU and all the brave warriors and there are many....

we are so humbled that you have stayed with us and continue on Gary's Incredible Journey ~~ we cannot walk this path alone.....

Godspeed

Monday, November 12, 2012 5:29 AMEST

G was moved to 12 N last evening....with the agreement that I would stay with him through the night....

his heart rate actually became more stable over night with the only issue we incurred being his respers... when he falls asleep he is not taking as many breaths as we would like to see which brings the staff every 10 minutes to be sure he is breathing.... I am breathing, I am ok says G.... maybe I just don't need as much air as the machine thinks I do... (ok, well, uh... ok)

the other thing that has happened is that the sour, bad beer smell is no longer coming from G's body.... this tells me that the pancreatitis is disappearing....

the newly created ileo is deciding to work.... we are not at optimal as of yet, but.... it is producing which makes us all very happy...

goals for today are....

1. can we pull the IJ from the neck (leaving only the triple luma picc in place)
2. can we bump the diladud out to .5 per hour rather than every half hour?

small steps.... keeping our eye on the goal of keeping a promise to get G home... alot has to happen to make that a reality.... TPN at home, other IV support etc, oxygen support... one step at a time...

thank you all so much for keeping Michael in your prayers as you lift G before the Lord...

Godspeed

6:54 a update~ G came back positive for an unusual strain of VRE.... probably picked up in the TICU.... testing now to see if Vanco will get it OR if we need something else... Vanco will prob not be the drug of choice.... foley pulled this am, monitor off, and after surg the J will be pulled from the neck leaving the PICC as our only access... gaurd that baby with your life...

there is a BEAUTIFUL sunrise this morning.... it's going to be a good day...

Sunday, November 11, 2012 8:21 AMEST

this morning I was reading give thanks in all things, for this is the will of God for you in Jesus Christ.... 1 Thessalonians 5:18

it left me pondering, but actually for only a moment.... then my heart reminded my brain... it says, IN all things, not FOR all things~~ I am not thankful that G has been so sick.. that he has had such a burden... I am not thankful that anyone is so sick as I think of so many that have come in to our lives because of an illness that most cannot imagine.... But... I am thankful for all of the gifts that have come which without the exact situation, would not have been... apparently, I just needed to be reminded....

Last night was relatively quiet for G.. he was stable through the night and we are awaiting his blood work from this morning.... perhaps today he will move out of TICU? hmmm.... I will update later today...

think today of Vetrans Day.... on average, soldiers today who are so far from home and in harms way, are children.... they are old enough to vote, not old enough to drink, and old enough to die by the hands of someone else who knows nothing about them, who they are, where they live, and who thier family is.... Pray for them, thier families who love them so much and for those who were there before them for as long as we have had this amazing country that we have the privilege of calling home...

thank you for your continued prayers for G as he battles on to find solid ground, and for Michael who despartly needs a liver and for the family who will make a painful decesion which will save this precious life... miracles and tragedy... they walk hand in hand....

Godspeed

Saturday, November 10, 2012 11:36 AM EST

G has made a bit more progress today.... the A Line was pulled from the artery in his right wrist.... small steps...

he is getting some more blood this morning but all in all his numbers do not look too horrible today... he needs some potassium as well.... but not too shabby today.... his liver seems to be hanging in there all though we would like to see lower numbers.... maybe in time.... G will be TPN dependant so we will have to be extremely diligent watching the liver numbers... amalyse and lipase are slowly getting better.... another good sign....we are still treating for pancreatitis using octriatide

our new little ileo (which is the transplanted small intestine pulled through the skin and opened) is not quite with the program yet.... it is giving us a little fluid and not so much blood today..... it is at least giving us air which we are happy about... this most precious little intestine has a mind of it's own.... we are determined to save it and are doing everything possible to acomplish this despite it's protests and lack of co operation.... we have a bit more control over what is going on now than we did prior to the surg... not total control, but more than we did... G's belly is flatter today but we need to see it go even flatter.... the line in his neck is working well allowing us to use the PICC for TPN, blood, and fluids....

I told G I had a chat with Grady and Shelby this morning and they love him... Shelby was busy cooking with her Momma and Grady was busy bailing square bales in his living room hay field.... oh how I miss them...

I aksed G if his ileo is hurting him, he gave a slight nod no... I asked if his midline incision is hurting him (all had to be reopened) he nodded, no.. only his right side, low right quad....but maybe not as bad as prior to surg... ir is hard to tell at this point as G is not with it enough to really tell us... all in good time....

I do not know what happened last night with Michael (liver).... I will call his sister later... I am praying he is still in the fight.... his Mother.... well... I feel her pain...Lord be with them...

Father we are trusting and thanking you for allowing us anotehr day....thank you Lord for Costa and Kareem and the incredible skill they bring to not only us, but so many... Lord... where we can, allow us to share your love and available peace beyond understanding... we know not where this journey will take us next, but are at peace knowing we do not go alone...thank you Lord for the comfort you are allowing G today.... it is a difficult path Father in so many ways... we are humbled at your Hand which stays on us at all times... protect Granny while I am away.... Amen...

Godspeed

12:30~ the legs boots have been removed... they are severely bruising G's legs.... we do not want to take any chances of creating clots.... no more boots... in there place, I will excercise G's legs at least 5 times a day.... we will keep them moving..... soon, hopefully, G will be able to do this on his own...

3:13 pm... Michael is in the fight.... he needs a liver very, very soon.... please lift him.... and if it is in the Lord's will..... let it happen soon, very soon....Godspeed

Friday, November 9, 2012 12:32 AM EST

step one.... off the vent~~ accomplished today~

the ileo id producing fluid which has a good bit of blood in it.... the drain is draining a good bit of blood as well but not a steady stream like last night....

G is extremely nauseated which I think is for the most part due to the NG not working properly... I think this will unfortantly need to be changed out once Costa is out fo the OR....

he was just changed over to a PCA with dilaudid, .5 q15 minutes... hopefully he will be aware enough to push the button......

transition from the vent is not easy....it is hard hard work...G will need more blood products today but not sure what all yet....

if we can just acomplish getting the nausea to quiet down today it will be a very successful day...

thank you Linda for the beautiful scarf and adorable angel.... you were so kind to send..... the Angel is hanging so she can be with G when I am out of the room....thank you so much...

please continue to pray for G as he is fighting a brave fight as we stay focused on his needs....

Godspeed

3:50p Please lift Michael who is 29 and had a liver transplant 10 years ago and is having serious, life threatening complications today... remember his Momma, his sweet sister and all who love him as they endure this horrible day......Amen

Thursday, November 8, 2012 7 PM EST

I sat with G for a precious time... holding his hand... I spoke to him and to my surprise he nodded his head, ever so slightly.... I said G are you in pain honey? a slight nod yes... we will fix it honey..... a quick call and an order of fentanyl drip 2 mg per hour to the rescue...

we are tyring to lighten the Propofol ever so slightly in preperation of getting G off the vent... at the same time we must control the pain so not to stress his system and toss his blood pressure out of wack or risk his heart....

Costa stopped in and opened G's eyes, tested them to see how he is responding after this tough day... he is in there... he is in there...

I talked to G about his sisters, about Grady and Shelby, about Thanksgiving.... about staying quiet through the night to prepare for the work that lies ahead tomorrow.. again, a slight nod of his head....you can do this Gman.... you can do this....

G~~ we love you so much.... our arms are always around you... another nod.... we are right here with you honey...

your nonstop prayers..... there is no way to thank you... prayer is making the difference for G... for all of us....

sleep well... tomorrow will bring alot of work

Godspeed

Thursday, November 8, 2012 2:54 PM EST

G is out of the OR, in the TICU~

I have not seen G yet, except for seeing him pass by on his way to the TICU from the OR (they never take tz pts to recovery - always directly to TICU) G is on a vent which allows for his body to rest and give us control over what is happening and to what degree... I spoke with Dr Costa who is exhausted...all night he said he wrestled with what we were planning to do today... he gave up and spoke with Kareem at 4 am, one last time...he said he kept telling himself... Costa.. you need to rest to do your best for G tomorrow....finally, he gave up, came to the hospital to see his patients and head to the OR~ he told me he said a prayer as he held the scalpel in his hand... God... help me.. I assured him, he was not praying alone...

It was very difficult to "undo" what he had just done two weeks ago yesterday in G's emergency surg... once he got through that he ran in to a very dense layer of scar tissue adn could not believe his eyes... he just had cleaned it all out two weeks ago, and a week before that in the exploratory surg....he tried to cut through the thick tissue only to discover it was like cement... the scalpel was no match for this dense enemy... he told me he almost gave up and closed him up....I cannot give up he said to his team... I cannot give up.. G is counting on me to get him better.... a thought followed by a quick call to his mentor in Cleveland.... then a decision.. forget the scalpel get the scissors...ever so carefully but with great force, the cement barrior was breached.... he removed as much scar tissue as possible and washed everything out... he tried to find an area that he could steel a 1 inch pc of intestine from.... another decesion, too risky... scrap that idea... the incision was made and the opening prepared for the intestinal loop to be formed..... the intestine, as stubborn as it is, was quite resistant to the plan.... again, the thought of stopping and just closing him up... NO.. keep working... finally the loop was achieved and secured and the intestine opened... immediatly, a flood of air, blood, fluid poured from our sweet intestine... Thank you God for helping me was Costa's repsonse... another quick call to Cleveland to report the results and antoher quick conference... and the newly created loop ilieo was created....and secured....

G's heart tolerated this surgery well even though is was a long one.... he needed platelets, blood and cyro but he made it through this massive procedure....

G wants to live Lin.. he wants to live.... he has not stopped fighting and I will do everything that I am capable of to help him....came the words from Costa... his eyes tired but relieved.... his neck not as strained as earlier in the day.... tonight, I will be here he assured me....G is going to get through this..

Thank you Lord for your mercy which never ceases to amaze me... sometimes I stop and ask why, how can you love us so much... we leave G in your hands and we know you are loving him, protecting him, and caring for him as he sleeps in sedation on the vent...Whereever you deliver us Lord.. we praise you and thank you for allowing us the privelege of this incredible journey....Amen~

it is not the length of the journey that matters it is the scenes you take in along the way that really matter...

please continue to keep G in your most urgent prayers... the night will be long and the days to come even longer...

we love you for staying with us, for joining us on the journey and for lifting us up even when we cannot lift ourselves....

Godspeed

Thursday, November 8, 2012 5:11 AM EST

the morning is quiet as yesterday was.... the air outside is cold.... halls are void of any people and it is hard to imagine how busy they will be in just 2 hours...

in the TICU waiting room, (well, more like a walk in closet) a couple of ladies sleep in make shift beds constructed of 2 chairs.... the tv talks in a muted voice....

G just went to the OR.... today Costa will try to obtain that precious one inch of intestine destined for research and study..... why take this risk? So that maybe one day there will be an answer... hopefully in time for G but for those who will walk this journey moving forward as well ... to solve the mystery of why a seemingly perfectly healthly transplanted intestine simply stops working, and bleeds.... to this point, there has been no research on this subject and today may be perfect timing given that the bleeding returned last night....

the other goal, the main goal today will be to create the loop ilieo.... a vent if you will for G's intestine... this will allow it to rest, and equally important stop it in it's tracks from destroying the rest of G's transplanted system and his 2nd circulatory system as well as his beautifully constructed arotic graft....as long as it works... we will not know until it is done...

there are so many stories within these walls.... each person who comes here brings with them a rich history and thier own unique circumstance.... outside of these walls, there is a great big world which for the most part does not even know what happens just inside...

for today.... pray for peace for G, for comfort, for protection and that everything goes perfectly just as we need it to, for healing...
Costa plans to take his time, going slowly....He will need to undo all the repair he did just 2 weeks ago in G's emergency surgery to get to our precious system to do the work that needs to be done...yesterdays results from pathology showed no sign of rejection.....even though our precous little intestine is acting exactly like it is in rejection... Pray for Costa that his hands are guided and he is able to achieve all that needs to be done... as he would say, God help us...

we are optimistic, we are hopeful, and we know and never for a moment foget that all things are possible to a believing heart...

Godspeed

(updates will be posted here on the bridge as we move through the day)

10:12 a... no word...

12:02 p... no news~ it's all good... G is in the best of hands~

Tuesday, November 6, 2012 6:06 PM EST

G is resting quietly after his flexi today.... Dr McGraf told me his intestine looks good, relatively healthy and that with his eyes he did not see any rejection...of course, we have to wait for pathology which is not really difinitive... (allthough one would think it would be) it the biopsy was taken from spot X and the rejection is in spot A.... well~ you get the idea...

tomorrow is to be a day of rest... Gary told Costa he does not think that he can tolerate another gastro study.... so that option was nixed...

flagyl has been restarted, along with the continuing doses of Zosan and Vanco... Ablecet (which G is extremely allergic to) will be added tomorrow (it was to have been today, but noone was brave enough to put the order in apparently given G's sensitivity to it) I am sure Costa will take care of that little problem... we will have to pre med him just like we do for Vanco, blood products, and caspo...

either Thurs, Fri or Monday (wide variety of choices) G will head back to the OR..... Costa plans to create the loop ileostomy... it cannot be done on the right side where they typically are placed just above the anastomosis (the junction of the transplanted small intestine and the remaing small piece of G's orginal equipment large intestine(there is not enough intestine to work with there) so it will be on the left side...Costa is HOPING to cut out at least an inch of intestine from the right side and send for study... he is not sure he can do this... there is just not much there.... the ileo will be placed just below where the stomach empties in to the intestine.... the idea is the intestine can then rest....(which it is already doing on it's own)

I am awaiting the diagnosis.... I will go ahead and place my bet... paralytic ileas... otherwise known as pseudo obstruction... our old nemisis... is it possible that our old enemy has found G again and is destroying his precious intestine....

creating the ileas will allow for the system to vent and hopfully avoid the destruction of the biliary tree and everyone who lives there.. liver, both pancs, the spleen, arotic graft.... our prayer is that if we "interfere" with the emptying process by creating the loop ileas we can buy some time to figure out WHAT the heck is wrong... in the mean time, the PRIORITY is to get G home... home to Ohio where he can rest in his own bed, be surrounded but comfort, and be at peace...

G and I have talked hours about Angie, about Karen, about Kevin... about what it means to claim victory. We have talked about heaven and the fact that noone is sick there; everyone is of perfect body; about Uncle Larry being there, and my Dad as well...

How Momma will they know me if I go there? I won't know where to go.... they will know you honey... they will be right there waiting for you... G has not made up his mind to this point but he is clear that if he should leave us for now it is okay.... we are proud of him and he is our hero.....

Make no mistake.... as long as G is in the fight~ all of us who love him are right there with him... G is among the bravest of the brave... he is in good company..... he just wants to go home.... I have promised him that I will make that happen and have made Costa clearly aware that we need to find a way to take G home to the woods in our little house out on the lake....

Pray for Gary as he traverses these rough seas.....and we work hard to get him home... pray for us as we make very difficult decesions... I have talked to the girls and we are at peace... more than anything, we don't want G to suffer....

Pray for Costa.... he is working hard and is not giving up which we are so thankful for...pray for Kareem who is helping us from afar....

we love you G...... no matter what, we love you..

Godspeed

Monday, November 5, 2012 8:37 PM EST

if I had to endure half of what G does.... well... there is simply no way....what a warrior

today a CT of the chest, abdomin, and pelvis was done... no major finds... the intestine is full of air but all is contained within the wall....there is no pneumonia, thankfully... what we did find was the the PICC, yes the one that was just put in last week and caused all kinds of heart issues did a back flip in the the IJ (jugular)

the thought was to pull it and put a line in the neck directly to the jugular.... NOPE,,,,,, sorry, not happening.... I felt compelled to insist that the line be attempted with re thread..... a quick phone call and G was in.... Dr Amesur successfully did a re thread and G is back up and running... sounds so simple huh.... well it took two hours and quite a few pinches...

G shoould sleep tonight... he had alot done today.... tomorrow afternoon he will have yet another flexi.... then, we will consult with Kareem and make some decesions.....

I just hope G rests tonight..... pray for the family in the room next to us as they prepare to allow thier loved one to earn his angel wings....

Godspeed

Sunday, November 4, 2012 6:40 AM EST

G has been moved to 12N from the TICU~

he is very exhausted~todays goal is to get him up in the chair....

the Amiodarone which is keeping his heart rate consistant has been switched from IV drop to PO....

I am anxious to speak with Costa to see where he feels we are now...

for today.... we are just working on getting to the chair...

Godspeed

Friday, November 2, 2012 7:07 AM EST

the good news is G's heart was doing well last night and the drip supporting it started to be reduced....

I have not seen his labs this am so I do not know the status of the pancreas...... hopefully they are starting to look better today...

if you know G you know he is of small stature....physically he appears small, and maybe not exactly strong.... but his spirit.... that is a totally different story... He is the strongest person I have ever known in my life... I see him paying attention with every ounce of his being through his eyes as Costa speaks to him telling him exactly what he needs to do... I see it when he looks at me and lips am I doing ok? I see it when he lips is Michelle alright? is Ashlee ok? I miss Grady and Shelby~ I want to go home...

I tell him.. hang in there G.... we will get you home...we will get you home... a promise I plan to keep....

G is fighting the good fight as they say....we are counting on his heart staying stable so we can get him out of the TICU as soon as possible..... we can do battle with the panc issues on 11 or 12... hopefully over the weekend we will get there... Costa is well aware that I want him out of TICU as soon as it is safely possible... if it means staying with him 24/7 then that is what I will do.... I am so blessed to be able to work from his room... God is so good to me...

for today.... we thank God for Dr Orons who saved G's life yesterday, for the cardiac team who worked so hard apologizing to me that they could not take the normal steps of giving sedation before heart conversion, and for the team who so carefully moved G from CCU to our own turf, TICU~ for Dr Sogawa who did not leave and for Dr Costa who's efforts never stop... we have the very best people in place helping G fight this battle... and we plan to win...

I read G your messages left here on the bridge.... I cannot begin to tell you how touched he is and how much strength he is given through your words.... your continued prayers are so much more apreicated than my words can say...

Godpseed

Thursday, November 1, 2012 2:25 PM EST

let me begin by saying that your messages left here on the bridge are so much more than mere words typed on a screen.... they are encouragment, they are hugs, they are prayers and kindness, they are love.... you have no idea how much strength comes from your heart to ours in the form of little words, typed on a screen.... thank you from the bottom of my heart~

as you are aware from the earlier post of today, G was to have his PICC replaced.... off he went to have this done and because his access is so limited it is very difficult to place a new PICC... there just are not many spots left to access.... in G's case, angioplasty was needed to make room for the new PICC..... G was in the very capable hands of Phil Orons who is one of the best IR docs around..... when he proceeded to do the angio G's heart rate raced to 200 and his pressure fell to 70~~ Trouble!

drugs were administered however G continued to struggle... his heart continued to race and his pressure continued to drop.... he was coded.... the team arrived and administered more drugs however this was not succesful to bring G back to normal sinus .... he was then rushed to the cardiac care unit in Presby where his care was attended to by the heart team... G's heart required three rounds of cardiac conversion (shock) to get him back to rythym...

Dr Costa was in the OR so Dr Sogawa joined the team in the CCU and stayed with G the entire time.....he stayed with him once he was determined to be safe to move to the TICU, and made sure everything was okay... G's heart is being maintained by amiodarone drip which is keeping him in normal sinus....

his amalyse and lipase is very high today so what this tells us is that G probably has pancreatitis which will be treated with IV octreotide....

it has been a very long day, which followed a very long night....but thankfully, G survived what was a serous heart incident.... and is still here, still in the fight

Godspeed

Thursday, November 1, 2012 7:30 AM EST

post transplant complications are challenging to say the least.... as I have shared before, not for the faint of heart..... I must have a really good heart....

let me bring ME up to speed... you all are so kind to come along for the ride and lift us up.....

yesterday we were encouraging G to take small things by mouth.... some water melon (5 little pcs for the record), 1/2 english muffin, hot tea, 2 little pcs of pineapple, 1 bite of paninni bread.... NOT THAT MUCH IF YOU REALLY THINK ABOUT IT..... today......

after a long night of vomiting even with the NG tube in place.... Costa arrived early to replace the tube with a new one... the old one was CLEARLY not keeping the stomach empty enough even though it PUMPED ALL NIGHT....

G's white count took a leap this am so my concern of yesterday of a line infection will be proven today...

the plan (revised again this am)

1. new PICC
2. add zosan and vanco back to the regime
3. decompress the system (this new NG better work)
4. once decompressed, scope from the top and the bottom (call already in to Adam to give him a heads up) (did I mention lately how much I HATE scopes?)
5. another small intestine follow through (did it stop working again?)
6. keep the torturing pain under control with a PCA
7. once the decompression is complete, and the scope, follow through and probably a CT are done, then we make a final decesion... create an ileo? (they tell you this is temporary but anyone who has experience will tell you, uh, it is not temporary - so, we want to be 1000% sure before we head to the OR and create this - G does not have a chimney to work with so.....one will have to be devised through creation from the intestine itself)

today, we are praying for quiet rest for G~ he is exhausted and quite sick again....we are praying for Costa to feel 100% better after being sick himself last night - he says he is at 99% - and Costa asks that God be with us as we surf the difficult waters that we once again find ourselves in....

for me...... Lord, give me patience~ I am not so good at patience~ let me rest and clear my mind and prepare myself for the days to come... to make the absolute right decesions for G as we move forward.... for my girls... they are hurting through this.... for Granny... she fears winter coming without me there... there is alot of on my plate Lord... you have surrounded me with the best people for which I thank you so much...in my heart of hearts I know Lord that you will deliver us right where you intend for us to be allowing us to share the message of the power of having you at the helm... in Jesus name we thank you for the miracles and grace you have provided and continue to do...Amen

Godspeed

Wednesday, October 31, 2012 11:58 PM EST

NG back in... PCA back, .5 q2

possibly tomorrow back to the OR.... we have no choice but to open the intestine, pull it through the skin and build an ilieo... G does not have a chimney so.... Costa will have to improvise....

another long night begins....

rest Costa... feel better... tomorrow will be another long one...

Godspeed

Becca and Meghan.... you are both totally awesome....

Wednesday, October 31, 2012 6:39 PMEST

lately I feel like I have been a bit all over the place... frustration feels more like, well just plain being mad....today g withdrew from his terminology class.. there is not way this is going to happen right now.... he is not strong enough, does not have the concentration, and quite frankly right now is just too sick... he cannot possibly make the kind of investment he needs to do to be successful in this session... there is always later....

today we have taken two steps forward, three steps back.... Vanco stopped yesterday and today nausea and vomiting and increased pain.... I am not sure but it appears to me that the PICC placement needs to be checked...G is shaking and extremely nauseated... I am sure this is a line infection... I have told the nurse who disagrees so I will await the next shift and ask that Costa be called again, not the on call whoever that is... the bracket on the line is at least an inch from the entrace site... is it possible that the line was pulled somehow? (made a note to tt Costa about this as well.. the placement needs to be checked)I fear sepsis.....and believe we are seeing the early stages of it...

I am also wondering WHAT is going on with this back pain... kidney function appears to be fine... so what then??? of course it is right behind the damaged section of intestine from 2007 which appears "relatively" ok as of emerg surg from 2 weeks ago today....

sometimes I feel like we are just stuck in quick sand.... we go left, we go right... I am sure it is just frustration..... I just want to get G better....and take him over the three rivers, through the woods, away from oz to home... for now I would settle to see Costa walk through the door...

Godspeed

Wednesday, October 31, 2012 7:20 AM EST

G continues to make small steps forward... he has been taking hot tea and yesterday some watermelon~

he needs TPN for 12 hours per day to provide his nutrition... small steps...

the sutures remain and will stay in place for quite some time.... taking no chances....

G has a long way to go.... your continued prayers are so apprecaited...

Godspeed

Sunday, October 28, 2012 4:30 PM EST

some tweeking of meds over the weekend have started to address the nausea... not to get rid of it, but address it... G looks better today allthough he continues to be very sleepy and is sitll doing battle with right low quad pain....

his incision is looking good... there is a little redness which we are keeping our eyes on but the drain sites all look good.. no sign of infection..

we are hoping over the coming days to move G to the hotel~ we will not be a hotel transplant as the rates are simply too high but have secured a room at the Hampton which is just 4 minutes from the hospital.... G is to start his terminology class this week so it is going to prove to be a challenge in many ways....

I am wrestling with the possibility of looking for a small apt here in oz... I will speak with Dr Costa later in the week or perhaps even next week to see what he envisions our path to be from this point. Personally, I do not see G heading over the three rivers and through the woods for quite some time..... G has expressed his desire to remain under the care of Dr Costa rather than heading to Cleveland... it is complicated, but I do understand... Costa has gone over and above to provide the very best care that G could have possilby had over these last few weeks.... G knows everyone here, is familiar with the drill, and is comfortable knowing that Costa and Kareem are discussing his situation over the phone.

I have a deep need to get home... Michelle is struggling right now, this has proven to be extremly difficult for Grady and Shelby (make no mistake, they are very much aware that things are not right in any of our worlds right now), Ash still has our little Chelsea, (and has threatened to keep her) and Granny is growing weary of holding down the fort with winter coming on.... I have been driving home roughly every other weekend to fill Granny's prescriptions, restock the cubbards, and do laundry for her.... I was thinking today, that this trip to oz, this experience has been the roughest we have ever had. it has been tough for everyone.... G, Me, Mich, Ash, Shelby and Grady and Gramma as well.... I would ask that you pray for me as I determine our path from here.... first steps, get G to the hotel.... then, we will see.......

Please think of all who are on the East Coast as MONSTER STORM Sandy climbs her way up the coast... my neice Deena and her hubby Ryan are in NJ and Michael is of course just west of Harrisburgh.... please keep them in prayer as this monster storm heads thier way.... Lord protect them and keep them safe..

Godspeed

Thursday, October 25, 2012 11:49 AM EST

today the nausea has made a return as well as the low back pain...

n0t sure what the deal with the back pain is (we have had too many other issues going on to worry about it)

the nausea is possilbly related to the process of the stomach having liquids in there again .... will slow the intake down and see what happens...

otherwise... so far, so good.... this am we had some poo.... and no blood.....

major league great news....

Godspeed

Wednesday, October 24, 2012 4:38 PMEST

As much as I almost cannot believe I am sitting here writing this….. I feel compelled to say I never lost faith…

I along with my entire family, our extended family, our loved ones and dear, dear friends have been preparing ourselves, or at least doing the best we could to prepare ourselves for wherever the Lord was planning to allow us to land after these many weeks or sheer horror…

All of G’s drains were removed today… Costa is so good at removing these normally painful drains….. slowly and talking to G the entire time…

G has been allowed to take ice chips today but slowly… he was allowed to have a cup of his much beloved and missed, hot tea… so far, so good… No distention and only the new normal pain in the lower right quad…

He has not produced poo as of yet for which we all are anxiously awaiting… Costa gave the nurse strict instruction…. I don’t care what time it is, 2 pm or 2 am , if G makes poo, call me

IF, IF, IF….. everything goes perfectly tonight… no issues arise… and everything is quiet… Tomorrow g will be permitted to add jello, pudding and yogurt… but only on a limited basis… (he has to make poo first however)

Then… IF everything goes ok tomorrow, no issues at all, perfectly quiet day and his bili comes down even more (we are in the 4’s today we will start talking about taking him to the hotel maybe over the weekend… G will need to be no further than 3-5 minutes from the hospital~able to stay awake, have no nausea, no bleeding, before this can happen…

IF all goes perfectly, G will be eating soups, jello, pudding, yogurt for many months to come. NO SOLID foods will be permitted… an injury to this degree is going to require many months of healing provided, everything stays quiet and we encounter no issues…

Costa was clear… we are taking no chances whatsoever as we move forward, one little step at a time in the mercy of the Lord…

We need and appreciate your continued prayer…… one little step at a time…

Thank you for lifting G, Dr Costa, me and our entire family before the Lord during this most treacherous time…

Garys most incredible Journey, though grace, continues~

Godspeed

Wednesday, October 24, 2012 6:47 AM EST

the first 24 hours behind us..... no nausea, no vomiting, and the tummy has not distended....

WOW.... I am beyond words....

today G will be permitted to have much desired ice chips.... we will see what happens.... still no poo... but we still have gut noise.....

right side pain persists... one tiny step at a time....

I am beyond words to see G at this point..... we have a long way to go... but at least G is moving forward.... simply incredible

Godspeed

Tuesday, October 23, 2012 6:57 AM EST

I wonder....is it true that the third time is a charm?

yesterday we started to hear gurgles..... not only on the left, but on the right side.... this tiny sound was even more incredible than the very first time we heard it 7 1/2 years ago,,,,,

over night the drainage from the NG was down, the bili came down from the 8's to the 5's (yes, still high but at least headed in the right direction) so this morning Dr Costa pulled the NG~~ hopefully, prayerfully, the third time is a charm.....

we will be on watch over the next 24 hours for the tummy to do whatever it is going to do.... there are a couple of options.... 1. it can stay small which will tell us it is emptying in to the intestine (which is what we are looking for) OR 2. it can start to distend which would tell us it is not emptying in to the intestine (not what we are looking for)

we are hopefull that over the course of the next 24 hours G produces poo.... what a beautiful thing that would be.... we will keep him STRICT NPO over the next 24 hour test drive and see what happens..... either way... here is my plan... (wow I sound like a candidate)

1. if the intestine allows the stomach to empty this tells us that both are working again... if this is the case once G is released we head to Cleveland....we are praying we do not just get blood but actual waste(right side pain persists)

2. if the intestine decides to continue on it's path of being stubborn, the tube will need to go back in and I will insist that G be moved to Cleveland...

let me say this...... my intent on going to Cleveland is not becuase I feel Dr Costa has not done the job.... Dr Costa has provided some of the best care G has ever had in his entire life....and trust me, we have alot of experience~ he is been determined, intent, focused, available, and shown great compassion for G this entire time. I cannot speak highly enough of him.... I just feel like Kareem is the designer of this little monster that we have and I want his eyeballs to see G.... not through test results, and not over the phone.. but to see him..... I want to be sure that the very best is being done for G... that we are not missing anything..... at the end of the day, I have to know, as I always have that we have done everything possible to support G's efforts to live....

for today.... it is so wonderful to see his face without a tube... it feels like it has been forever... today we are asking for healing, the Lord's hand to touch this precious transplanted tummy and intestine, and for continued strength..... If ALL goes well... G will start to have drains removed over the coming days.... we not had any conversation regarding the box stitches....and there are alot of them...

one step at a time.... we are so incredibly thankful to have reached this day..... perhaps... the third time really is a charm....

The Lord answered, "If you had faith even as small as a mustard seed, you could say to this mulberry tree, 'May you be uprooted and thrown into the sea,' and it would obey you!
Luke 17:6

Godspeed

Monday, October 22, 2012 9:25 am EST

10:30 am

DEE DAY

please pray with expectant prayers for results at 10:30 AM that the efforts being made at that hour will WAKE G's INTESTINE UP

I will let you know..... it is either going to work or not....

Godspeed

Sunday, October 21, 2012 10 pm `EST

soooooooooo.... the knock out punch did not deliver much of a punch....this is one tough little intestine!

absolutly nothing happened except for after 6 hours G started to experience a great deal of pain so we had to suck the stuff back out via the NG tube... and yes... we sucked out as much as we put in 240 ml's

sooooooooooo..... tomorrow... we are trying again this time from the bottom.... and THAT IS IT....

then I know Costa is preparing to tell me all about surg.... HIT THE BRAKES.... I have been thinking about this.... I am not convinced that pulling the intestine through, creating a loop, and then an ili is the way to go... I think Kareem needs to put an eye ball on G before we doing any more slicing and dicing....

sooooooooooo...we are game for tomorrow.... but after that if THIS dose not work.... I am insisting that G be sent to Cleveland......

for now....today was pretty quiet thankfully... I washed and cut G's hair which now is curly.... where did this come from??? I haven't a clue..... my once light haired now dark haird son who has never had a curl on his head now has nudreds of little curls... well... except for I chopped em all off..

tomorrow we will get this gastrography enemia done... then, talk about when Costa thinks drains (g has 3) will start to come out....

then.... if nothing happens after the gastriography, we will talk about Cleveland... don't sharpen the knife just yet....

Godspeed

Friday, October 19, 2012 7:04 AM EST

plan c...

change of plans for the day.....

after a very LONG consult with his mentor, Dr Costa has a new urgency and a new plan.... an all out war is offically on to save G's precious little intestine...

1. two more wash outs from the bottom today
2. bolus of solumedrol - much more potent that any other steroid and used to combat rejection
3. let the intestine rest for the rest of today (we don't want to do any more harm than has already been done)

"Primum non nocere" the Latin phrase that means "first, do no harm"

4. tomorrow, early, Costa himself will deliver the knock out punch (we hope) of gastrography.... again, we are PRAYING with confidence and expectation that this will be a total wash out and allow our little intestine to wake up and start working...

5. last resort.... ugggggg.... we will head back to the OR and open the little intestine up, create a loop, and pull it through the skin to the surface. Make a cut which will in short be an ileostomy. This will allow the intestine to have no choice but to let things come through from the stomach. The intestine can sleep as long as it would like much to our dismay and G would still be able to take things by mouth.. an exit ramp if you will...this is news that does not make any of us happy

here is the thing.... we do not have any intestine to loose... if G is resectioned, this has the potential of being catasphroic on many different levels.... there is no intestine to make an ili from hence, the loop and cut (Kareems idea) G cannot be retransplanted and even if he could, this would not be an option that any of us, MOSTLY G will entertain.... bottom line... we must rescue and save this intestine before it's decision to not function destroys G's transplanted liver.. the gases that are being created because the stomach cannot empty in to the gut are backing up in to the biliary tree (home to the liver, spleen, panc, etc, etc) G is on TPN becuase he cannot eat or drink... his bili is steadily rising~ a number which is most assurdly getting everyone's attention. (well almost everyone, maybe I should say everyone that matters)

so.. we ask that you pray that our efforts today and tomorrow to save this little intestine are successful and that we DO NOT find ourselves back in the OR.....the OR is the last ditch effort and G does not want an ili again.... Costa has agreed that G can have ice IF HE SPITS IT OUT... chew, spit.... do not swallow ANYTHING... easier said than done.... he is doing a great job...

Godspeed

Friday, October 19, 2012 3:05 AM EST

soooooooooo... in case you have been wondering what happens when a person has a SBFT (small bowel follow through) when nothing is following through (like from a sleeping stomach) we are about to find out...

after his morning surg today (pray for Costa and his pt who will be in his very capable hands) he will do one.... there are two schools of thought on this...

1. will we actually be able to see WHY, WHERE, WHATEVER is or IS NOT going on in our little stomach AND is ANYTHING dumping in to the gut or is it just sitting in the stomach getting sucked out by the tube... (which is exactly what Costa will have to do if it does not dump in to the gut)
side note~~ I can hardly wait for this LAST EXPERIMENT

2. one of the benefits of this process, IF any of the contrast IS permitted by our little intestine to dump in there is that the gut will be washed out AND this process MAY help convince the gut to WAKE UP

What, I am sure you are wondering is the WORST thing that can happen???? the suspense of it all..... G will most likely be very nauseated and may even sweat profusly..... Costa assures us he will be ready to suck the stuff out if this happens... (I can hardly wait)

so that is the plan for today...... in the mean time pray for releif from the constant dire thrist G is feeling... all bottles of water of any kind have been removed from the room... sterile, flush, water water, all water... he is allowed to brush his teeth....THAT IS IT....

what you may be wondering is the back up plan... you know us well enough to know we always have one... CALL Kareem... that is the back up plan... it may be a beautiful day to fly....

Godspeed

Thursday, October 18, 2012 4:21 AM EST

captains log......

we tried the milk and molasses... there was great excitement in the air~~ everyone on the floor knew we were doing it.... finding milk in the hospital was easy, finding molasses.. well, that took a little doing... Shean was heating, mixing and opsie, dropped the molasses... DARN.... with a quick delivery of more, we were ready...

everyone was optimistic, and anxious

well... our sweet, but growing more stubborn little intestine was less than impressed..... noone seemed to tell him that this was the DAY! NOW WAS THE TIME!!!! He managed to sleep through the entire process and give us nothing but milk and molasses and blood back.....carefully checking for sounds we got nothing...not even a SNORE.... I would think personally that a little intestine sleeping at this rate certainly would be snoring....

well.... there is one more process we can try.... my mind is numb so I cannot remember what it is.. I suspect this will not happen today... G is exhausted, Costa has a cold (and wants to do this one himself - sorry Sogowa..nothing personal) and is in the OR today...

continue to pray for our little and apparently stubborn intestine who continues to be on vacation....and for our stomach who apparently is upset over last Wednesdays events and is revolting by you got it, sleeping...

continue to ask the God remove the nausea... it is unrelenting and G is exhausted from battling it.. we are using both zofran and phenagran to fight this culprit....

Godspeed

Wednesday, October 17, 2012 3:45 AM EST

G had an incredible day to celebrate his arrival to this world..... from the deepest part of this Momma's heart.. thank you all for making his day, this day in particular, so incredible for him.... his room has offically been determined to be the happiest room in the entire hospital! Ecards and card cards have covered the wall~ baloons dance as if there is a spring breeze.... G is still getting through his cards.... he tires so easily which will provide the benefit of making this day last for a couple more....thank you does not come close to how much this day meant to G.... and to me....

yesterday we tried to HELP the intestine empty out... we did have some success but at the same time the only time the intestine did anything was at the moment we were forcing it with fleetz... so end result? we flushed out the intestine to some degree but it will not do anything on it's own.... we did see a good amount of blood loss during our efforts and HH has been being checked q3 so that if G needs blood we can get that done.... in his typical fashion, this will however not show up until later today...

blood cultures were just drawn and this time they are doing them in an incremental series... one now, one in an hour and another in another hour... hmmmmm..... question number one for Costa at 6a

question number 2... would a low dose of erythromycin help us at all? I read the Austrailian and the US study which was done on prairie dogs and both show that there is increased motilin with the use of low dose erythromycin~~ but uh.. what is the risk (it is on Kareem's no no list)

When I awoke to suck G's belly out at 3 am the first thoguht on my mind was... is this our new reality? Is the bottom line that the sweet little intestine calling it quits? How can it look so "realtively healthy" and not function? How can the blood supply be so "perfect" and yet it just lays in there sleeping?

There are still no sounds coming from the belly.... it is quiet like an empty bucket sitting in the desert... the NG is sucking almost a gallon in a 12 hour period which reaffirms that nothing is emptying from the stomach to the intestine....

I will try to quiet my mind and not read any more studies and get a bit more rest... how is it that we Mom's find these crazy studies anyway??? We are like ametuer detectives, scientific investigators... and we just keep looking...in the back of my mind I just keep hearing that little voice saying, Cleveland... I need to get G to Cleveland...but how? hmmmmm

Godspeed

7:02 a plan... NO erythromycin, lets try milk and molasses... just not sure if today, or tomorrow.... a little intestine can only take so much (DUDE, you need to be waking up on your own! END the torture, wake up)

Tuesday, October 16, 2012 5:39 AM EST

HAPPY BIRTHDAY G!!!!!!!!!!!!!!!!!!!!

WE LOVE YOU HONEY~~ YOU ARE OUR HERO~~~~~~~~

MOMMA, ASH & ANDY, MICH & JAS, GRADY & SHELBY, GRAMMA, AND CHELSEA~~~~

Monday, October 15, 2012 6:25 AM EST

after transplant I used to say I have already done the hardest thing I will ever have to do.... turns out, maybe I was wrong.... maybe I am doing the hardest thing I have ever had to do right now...

I think of all the Mom's I have known over the course of G's incredible life.... Sherry, Barb, Sharon, Joan, Suzie, Linda, Linda (another one) Chris's Mom in Az, there are so many more.... of husbands like Michael.. oh that's right, there are not any husbands like Michael... of wives like Darlene, like Nancy, wives like Gail... how does it happen every day? This morning I was laying on my cot in the silent darkness listening to the constant little grind of the IV pumps... and I was wondering how do I find the strength to get through today? From where will it come....

the dark of the night brought with it severe back pain.. you guessed it, lower right.... the fellow came by... and with all due respect... he is so clueless... I honestly am not sure surgery is for him....especially this kind of surgery... he agreed to give G a .5 bolus.... then they could not find the key to unlock the magic stuff... I offered a hammer that I may have in the car.... finally, the bolus then a hit of the normal PCA and some relief...

during the quiet of the darkness the nausea found it's way back to us.... zofran took the edge off and a added dose of phenegran helped a bit... but the nausea is relentless...

this morning I climbed in G's bed beside him and he slept in my arms... quietly, like a little child safe from the world... I know how hard this is for me buddy... I can't even start to imagine how hard this is for you... we can do this buddy...we can do this....

my mind was wondering..... can we do this?

Costa arrived early today.... I can help the nausea and I don't want G in so much pain... we will hold off on our plan to cut his pain meds again today in our efforts to WAKE UP THAT STOMACH AND INTESTINE.... if the back pain returns (which it already is) we will get a CT to try to see why this is ....

the sun is rising....I read my morning devotions.... I am looking for strength... I know I will find it... I always do....it is always there...I will get my coffee, and we will face another day together.... I put my game face on ~ G cannot see any doubt, any question in my eyes.... only hope, confidence....

Costa asked me... do you ever wonder how many hours, how many days you are in the hospital with G over his life.... the sacrifice that has been made.... do you ever wonder... the response.. No.... sometimes I wonder from curiousity about how many hours I have spent in the hospital, waiting, changing bandages, working pumps, IV's, bla bla bla....

this is not love Costa said.... it far surpasses love... I see others who do it... how I wonder...how do they do it...

the same way you do what you do every day Costa...away from your own little girl.... it is simply what we do...

hopefully today's light brings sweet relief for G.... I HATE PAIN and I HATE NAUSEA...

tomorrow is G's birthday... tonight while he sleeps I will decorate... today will be a better day...

Godspeed

Sunday, October 14, 2012 11:57 AM EST

G is making progress... we are simply amazed at how far he has come since Wednesday....

he has talked on the ph to his Momma in Ga, talking to Michael, talked to Grady on the phone and to his Uncle Don...

today Costa pulled his cath and he is peeing on his own~ BIG STEP! the drains are still draining away (he has 3 JP's) but the incision has remained dry... one JP site is dry the other one still leaks but minimal.... this morning we discussed his stomach and intestine and viability.... we are not sure at this point if either one will work again but we are remain positive in our thoughts.... only time is going to hold the answers...... Costa will try to encourage them after G is a bit further in his recovery from surgery.... we must be careful not to move to fast.... the stomach must be stable before we do anything....

Costa told me today that the blood clot from the stomach came back postive for strep... this was probably the infection that caust the wall to give way.... G had displayed no sign of strep~~ no temp, no anything....he is being treated agresssively for this.....

his arms are starting to heal... hmmmm is this strep too? hmmmm.... will ask Costa to biopsy one of the open wounds on his arms.....

G most likely picked up strep here at the hospital..... maybe a visitor walking in the hallway... maybe a person who delivered a tray to G... maybe a nurse with a sick baby... we will never know... for now... we are just thankful to still be here and praying for the Lord to touch this little stomach and intestine and bring them back....

Mark 9:23
"What do you mean, 'If I can'?" Jesus asked. "Anything is possible if a person believes."

we are praying G will not encounter any more complications related to his recovery from his emergency surgery..... enough is enough already.... and we are anxiously awaiting some news from his stomach and intestine....

for G's Birthday info please see the post prior to this... I cannot thank you enough for your contining prayers as G continues to fight his way back.....

Godspeed

Saturday, October 13, 2012 11:48 AM EST

G's birthday is Tuesday~~

please join us in celebrating this very special day, this most special birthday in particular....

we would love to FLOOD G's room with eCards! To send G birthday greetings (for free!) log on to:

https://ecards.upmc.com/default.asp
G is in room 1270, UPMC Montefiore

Your help in lifting G as he fights so hard to find his way back is so appreciatd but we must request that nothing edible or fresh flowers or plants be sent....

your eCards lift G's spirits, help him keep fighting and bring a smile to his face... (yes, we did see a small smile this morning) I do not have words to thank you for supporting G in this way as he battles on ... what a brave warrier he is...

Godspeed

Saturday, October 13, 2012 5:06 AM CDT

Psalm 16:8
I know the Lord is always with me.
I will not be shaken, for he is right beside me.

it has been, thankfully a quiet night... G has rested well.... the bandage is dry... the drain bandages were changed at 5a and had only a small amount of residue on them...

one little step at a time....

Godspeed

Friday, October 12, 2012 8:36 PMEST

Mich arrived safe at home after a brief unplanned tour (opsie, missed a turn) and Michael is headed to his cousins as we speak for some much needed rest (hopefully in a bed, not on a floor) Ash is taking such good care of our baby Chelsea who we miss so much and Granny is holding down the fort out on the lake...

G was able to speak to Grady for a few sweet moments on the phone... Grady and Shelby are missing G and G is missing them.. it was sweet, wonderful and filled the room with joy...

G was moved today to 1270 .... Dr Costa has been with G at least 5, maybe 6 times today... his sincere dedication is quite impressive.... he has made numerous adjustments to medications today and made the decsion to infuse G with cyro (Cryoprecipitated Antihaemophilic Factor) after Michelle and I discovered that the dressing around the site where JP Drains A and B were inserted was bleeding and soaking the thick gauze... fear immediatly filled my entire body...cyro is a frozen blood product which is made from plasma and used to stop bleeding~

the dressing change following the infusion was much improved thankfully...

we find ourselves in a critical situation and Costa has a plan of attack.. keep adjusting the meds as often as needed (3 times today alone) keep the incision dry, dry, dry.... watch the drain sites like a hawk for any sign of leaking, bleading, any moisture what so ever, and absoluty nothing will be going in to that little stomach.... the stomach tear was repaired but this is going to take time to heal...

G's bili did not go down today but rather came up...Costa said this could be becuase G needed so much blood during surgery, or simply his livers response to such a tramatic event, the numerous medicaitons that are being given....or a combination of everything... perhaps tomorrow will bring us better numbers...

Costa agreed to let G come to 12 provided someone is here at all times to keep a close eye on G's dressings and NG tube ... the NG plays an intregal part in our efforts... air must go in via the blue air vent which then pushes any content of the stomach out through the large clear tube...the air vent must work properly so as not to suck the stomach shut (colapse)

we alos need to be sure G does not scratch any of his skin open..... his arms are both covered with open wounds from IV sticks and tape ,,, we are using special wound covers to treat this as these sores must be closed...

G has alot of complex things going on.... we are taking every possible care to ensure that everything is done correctly, and to the specific instrucions of Dr Costa.... we have a very long way to go.... and we are working on getting there one little step at a time...

we appreciate your continued prayers...

Godspeed

Friday, October 12, 2012 5:31 AM EST

to my sheer and utter amazement, I sit here this morning updating on the status of G....

on Wednesday, allthough we never loose faith, I did not think that today I would be updating on the progress G is making... he is an incredible young man who is a warrior and my bestest buddy...

last night was a night of no fevers as G's body is responding to the ever changing medications that Dr Costa is working so hard to perfect to meet the exat needs that G has at this time... the situation we find ourselves in is quite fluid and adjustments need to be made several times a day... Dr Costa has been vigilent, dedicated, unrelenting and postive that we WILL make it through this

what happened to G is highly unusual.... stomach walls simply do not perferate in the manner in which this happened...

Gary continues to fight his way back and there is a very long road ahead.... we are taking baby steps... we are putting one foot in front of the other ever so caustiously... we are stepping in faith...

we all got some much needed rest camped out at CAMP G in the TICU... Mich in one chair, me in another, and Michael again, yes.. on the floor in his sleeping bag.... what an incredible journey....today Michelle will return home to her family.... Ash has been in constant contact and ready to head to Oz at a moments notice... we have to pace ourselves as we have days and weeks of difficulty in front of us.. we cannnot all be here at once or we will all be exhausted at once... we have to tag team....

your continued prayers are needed and sincerely appriecaited... we are hoping to move G to a step down today where we all will be more comfortable.... the road is long... but we are still here, still fighting, and keenly aware of God's never ceasing presence in our lives...

Godspeed

Thursday, October 11, 2012 65:45 PM EST

Psalm 91:2
This I declare about the LORD: He alone is my refuge, my place of safety; he is my God, and I trust him.

Mich and I met with Dr Costa in G's room and he explained how he sutured, the degree of work he did, and how important it is that we surpass hope and focus on success, nothing else...

he told G how blessed he is and how well cared for he has been by his Mother, his sisters... "this is going to be long climb Gary""we are with you, we are caring for you and we are holding you" "you keep climbing and God willing tomorrow we see improved total bili..."

we will camp here in the TICU waiting room tonight to remain close... to tuck G in, and remind him we are right here....we are in this fight with him....

your messages, your most urgent prayers, are so very appreciated...prayer is how we are going to get through this.... for tonight..... we ask for rest, no complications, rest...

Godspeed

Thursday, October 11, 2012 1:01PM EST

Costa managed to get G off the vent... he is breathing on his own with the help of oxygen.....

we are so thankful for this miracle....... Costa said, one little step at a time....G has a very long way to go...

your continued prayers are deeply appreciated

Godspeed

Thursday, October 11, 2012 2:56 AM EST

I hardly know the words to leave on this page tonight.... they won't seem to come to me....yesterday, something horrible happened.... we did not see it coming... noone could have known... well, except for maybe Kareem... but even he... would have been shocked

we did not get to try the milk and molassas treatment..... yesterday around 2 in the afternoon I put G back in bed for a rest after his sit in the chair.... I was working in his room, by the window, only 3 feet from his bed.... "Momma.. something is wrong" what honey... I walked to the bed and g's thick padded bandage, the sheet, the blanket was covered in blood... I pressed with great pressure with my hands and hit the nurse button.... the blood was running through my fingers and I ran to get some help.... G was coded, the room suddenly filled with people, and a young resident pryed my hands away only to place them back telling me to press hard.. Costa arrived in less than one minute... he was calm, kind, but urgent...

another dr arrived who I did not know and Costa was giving orders, calling for an OR, and telling me we needed to get down to the OR right now.... a couple of nurses, another dr, my self and Costa rode G in his bed to the elevator and down to the OR.... as they took G in I looked at my hands, my arms.... again..... I had to wash the blood of my baby off of my body....

I called Michelle and Ashlee and felt barely able to speak....

after 4 or 5 hours G was wheeled to the TICU on a vent.... after another half hour or so, Costa came to the hall and put his arms around me.... we just stood there for a moment and it felt like tyring to catch your breath... a couple of my very dear friends had arrived earlier and stayed with me for hours that felt like days.. Denise... Patty... Kim.... I cannot express....

we listened carefully as Costa explained what had happened..

the wall of G's transplanted stomach had torn open... the fluid poured out through the incision of last weeks surgery and throughout his abdominal cavity... he lost alot of blood...
at this point, we have no idea how much damage has been done....

Michelle arrived late and so did Michael.... today we will decide if Ash needs to come as well... we have to pace ourselves.... Mich, Michael and I stood at G's bedside in our gowns and gloves, stroking his hair, talking to him, telling him how much we all love him...encouraging him to fight, and letting him know we are right here with him.. he is not alone...

we set up camp on the 11th floor where the lights are never out.... Mich and I holding hands on the pull out sofa, Micheal bless his heart, in his sleeping bag on the floor...

I slept for about an hour... I feel sick at my stomach, my heart hurts, and I want to cry.....I feel like somone is choking me.....I want to go home... I want to take G home...where he is safe, where the world is quiet...away from here... away from pain...

for now..... we wait..... calling the TICU every couple of hours.... just to see... is G doing ok.....

Please pray for G, for me... for Mich and Ash, for Michael... for Costa.. for all of us... today, something horrible happened....

Godspeed

Wednesday, October 10, 2012 7:43 AM EST

today there is a beautiful sunrise out our window here in the penthouse (12th floor, transplant)

Dr Costa was here bright and early.... 6:30 am
today we are trying something new, something I am not sure they have ever done here, something from Costa's own book...
(he learned from his Mother, and her Mother)

The idea is to gently but firmly say... hello little intestine.... you are not listening to our requests that you function and spill out, well, body waste~~ (in any living being, this is how you know the intestine is functioning - you get the idea) so today, we are going to have to do something that some may consider, extreme, controversial, and not a usual medical practice....

today we will infuse the small intestine with warm milk (made from dry milk and warm water), and molasses... commonly known as intestinal wash by Gramma's everywhere~ well at least in Brazil~... sounds so harmless right? We will monitor G's cardiac activity closely, watch his lytes, and keep our fingers crossed....

last night we tried a new bandage system on G's arms.... I would say, ok results.... the skin did not absorb the protective layer as we were told it would but we did have ok results... his arms have been cleaned, rewrapped as we are doing everything we can to encourage healing... we are tyring to keep the itching under control for G

the bandage on his tummy has been replaced by some tie up straps (montgomery) so we can keep all tape off his very delicate skin.... the tummy skin and incision look better today... not time for staples to come out yet allthough some of them have voluntarily popped out...

so... today, perhaps we can convince that sweet little intestine... vacation is over.... enough is enough... IF this works..... I OWE a Mother in Brazil and her Mother and HUGE BiG hug....

Godspeed

Tuesday, October 9, 2012 9:35 AM EST

just as anticipated, the NG is back in and pumping away.... G was permitted one glass of ice this morning but other than that STRICT NPO

there are no sounds on the right side (intestine) and faint sounds on the left.... G was so out of it yesterday both Costa and I were very HAPPY to see his eyes open this morning and his arms NOT covered in blood.... I made a stand yesterday and said when I arrive in the morning I do not want G's bed and bandages to look like a murder scene..
I realize we are close to Haloween but really....

today we will get that PICC placed (was supposed to happen yesterday) and get the JT out of his neck... then I will look in to getting him down to the salon on 7 to get a nice hair wash and hair cut (much needed) which I think will help G feel better....

we are ever so carefully at my request cutting back the pain meds... today will move down to .5 every half hour which is still 1mg per hour of dilaudid (A BUNCH) Hopefully G will be able to walk a bit today.... anything to try to force that little intestine to GET IT IN GEAR~

the girls and I have been talking....... Friday may be the line in the sand.... progess or move one way of the other...

so for today.... increased volume of albumin to 500, up on TPN to 1800, wound consult for the arms and legs, no more tape on the belly (we will use montgomery straps to tie him up to avoid more tape tears)

onward, onward.... comeon little intestine.. some cooperation would be apprecaited...

Godspeed

Monday, October 8, 2012 3:04 AM EST

just as I had feared, the belly has been busy distending,,,, take out the tube, add ice, = basketball

I am sure this am when Costa arrives the tube will be put back in....

Godspeed

Saturday, October 6, 2012 11:49 AM EST

a day of changes....

this morning we are hearing gut sounds..... ever so slight but clearly there.... PLEASE little intestine. comeon...you can DO THIS!!!

they upped the iv corteff to 50 mg q8, and PULLED the NG tube.... G is to have nothing at all by mouth today to encourage that little intestine to get the move on.....and at the same time keep the stomach from growing in to a basketball....... Lord have MERCY on us...

they also have changed the PCA system for g.... rather than him getting medicine every 8 minutes he will now get it every half hour.... HOWEVER, the dose is exactly the same.... his regular 1.5 plus .5 bolus all rolled in to two dosages per hour... 1. every thity minutes.. this will hopefully acomplish two things...

a. keep a more steady level in his system and achieve better pain conrol

b. help him more effectively move his pain dosage out a bit.... he can push 1. mg every 30 minutes... OR he can say... I think I can wait another 15 minutes or 30 minutes and then take another 1. mg.... the more we can push out the diladud the more encouragement this provides to the little intestine... but to do this, obviously we need better pain control.... Lord help us acomplish this...

we are additionally parying that with the NG being gone, the stomach does not start to feel too full, or start distending, AND that nausea does not return... we have meds on order to compbat this but this will not be an encouraging sign if this happens.. for now... lets just keep all of this at bay...

today pray for G as he is working hard to get back on top... pray that our little intestine decides he is tired of vacation and checks back in....

Lord.... we leave our sweet little transplanted intestine at your feet as we have been doing..... we are confident, courages, and thanking You in advance for what You are about to do.... thank you for those beautiful little sounds this morning.... in the name of Jesus who is our salvation, Amen

Godspeed

Saturday, October 6, 2012 6:42 AM EST

Friday was a day of repreive...

an ice comprimise was made, 1/2 cup of ice every 4 hours and a piece of tape on the clock marked ICE which moves with each ice delivery so G can tell when the next one is coming.... not perfect but better than no ice at all...

When Sogawa visited in the morning I asked to take G outside before the weather gets cold... he sd GREAT IDEA only problem, the monitor... he said let him tt Costa...

Costa arrived (G was sound asleep) and I said SHHHHHHHHHHHHHHHH and don't touch him! The incision looks good TRUST ME, and nothing has changed... we chit chatted about why G is needing blood every day~ we chit chatted about the shrinky dink who came and got G so upset, and we chatted about the big picture .... next week we need to make massive improvements... Costa and Kareem have decided if nothing happens early next week to WAKE UP our little intestine it is time for action.... OK THEN... we will try a drug that typically is used IV and put it directly in the intestine.... DUDE, WAKE UP hmmmmmm~~~

I told Costa G needs to loose some of the stuff.... the cath, the monitor, the pulse ox... it is smoothering him~ and, I am taking him outside..... no discussion, we are going outside.... Costa said he thought that was a great idea..... he said how are you going to take him out? in the bed? do you need a stretcher instead? I said nope... I am putting him a wheel chair covered in a sheet so his skin does not come in to contact with any anything left by anyone else... ok then... he smiled and said good luck with that and uh, take your phone so you can call for help~~ we will be fine... no problems...

so when G awoke and after his blood run, the monitor was yanked, pulse ox gone, G loaded in the chair and off we went to the garden.... the air was warm and a nice breeze was blowing.. g closed his eyes and kept saying this feels so good..... we stayed out for an hour and a half .... when we got back to his room his nurse ever so gentle pulled his cath...

today it will become cold outside..... G needed that break... it was better for him than any medicine they could possibly give him... he was greated late in the afternoon by a delivery from our dear friend Carol... thank you so very much Carol.... g loves his Happy Pill and so do the nurses and when he is a little stronger he will play that hand held game.... I am sharing the carnations with the nurses since we cannot have flowers in G's room they have brightened the front desk up! Thank you so much for this lovely gift.....

today we will just hang out and watch football when G is awake.... his pain management project is tough.. he is making some progess but it is very hard to move pain meds out when you have so much pain... he told me everything hurts..... his legs, his back, his arms and shoulders... just everything hurts.... his lower right quad is making him remain distended and is so very painful.....

one day at a time.....

Godspeed

Friday, October 5, 2012 8:08 AM EST

TGIF
It has been a long week…. Surgery from just Monday of this week now seems like weeks ago….or, almost like it never happened…

Yesterday was a very teary day for G…. he is struggling with many things as his intestine for what will soon be the third week continues to sleep and not function…. He is very thirsty but not hungry at all (thankfully) and today will bring the ice gastopo… he has been munching on ice almost nonstop but today that will come to an end as the NPO will be strictly enforced…

he has been trying to bump his pain meds out a bit on his own and yesterday did a good job of making it for 2 hours… it is a very difficult task to bump the pain meds out when he is having so much pain. The twist is, more pain meds = a more sleepy intestine…hmmm

I am hoping that the ice can be replaced with jolly rangers perhaps or some kind of throat lozenge.. I am not looking forward to rounds today~~

After all this time the transplant psychiatrist stopped in to see g…. they were having a decent chat until the question was asked…. Do you feel you are a burden to your family? G burst in to tears and cried, and cried and cried…. G has been sick his entire life… not for a couple of years, or a few months, or……. But, his entire life….

A lot of effort has gone in to making sure that he is confident that he is in fact NOT a burden…. The reality is YES, SICK on this level is a burden! When G is sick, we are all sick…… and all of us are sick of being sick! But we are not sick of loving and caring for G…. he is not the burden but the situation without a doubt most certainly is…

G is missing home, he is missing his sisters, Grady and Shelby, Jason and Andy…. he is missing the lake where we live, his bed, taking a shower, eating, being outside, and as of today, will be missing his ice chips…

It is ok to cry because it hurts… it is hard, it is painful…

Thnxxx Doc for all your help…

Keep G in prayer today as we work to get his head back in the game…. Keep my Uncle Al in prayer as his wife, and my Aunt (Janet) earned her angel wings… my heart is heavy that I will not be able to attend her memorial service however, my heart is there and I celbrate her life~

Godspeed

Tuesday, October 2, 2012 7:37 PM EST

new night, new room, and a NEW hospital bed!

hopefully tonight G can rest.....

if you would like to send an eCard it is now

UPMC Montifiore, 1278

sleepless days, and sleepless nights... tonight just let everything be quiet and nice....

Godspeed

https://ecards.upmc.com/default.asp

Tuesday, October 2, 2012 3:04 PM EST

today has been frustrating, painful and, frustrating

sometime today, G will move from TICU to the floor - we are hoping (and trying) to get him to 11 where he was.... he is familiar with the nurses there, and acustomed to how things work... we are waiting for a bed... and I CANNOT GET HIM OUT OF TICU fast enough....

we have been in TICU numerous times... I have never however had an experience in TICU quite like this one... a letter to the director of nursing regarding the definition of compassion and how far a simple touch of compassion can go when a nurse is caring for a TICU patient is in order... use care when untangling the lines attached to the JT in the neck, take time when removing bandages which are attached with tape that tears the skin off when it is removed, explain what medications are you pushing in the JT and oh yeah.... what was your name again?

g is awake today, well, sorta, and his incision looks good and he is taking some ice chips.... his pain is all in the lower right quadrant, just as before the surgery....

Costa is out today so tomorrow we will talk... Sogawa has been doing a very good job at addressing pain as bes as they can.... there is such a fine line between addressing pain and not giving too much and further inhibiting the intestine from coming back....

for now..... continued prayers for comfort, direction, healing.....

Godspeed

Monday, October 1, 2012 2:35 PMEST

G came out of the OR at roughly 1 pm.... to our surprise he is NOT on the vent~~ we are very happy to see this... (one less mountain for him to climb)

Surgery today revealed some things, but others remain at bay.... I have not spokedn with Costa for the second time, but here is a brief synopsis of the initial conversation~

1. impressive amount of adhesions found which were disected...
2. the blood flow is very good to the organs, the circulatory system is working well
3. there are NO mechanical reasons that the intestine is not functioning

ok... end of the good news~~

1. a biopsy of a lymph node from the intestine was done - upon initial observation the lympth did not look bad... but upon biopsy, it was not what Dr Costa would have hoped to see

2. the dorsal end or the back side of the transplanted small intestine is deflated, the ventral side is distended (uh, we knew about the distention before the surgery)

3. as of today, post op, we have confirmed the intestine is not functioning.... at this point, we have no idea if it will ever function again - however, we do not know what is wrong

4. Costa feels we could be looking at chronic rejection.. I will explain that later but wanted to update the you all at the moment...

so for now...... continue to pray... that we find resolution, that pain is controled (struggle) and that the answers come to us... Lord.... if you would be so kind, let that little intestine work again....

where do we go from here? hmmmm... where, do we go from here....

Godspeed

Monday, October 1, 2012 9:47 AMEST

we are 3 hours in and no word..... so we are thinking no news is good news?

Michael is here with me..... how wonderful is he anyway??? We are all family....

We so appreciate the messages of constant prayer as G continues in the OR....

I will update as the day unfolds

Godspeed

Captains log... 12:11
5 hours... no news..

Godspeed

Sunday, September 30, 2012 10:24 AM EST

Today we prepare for whatever is to come tomorrow… we prepare our minds, our hearts, and our spirits…

Tonight as we prepare to rest, I will read to G from Joshua – you will remember him from the story of the battle of Jericho … Joshua was born Hosea, in Egypt, as a slave… he was given the name Joshua by Moses – Joshua which is Yeshua in Hebrew means "the Lord is Salvation."

Moses sent 12 spies to scout out Canaan; of those Joshua was one. Only Joshua and Caleb, who was also one of the spies, believed the Israelites could conquer the land with God's help. Of those spies, only Joshua and Caleb survived.

Joshua was not perfect, but he always relied on God.
The lessons learned from Joshua are obedience, faith, and dependence on God. Joshua provides a bold example for us to follow as he faced many fierce battles, and was witness to many great miracles.

Tomorrow G will face yet another fierce battle… He will be in pre op at 6:30 and surgery will begin at 7am~ this will be the first of two, possibly three surgeries- depending on what is discovered. This is an exploratory surgery… yes; typically I would say RUN FOR YOUR LIFE!!!! In this circumstance, we have no choice… We do not know even after exhaustive tests, what is wrong with G~

We go in to battle with an unknown enemy… We go at the kind and gifted hands of Dr Costa
He is anticipating removal of part of the transplanted intestine. We are guessing this will be the section that was so heavily damaged in 2007. We of course are only guessing… Dr Costa has in the back of his mind what he believes to be the issue… however he will not know until he sees with his own eyes…

He has told us the surgery will be a long one… It will most likely be the first of two, possibly three surgeries… G will be taken to TICU (transplant ICU) following the surgery where it is anticipated he will remain for quite a few days… he will be on the vent, he will have a lot of work to do…

Today as we prepare our hearts, our spirits, our minds… we ask for your expectant prayers… First and foremost, please pray for Dr Costa as he has requested~ That he is given clarity, direction, and is able to identify the culprit who has brought us to this point and do whatever needs to be done to defeat this brutal enemy. That his hand is steady and the instrument of the Lord who we know will be right there in the OR with him…

Pray for G… he is going to need strength. He has a very long fight in front of him… It will be fierce, and will take everything he has…

Pray for us… that we stay focused and strong, that we are in compliance with the Lords plan for our lives and that we have the strength that will be required to face the days and weeks that lie ahead. Let us be in the Lords hands, and know that no matter what happens, no matter what river is laid before us, we will konw and accept that we areright where the Lord intends us to be and He will carry us across…

Your prayers, your expectant prayers are so much more appreciated than you can possibly know… I am not able to adequately express how much your words left here on the bridge encourage and comfort us every day. You have stayed with us for a very long time over many miles of terrain….. once again, we face a steep climb… whatever the path is, we ask for peace, for comfort and strength… perhaps a bit of the trust, obediance and strength of Joshua…

Joshua 1:9

Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”

Godspeed

Captains log: 7:00 pm
tonight, G and me have decided to have a PJ party... G will wear his hospital issued BEST and I my gray and pink jammie poos and pink furry slippers.. we will talk, and read, listen to music until G has his ativan.... sweet dreams

Godspeed

Thursday, September 27, 2012 7:30 AM EST

last night I was talking with my dear friend Patty who has taken me in, and well has been taking care of me.... she asked me what is my greatest fear.... noone has ever asked me that... I have been asked aren't you angry? how are you doing this? are you sorry you did the transplant (which for the record we are NOT sorry), isn't it fun living in a hotel?

what is my greatest fear..... I guess one would immediatly think it would be to loose my G Man... to loose a child, my bestest buddy, my personal hero... that is actually not my greatest fear at all.... allthough if that is God's will, I have no idea how I will deal with that and think of my dear friends Sherry, Linda, Barb... all who have had to kiss thier babies goodbye for a time~ it breaks my heart to think of the pain they have endured.... My greatest fear is suffering, and fear.... suffering.... I have tried to be as insistant as I know how to demand that G not suffer unduely through this wild path that we find ourselves on.... of course, surgeons fix things, that is what they do...they are not particularly good at acceptance sometimes.. so they battle on stopping at nothing to fix whatever it is that is wrong... and that is exactly what we want them to do... but in the process.... the pain, the suffering must be adequetly addressed... G must be at rest, but in the fight, and not fearful of what may be to come...

that is my greatest fear...

so for now.... pray for direction for Costa as he fights on for an anwswer, for direction, for the culprit...he is doing everything that anyone would do, and doing it with character, grace, and bravery.... but most importantly to this point, he is doing it mindfull of comfort....

Godspeed

captains log; 11:00 am

G will need yet another rethread of his PICC today... the one he has did a back flip in his shoulder (these things happen) I have asked specifically for the one interventionalist who I know he does not fear to do this (pays to keep notes)

then... Costa is going to pull the NG and replace it too.... it is simply not working.... the air block is not locking and we keep loosing all his PO meds which are put down the tube.... yesh ... today pretty much sucks...

Godspeed

Wednesday, September 26, 2012 7:20 AM EST

apparently, the test drive is not going so well...

the distention is back, the pain is again severe, and we are awaiting the arrival of Costa...

Godspeed

11 am

the NG has been placed again, and again, thankfully, at the gentle hand of Dr Costa - the drainage is yellow which tell us it is stomach, not intestine (that is green)- what this tells us is nothing is passing through the intestine...which is well, not a good thing

there was no blood in the suction this am so that is a good thing...

the pain meds are still at 1.5 per hour with a .5 bolus q6 for breakthrough...

the revised plan of attack is... deflate the belly again.... this will take 3-5 days depending on how things progress and provided nothing else happens to put a few curves in the road.. once the belly is deflated then we will do a follow through to try to see WHY that little intestine is not letting anything pass through....then, more decesions... prepare yourself for a trip to the OR was the word this am...

I am wondering if we are ever coming home... or will ever make it to Cleveland... Kareem called G on his cell last night.... they had a great chat~ he was very encouraged by G's progess... news from today will not be welcomed ...

for now.. continue to keep G in your prayers... for resolution, pain control, comfort... we are back to a very painful place...

Please continue to pray for Sophie...also for Janet Wirick and her family (my Aunt)She was recently diagnosed with cancer and as of yesterday the docs felt she will be awarded her angel wings in just a short time...

Godspeed

Tuesday, September 25, 2012 6:06 AM EST

a test drive....

with the cath pulled Dr Costa later decided to take G for a test drive..... he came in and said he has been thinking about it and wanted to pull the NG~~ let's see what happens

G was given blood yesterday (thank you to whoever the brave soul was who shared) and he started peeing on his own! BREAKTHROUGH!!

so far so good on the belly.... today will bring to an end the solu medrol.... we will see what happens in the next few days....

for now.... no tubes, no drains..... steady as we go...

Godspeed

Monday, September 24, 2012 9:57 AM EST

G will need some blood today.... we are going to pull the cath to see if we can get him peeing on his own again...

it was decided that radiology will come to him rather than him going to them because we have pretty much knocked his immune system out now with the solu medrol....

Godspeed

Monday, September 24, 2012 4:49 AM EST

If one must be stuck in the hospital I am convinced 11N is the place to be…. The staff on this floor is, well, simply incredible… it is odd how they become your family…

Over the past few days in particular concern has weighed heavy in this room… I decided we needed some humor to lighten everyone’s load… a quick run to Target (they built one right down the road from Oz thankfully…) brought a stick em on the window, gel like stuff, pumpkin patch to life~ we have bats flying around, stars and some goblins too…

It is early…. Soon the sun will be rising and the halls of Oz will be filled with people running here and there doing whatever it is they do all day… Dr Costa will arrive around 7 am to see how things are… G will give him that guitar cd he loves (if he is awake) …we will run over lab results which are being pulled at this very moment… we are prayerful that the numbers that need to go up do; and the numbers that need to go down will comply…

G will pay yet another visit to radiology for a plain film of his chest so we can assess the pneumonia and his belly so we can see what the distention looks like today. On the surface it appears we are making progress………..time will tell…

My office is now completely set up in the window of G’s room… printer, scanner, laptop… I cannot begin to express how blessed I am to be able to work from wherever the day finds me…

Chelsea spent the weekend camping with Ash and Andy at their farm (harvest weekend – they got an entire load of pumpkins and squash!) http://www.tinygardener.blogspot.com/

Grady and Shelby are starting fall off in style.. they both will see the doc today for antibiotics…. ugggggg

Granny is holding down the fort at home and has been cooking away.... who is goign to eat all that stuff? well, seh is having fun~

G has slept most of the night with the help of Ativan… this allows his mind time to rest and gives his intestine a break from the constant infusion of pain meds … the solu Medrol today will be down to 20mg q6…. He still needs the assistance of a cath as well as the ng keeping him empty
Since we don’t really know what we are treating… Dr Sogawa was the first to approach the subject of.. what is going to happen when we complete the taper off the Solu Medrol? The group roll of the eyes was a clear indication that we are not broaching that process as of yet… ok he said… for another day…

For now…. As blood is drawn (a 4:30 am daily ritual) we are so thankful for that PICC and we wait for the lab to do their thing as we wait for the face of the sun to arrive…

Godspeed

Monday, September 24, 2012 4:49 AM EST

Sunday, September 23, 2012 &6:33 PM EST

blood work today almost identical to yesterday....

we did not gain any ground to day BUT more importantly, we did not loose any....

G was restless last night but has had a relativly quiet day with the exception of the NG leaking all over his freshly changed bed....

hopefully tonight he can sleep quietly..... I will stay with him as I have been doing the last several nights...

Michael... you are an angel.... Patty~~ thank you for welcoming me to your home (even though the only thing there are my bags...)

Godspeed

Saturday, September 22, 2012 7:11 AM EAT

today is the first official day of fall.... a day of change, of color, of preperation for renewal...

Dr Costa was just here and we are seeing some signs of response to the treatment plan for rejection... the three biggest things were that the platelets rose today to 64 rather than fell, LDH fell today rather than rising - LDH which most of us know from cholesterol numbers is a great indicator to help us see the severity of tissue damage which is WHY our docs are always worried about it (it has to do with more than clogged veins), and in concert with the lower LDH G's total bili came down today, rather than up

we are a long way from the edge of the woods....but for today, this first day of fall.... Costa and I both were able to take a breath....praying together with thanksgiving and pleas for continued mercies..

steady as we go... we are pushing forward with the solu medrol, the albumin, the unison, TPN, the cath, the NG and the severe change of dosage to the FK (this time, the brain child of Costa)... with strength, and courage, without fear knowing God will deliver us right where we are intended to be while keeping G as comfortable as possible.... last night G was given another dose of ativan... he slept through the night without figiting, without restlessness... he was peaceful...

Be Strong Courajeous, without fear or dread.... Deuteronomy 31:6

Lord we are doing out best to trust as we have done so many times, stepping out in faith, knowing you have us...

Godspeed

Friday, September 21, 2012 6:57 AM EST

as the sun is starting to rise G is resting quietly... the first round of solu medrol is on board and the taper has begun~~ it will be 50 mg q6 for today.....

thank you Emma for your constant care during the night and for your kind and gentle touch... we so very much apprecaite your hard and loving work

Rachel... your are nurse supreme.... how can I thank you for all your help... you told me yesterday you are young... and growing in your career... you are already so amazing~ we were just so blessed to have you when we needed you the most~

G continues to be very sick, and is seriously ill.... Dr Costa checked in at 6a and said.... night number one behind us.... now, let's try to get through today...

we move forward with faith and brave, trusting hearts... one little step at a time...

please continue to keep G in your prayers.. he is a very brave warrior.....

Godspeed

Thursday, September 20, 2012 87:25 PM EST

You promise us peace that passeth understanding;
a peace that we can touch, that has the power to carry us no matter what the circumstances.. as I do the important task of being where I need to be, doing what I need to do, I prepare a path in my mind through which your peace will surround and encompas us, engulfing our hearts...

Godspeed~~

today has been a very rough day..... G has experienced massive abdominal pain, and is very distended... Dr Costa was up and spent a great deal of time taking G to CT, staying with him, reading the CT, speaking with the radiologist....he came back to the floor with G and ever so quietly, calmly, and gently, inserted an NG tube which we hope will deflate the distended intestine...

a foley was inserted, again, at the gentle hand of Dr Costa... G never flinched....

We do not know what is making G so sick.... starting tonight, he will be treated for rejection~ we will start with solumedrol in massive dose, and over the next few days will taper... all of G's meds will now be IV... tomorrow, he will be placed on TPN in an effort to sustain his nutrition...

Dr Costa asked that we pray for God's mercy, and that He guide us to do everthing right.... we talked about hope, and we talked about the cost of doing what it is we do... we talked about G and keeping him quiet, calm, and as out of pain as we possibly can....

Ash is coming to Oz to get little Chelsea and take her to her house...Mich and I will talk later tonight about her coming to Oz... we are getting our game plan in place as best we can... Michael is just a phone call and a drive across PA away.....

I want to share with you if you stop by the bridge..... tonight we enter the darkness not knowing what waits for us ~ however be assured, we do not enter with fear, and we are not alone.... as G would say, we are visiting the darkside.... we have been here before....

we ask for your expectant prayers of compassion, of peace, and most particularly comfort for G.... he has battled his entire life.... through this time, all we want for him is comfort as the Lord brings to the place where He intends us to be, whatever that is, whereever that takes us... we are trusting, and believing and we wait for tomorrow with hopefull, and faithful hearts...

we love you and thank you for your prayers, your support and for holding us up when we cannot hold ourselves..

all things are possible to a believing heart~

Godspeed

Wednesday, September 19, 2012 7:03 PM EST

at long last... G is awake....not to say he is dancin the jig, but he is back with us...... the Lord is so merciful...

he has lost 9 pounds since Sunday.... one step at a time...

Godspeed

Monday, September 17, 2012 8:45 AM EST

blood work today, holding...

:)

Godspeed

this afternoon, G had a seizure.... his legs, arms and torso were affected as he shook out of control... Dr Costa and Dr Sogawa were here immediatly and witnessed this very unusual event... G has had an EEG which looks good, a chest XR (he is having difficulty breathing-probably fluid) and we are awaiting the Neurologist who is in the house and reviewing his history.... we are awaiting a head CT..... it will be a long night..

a dose of ativan has quieted the legs and arms but not completely...

it will be one very long night...

Godspeed

Sunday, September 16, 2012 10:25 AM EST

turning the corner?

after a very rough day yesterday filled with nausea and vomiting, G's blood levels were in the stable range today... his platelets are increasing, not in size as with hemolysis but in actual count! Hopefully, this will slow or stop the bleeding....

for now, no surgery! Thank you God!

we will look closely at his blood work tomorrow and again Tuesday.... then maybe, just maybe he is going to catch a break...

Pease keep a dear little girl Sophie in your prayers... she is smart, adorable, and recieved a confirmed diagnosis Saturday that she has crohns.... Sophie is nearing her 10th birthday....

Psalm 136:12
with a strong hand and an outstretched arm,
for his steadfast love endures forever;

Godspeed

Friday, September 14, 2012 5:05 PM EST

THANK YOU SO MUCH LINDA for the surprise delivery of wonderful,happy baloons and hard candies! So perfect for a not so perfect tummy... thank you so much!!

you brought BIG and much needed smiles to my face!

HUGS to you..... thank you so much

G

Friday, September 14, 2012 7:47 AMEST

with a pca in place, the pain is much more manageable... thank God...

even with all the blood loss yesterday mysteriously the HH bounced last night... (I give up-there is no logic)

Costa was supposed to confer with Kareem last night.... what to do, what to do...

I will wait to hear the outcome of this conversation and then press for an exit strategy.... I was hoping to be in Cleveland by today... but uh.....

anyway.... G and me so deeply appreciate your notes here, and your love.... it so helps to have so many arms around you....

It is funny how people who are quickies, (in - out in a few days or a week) always are so QUICK to whine, cry, bla bla bla... so..... last night when on the way out there was a lady having a melt down becuase her Mother was supposed to get kicked out last night.... this was delayed until today.... she was just carrying on, calling on her cell phone, yelling.. bla bla bla...

she hung up and unfortantly got off at 5 with me... she said this place is rediculas... yeah,,,, it can be... my Mother was supposed to get out and they can't get thier act together... hmmm.. sorry to hear that... how long has she been here... since TUESDAY! IRRRRRRRRRRR.... oh.... well.. uh, today is only Thursday.... so Tuesday of THIS week... YES... lady... seriously? you need to get a clue.....

Godspeed

upadte: 10:30
now has pneumonia in the right lung, starting in the left - will change from Unison to Zosan....

irrrrrrrrrrrrrrrrrrrrrrrr ~ so much for Cleveland...

Godspeed

Thursday, September 13, 2012 10:49 AMEST

today began with increased pain, and a large amount of blood loss...

the hemolysis has been ding better~ I am anzious for todays labs....

waiting to see Costa..... they were kind enough to privde G with a heat pack to try to calm the intense right side pain..

Godspeed

Tuesday, September 11, 2012 7:22 PM EST

September 11..... never forget.....

7 years ago today, our dear Angie recieved her transplant... Linda.. our hearts are with you on this day.... we love you and ask the Lord to engulf you in His peace....

this morning started out with YES we will get the rescope done today... NO, there is no room on the schedule..back to Costa will stay in the GI lab to do the scope, THEN, a no show of an out patient opened the door...

Costa joined Adam in the procedure room to do the flexi himself... one way or the other he was going to reach the chimney and beyond to get a look at that piece of intestine that we cannot get to.... I have no idea how he did it, but Costa was successful and did reach that little elusive section.... the good news... the suspect Chronic Rejection has been, for the most part, dismissed... the chimney looks good, and does not need to be resected... Thank you Jesus for this... above the chimney, on up the intestine, there is inflamation, ALOT OF IT.... there are also two large internal lesions (those precancerous pesks from our past) which could not be clipped or banded but one in FACT was mildly bleeding as Costa ever so delicatly pushed past it....

Adam and Costa both talked with me after the procedure and said they want to cover G with Flagyl and Unison for the next 12 hours solid... in addition, starting tonight they will treat the lesions with steroids....to quiet them down (hopefully - this is rather an experiment)

the Hemotologist stopped in to say G's hemolysis status has improved... WITH the treatment plan that KAREEM and COSTA put in place is working... the bili is better, the HH is holding.... the haptaglobin is still off.. but.... small steps...

We are prayerful that we are on the right track.... that things are moving.... this day closes with reflection, thanksgiving, and forward motion...

come on G... you can do this....

Godspeed

Tuesday, September 11, 2012 8:34 AMEST

after another day of no resolve..... we are heading back for yet another flexi... this time, Costa will be there with Adam to try to get in to the chimney..... Costa's thought is that there may be more chimney (in laymans terms, where the transplanted small intestine is attached to the remaining native large intestine and where the ostomy once was) and perhaps this is inflamed and causing the GI bleeding that has returned over the last few days...

once the scope is completed, then Costa will again speak with Kareem for a brainstorming session.... this is an extremely complex issue that we are trying to find a solution to....

the blood work from yesterday is still pending... hopefuly today we have answers from that....

G is having increased pain in the lower right quad

Please think of Jason's family today as they lay Grama to rest.... I think over time of all the major family events that I was unable to be available for... it is startling... Costa and I talked briefly about the sacrafices.... from both families and physicians... it is mind numbing... He was struck from his conversation yesterday with Ashlee about the amount of time in her and Michelle's lives that I was not with them... not present.. becuase of being at the hospital with G...

ok.... back to the present.... praying for Jason's family as they endure this day.... and praying that we can find some resolution for G...

hugs Michie, Ash... Grady, Shelby.... Nanny loves you so much

Godspeed

Monday, September 10, 2012 7:41 AM EST

today we await results of testing for paroxysmal nocturnal hemoglobinuria (PNH) and G6PD deficiency

I am anxious to see G's blood work for today.... hopefully making progress on the hemoloysis... then, can get him to Cleveland..

Godspeed

Saturday, September 8, 2012 11:49 PMEST

it was a quiet day.... more steroids on board, a quiet day.... hopefully now, peaceful sleep....

hopefully 3 - 4 more days, then... Cleveland...

Godspeed

Saturday, September 8, 2012 5:04 AM EST

Michael.... thank you so much for showing up at our door... I hope you have recovered from G's chit chatting... we love you so much

yesterday the hemotologist came to visit telling us that they would be studying G's blood smear (sounds like fun huh?) to determine what type of hemolysis G has... in the mean time the coombs test came back negative THANK GOD (which means there is no graft vs host doing on) again, THANK GOD!!

our good friend Sogawa pd a visit on his morning rounds and shared his opinion that he is not convinced the G has hemolysis..... WHAT????????? I GIVE UP!!!!!!!! a response of OK was all I could muster... he asked if we are going to Cleveland; I said yes... he asked if Costa and Kareem had discussed G's situation, (I have been doing this long enough that I know Costa and I knew he had already TOLD him they talked) so, I said yes... I said Kareem asked that G be treated for the HEMOLYSIS for the next 3-5 days to get him more STABLE then bring him to Cleveland... (in the meantime, all of G's records can be prepared and this will take some time) G has had a return of some rectal bleeding which everyone always wants to see..... so this info was shared with him.... His visit was very upsetting to G which prompted a brief visti from Costa to reassure him... (poor Costa... he has his hands way more than full)

in the afternoon, the hemotologist returned along with his two fellows... yes... the official pronouncement from HEMATOLOGY~ G HAS HEMOLYSIS! OMG, verification never felt so good.. I may be the only person in HISTORY who has ever been HAPPY to have a dx of HEMOLYSIS.... the type of hemolysis appears to be a rare one.. so two more test are scheduled which we will have done on Monday (they are only done M-F) which will allow them to tailor make the treament plan.... in the mean time, the hemotologist agrees with the treatment plan that we are on from KAREEM and COSTA....

I am just hoping we see some improvement today on the bloodwork... at least this will start to confirm that we are headed in the right direction... the rectal bleeding... well, that is another story... I have been researching, and am starting to form my own opinion about that but we will see... the jury is still out....

for today...... almost in perfect timing the storm will pass through the area... this is the week we were supposed to be on our beach vacation... our family, Mich, Jas, the kiddos, Ash, Andy, me and G and Chelsea too were all going to meet up at the outer banks for some rest and recovery... another time.....for now, we deal with the rip tides right here....

Godspeed

Friday, September 7, 2012 3:48 AM EST

I know you have heard the saying, sometimes you have to move mountains…. Well, sometimes you have to move a mountain range

The morning brought a brief morning visit with Dr Sogawa and his followers of practioners whoever they are: following him around like little lost sheep (not that they have a choice) his still blank face asked G once again, how are you feeling? G’s tired eyes were his only response… OK I COULD NOT HELP MYSELF~

Sogawa….. H E M O L Y S I S!!!!! G is suffering from hemolysis… He advised me that yesterday a hemolysis study was ordered STAT~ I said… Yes.. which by the way was moved to TODAY given that yesterday G was in the middle of a blood transfusion of 2 units yesterday IRRRRRRRRRRRRRRRRRRR

At that point, I said you know…… I want to move G to the Clinic so Dr Kareem can put an eyeball on him, get him diagnosed, and get on with treatment before we destroy his liver, damage his already damaged intestine even more that we probably already have, and get him back on his feet. OK, we can do that; I think he is STABLE and we can do that was the response….STABLE??? OMG save me….. and help me keep my mouth shut and the door open

The only thing I felt bad about was, I had not been able to speak with Costa directly… but I knew it would not take long for word to travel that we were heading to Cleveland~ and I was right… not only did it travel around OZ, but also Cleveland… as I signed paper work, and there is a lot, to move G forward to what I knew would be treatment of HEMOLYSIS I felt peace and hope that too much damage had not already been done

Our PA came to see us (who had been on a much needed and well deserved brief vacation) came to talk to us about one of the meds G has been on for roughly 18 months, and the most recently added erythromycin. Dapsone which was added to replace Bactrim some time ago has the side effect of causing HEMOLYSIS. Hmmmm…. The erythromycin which I specifically had asked, ARE YOU SURE this is OK TO ADD (it had been on my list from Kareem of drugs G should NEVER be given)should never have been given. (see, I am not out of my MIND after all)

Costa came up in the late afternoon… pulled up a chair and looked at G and said buddy… you look terrible… I said, he has HEMOLYSIS… he looked at me… yes, yes he does.
SEVERE HEMOLYSIS… IRRRRRRRRRRRRRRRRRRRRRRRRRRRRR

A direct coombs test was immediately done (which should have been done 3 weeks ago) which will measure for antiglobulins which attach themselves to the red blood cells and more importantly, Costa called Kareem and the three of us chatted…. Kareem agreed 100% with the action that Costa was taking and between the two of them, a plan was hatched… the same one we had in our LAST BATTLE with hemolysis IRRRRRRRRRRRRRR (I have only been saying for 3 weeks G has hemolysis)

The bottom line….. first of all, Sogawa will no longer be making any decisions or writing any orders when it comes to G’s care, no discussion. I know he will have to round and quite frankly I CANNOT WAIT to see HIM this morning~ we will remain in Oz a few more days and Costa and Kareem’s plan of attack will be put in to action. In the mean time, the paper work has been started to move G to Cleveland and I expect to move in a few days…

It has been a frustrating day but at the same time, one of resolution… I just pray that the damage done has been minimal… Time is going to tell… In the mean time, my resolve is to move G back to the care of Kareem...

Today, my son in law Jason’s Grandmother earned her angel wings….and my Aunt Janet was diagnosed with kidney cancer… please remember both of them and their families in your continuing prayers…

Godspeed

Wednesday, September 5, 2012 11:02 PM EST

Have you ever sat by a river and noticed the way the water flows…. Sometimes, it rushes around the rocks with great speed and motion… sometimes it just seems to sit in one spot and swirl in circles… sometimes it ripples and even rapids then suddenly, falls over the rocks and floats forward as quiet as can be…

Today, I have been a river…. Rushing, swirling, rippling and rapids… but tonight, as I close my eyes ~forward… confident and quiet…. Doing what I need to do…seeking out the opinions of the most knowledgeable that I can find...

I had a lovely chat with Kareem…. We discussed G’s current situation, status and the issues that are occurring. I felt better just talking to him… like peace had come to a troubled Momma’s heart and found that I could breathe again…. If you are the Mother of a child who has spent an entire life sick, I mean, really sick, you know what I am talking about…. No matter what happens, no matter the outcome… you have to, at the end of the day, when you close your eyes you have to know that no stone was left unturned, no bridge uncrossed…. You have to know that you were in line with God’s will….

Sometimes things happen that seem to tell you, this is the direction, this is the right turn… when that happens and you can clear you head and put everything in order, Peace comes… then you know.. yes.. this is the thing I need to do…
Tomorrow, will be that day for us….

We need to move forward and for us, that means getting G to Kareem… yes there will be days when I just want to knock his head off (probably an hour after we arrive) but at the end of the day I know in my heart of hearts just as I did when I brought G to Pittsburgh on a cold and snowy day in December 2004, this is what needs to happen… I guess G said it best… as one door closes Momma, another one is opening~~ we just need to be brave and walk through….

I have no idea what is going to happen tomorrow or how things will unfold... Lord, please give me wisdom, focus, and calm direction...

Get you walkin shoes on buddy…

Godspeed

Wednesday, September 5, 2012 10:24 AM EST

the angio from yesterday did not reveal any bleeds... this does not mean there is not one there which is evidenced by the fact that G is getting 2 more units of blood as I type...

there was an irregularity in the lower right quad of the exam, not a bleed, but well, it looks like dot dot dot

an angio normally shows the vessels as clean lines that look a bit like pencil lines on a paper.. on the lower right side there are lines, then dot dot dot...

in my heart i believe G is experiencing another bout of Hemolysis and have asked that they repeat the study AGAIN

I am not confident that the ship is not running a muck without the captain here... I have sent him a text and asked him to call.....

Ash has prepared my room there in preperation of moving G to the Cleveland Clinic...

pray for me as I seek the BEST thing to do for G at this time.... I have set emotion aside and will need to make the decesion ....there are many factors, issues and concerns.... in the end, as I have always done, I will do what I trust in my heart is best for G

Godspeed

Tuesday, September 4, 2012 8:19 AM EST

over the weekend, G's blood levels fell to thier lowest rate yet... H/H was 7/22 YIKES

he has been given potasium, mag, phos and of course... blood

the plan for today is to get his angiogram done~ the effort is to find where the bleeding is coming from, and where is is going to (no longer leaving his body rectally)

this morning found G very nauseated, needing both zofran and phenegran.... the vomiting finally has relented and he is sleeping...

he is a bit scared of the angio.... but... we will get through this...... we reamain expectantly faithful and know we are in God's most gracious hands...

I am asking for eCards once again to encourage G and lift his spirits.... if you would like to send an eCard to help encourage him, and fill this place with hope please go to:

https://ecards.upmc.com/default.asp
Gary Howard, Montifiore 1166

I will update after the angio...

Godspeed

Psalm 39:7
"But now, Lord, what do I look for? My hope is in you"

Friday, August 31, 2012 1:13 PM EST

so much for the plan.... readmitted, Montifiore, 1166

possibile sepis... but honestly, they have no clue

Godspeed

Thursday, August 30, 2012 8:55 AM EST

G slept through the night.... today, very nauseated, off balance, and exhausted...

we shall see...

we are due to see Costa 8 am tomorrow...

Godspeed

Wednesday, August 29, 2012 10:00 PM EST

sometimes things happen that we cannot understand, get our minds around, or just plain figure out...

yesterday, it appeared that G was in need of more blood and platelets... the repeat blood pull indicated that there was a rise in his counts, every so slight... so.... the conservative decesion was made to hold...

the Nuc Med Study was done this morning taking almost three hours with the powerful Nuc Med Scanner looking at G's entire transplanted system.... it could not have been MORE PERFECT! no leaks, no obstructions, strictures...perfection at it's finest....

today's blood pull indicated that the H/H along with the platelets rose on thier OWN!! Frist time in over 3 weeks...

one last BIG change... it is important to understand, allthough most may not know ...Gary's incision site which runs from the breast bone to the pelvic bone has remained open all this time... it has never healed... Dr Kareem and Costa closed it in 2007 when they did his life saving surgery following the puncture of his transplanted duodeum...but wtihin 7 days to the day, it was once again open which it has remained since... This morning when the dressing was taken off to be changed.... the wound is almost completely closed with fresh, beautiful pink skin now growing....

When Costa arrived this afternoon to discuss G's status and where we go from here... he sat down... what is going on with G??? What are we doing differently to cause these changes... he then shared with me that he reviewed the last 3 flexi report and pictures... the first 2 both show the lower anastomosis with eroding tissue (which we thought was the initial culprit causing the bleeding) In the 3rd flexi, the most recent one, the tissue is completely healed with no sign of erosion... HOW IS THIS HAPPENING???? WHAT is DIFFERENT???

two things.... one, we changed G's bath soap.. probably meand nothing but in G's case.. one never knows...

the second thing? Erythromycin... G has never had this antibiotic before...it is commonly used to treat used to treat infections caused by bacteria, like bronchitis; diphtheria; Legionnaires' disease; pertussis (whooping cough); pneumonia; rheumatic fever; ear, intestine, lung, urinary tract, and skin infections BUT NOT IN TRANSPLANT patients!

We do not know what happend to cause the GI bleed; we do not know where the blood was coming from: we do not know what is changing things and we do not know why? But something is helping G get better.... he is at the hotel, pale and tired... but stable...

tomorrow will be a day of rest for him.... I have to run to Stubenville, Ohio to pick up more Erythromycin becuase I cannot buy it in PA due to insurance restrictions (S T U P I D comes to my mind) and Friday more blood work to see where G is......

please continue to pray... for this is where the most powerful change of all comes from....

for now.... sleep tight and sweet dreams..

Godspeed

Wednesday, August 29, 2012 5:11 AM EST

Have you ever heard that saying know who your friends are and keep them close~~ but more importantly, know who your enemies are and keep them closer?

Let me bring you up to speed… a lot has been going on over the last couple of days so forgive me for my delay in updating the bridge… first of all… Michael who for the last 7+ years along with our beloved Karen has been a very special part of our family, came to visit from Chambersburg… we had such a lovely visit together, our eyes moistened and our hearts smiled.... Michael I cannot thank you enough for driving all that way ~~ we love you so much… you were such an encouragement to G~

G’s scope finally happened today…. It took an hour and just as I had anticipated, gave us no insight in to where the bleeding is coming from or what may be contributing to this problem…. The logical next step is angio gram.. the issue with angio is, if there is not active bleeding the angio will not be able to see it…. IRRRRRRRRRR

Over the weekend I was reading about an exam known as abdominal scintigraphy with 99mTc-labeled red blood cells. This is a highly sensitive Nuclear Exam which is used to find GI bleeds of this nature. It is a bit like an XR from the inside out as the isotopes are injuected into the body and generate pictures which will run like a movie to the outside eye. It is not however, full proof. This morning this test will be done. It will take between 1 and 4 hours….

Today…. Pray with expectation that this test will allow Dr Costa to see the bleed…. If we could just find it, we can then talk about what needs to be done to repair it…. But first, we have to find it… (keep your enemies closer)

G has been so surprised and so filled with joy to receive the eCards that continue to come… he was not able to read the ones that arrived yesterday but will do that today and I will hang them on the wall where he can see them. Love and HOPE is filling the room… how can I thank you for that?

Godspeed

Monday, August 27, 2012 4:22 PM EST

the GOOD NEWS is.. G recievd so many eCards today!!! Thank you so much... he read every single one and was very surprised to get them! they are hanging on the door now...

you lifted his spirits and let him know he is not in the battle alone... how can I thank you? HUGS ALL AROUND~~

the bad news.... uh..... the exam got bumped to tomorrow :(
it is going to take more time than was available today so Dr Slivka moved him to tomorrow - I am PRAYING it can be done in the am becuase after 4 days of no food, G IS STARVING.....

we are praying that the scope provides the info we need... I was able to speak with one of the NUC Med gurus today and she advised that the test i researched is highly sensitive, and very able to find micros.... the PROBLEM??? you guessed it... has to be an active bleed....NO PROBLEM, right??? just give him FOOD! uh.... he has to be NPO for this exam.... IRRRRRRRRRRRRRRRRRRRRRR

well.. hopefully tomorrow.....

thank you so much for taking time from your busy day to eCard G.... he loved them so much!

Godspeed

Monday, August 27, 2012 7:40 AM EST

today we will have another Endo.... unfortantly, not until this afternoon... but on the bright side, the eEards that are being sent to lift G will be here when he awakes :)

thank you all so much!

the link to send an ecard is:
https://ecards.upmc.com/default.asp and pick a card....
it will be room 1187 in Montifiore...

G is felling a bit better as of this moment... Thank God for some relief...prayerfully, today the endo will provide the answer and we can get on with it.... I am NOT being PESIMISTIC but I am SURE today will not yield any useful information... I "accidently" discovered that the last endo before the FOOD one showed a thickening of the stomach wall...(I have to research this some more - spent time in the medical library reading but... need some more info)

I talked to one of the Nuc Med docs and the nuc med study is highly effcient at finding GI bleeds.. HOWEVER... uh.... the bleed needs to be bleeding when the do the test... IRRRRRRRRRRRRRRRRR

anyway... we await the endo; are going to remain optimistic; and keep searching.....

thank you again for sending eCards for G! He will be very much suprised when he wakes up today to see them!

Godspeed

Friday, August 24, 2012 9:05 PM EST

let me quickly update... then, get to the important stuff....

G is suffering from a suspected micro bleed somewhere in his transplanted intestinal system... we are pretty sure it is not in the top, and pretty sure it is not in the bottom, which means, it is hiding in the section of intestine we cannot reach via scope or endo... so, we cannot see it...

the attempt was made to take a look via endo, however, because G's stomach has decided it does not want to empty, they could not see a thing due to "risidual" (food from days ago which has accumulated because the stomach thinks it is on vacation)

over the weekend we will keep G on clears (lots of popsycles) and we are giving him an antibiotic which will cause his belly to empty out (we hope)

on Monday, he will have the endo repeated (for the 4th or 5th time - I am loosing count) HONESTLY, I do not expect this to yield any information.... the next step is an angio, through the femoral to have a look around.... again, allthough I HOPE this yields some info, the micro bleed may be so tiny that they will not be able to see it... I am contacting someone in Nuclear Medicine to see if they could possilby SEE this little devil via bleeding scintigraphy which I found by researching the internet.... you never know... this is how I found Kareem to start with...

I will update on Monday to let you know....NOW, the important stuff...

Gary is struggling with severe depression... he is nauseated, in pain, and generally, miserable... this is not like him... he told me he is frustrated, he is sick of feeling sick, and he is just sick of it.. he wants to feel better, he wants to get back to his life... G is working hard to finish up his last assignment in Alegebra, and the exam... here is where YOU COME IN! I really need your help.. when G wakes up on Monday, after the procedure... I would like him to wake up to a flood of ecards experssing love and encouragement, some smiles and laughs... to send G and eCard, simply go to

https://ecards.upmc.com/default.asp and pick a card.... it will be room 1187 in Montifiore...

You all have helped with this before and I thank you in advance for your help again...

one more thing..... if you are able to be a blood donor, please consider the life you can save....

thank you so much ~~

Godspeed

Thursday, August 23, 2012 6:03 AMEST

waiting to head for yet another endo/flex and ercp

hopefully today, some answers..

Godspeed

LONG story SHORT
G was on the table, and they had to abort the procedure becuase G's stomach was full of old food (yuck, right?)

so, this confirms what I have been saying for a year, that his stomach motility has slowed drastically, (I can hear it with the stetoscope)

so over the next 3 days we will continue to maintain G as needed... blood, potassium, phos, whatever his body needs, keep him on clears, LOTS OF POPSYCLES, on sun use a drug to clear the contents of his stomach, and on Monday..... put him back to sleep, and try again....

if the ENDO in particular does not yield some clue as to where this BLEED is happening, then FINALLY, Costa agreed to an angiogram from the femoral... wow.. what a great idea

Godspeed

Tuesday, August 21, 2012 10:21 AM EST

no scope yesterday... Slivka has such a loaded schedule and we need HIM to do this... so we still wait..

this am I requested a back up plan... IF the scope cannot be done today, by 4 or 5p then I will bring G back tomorrow for blood work, and whatever he needs - blood, potassium, phos... whatever.. then will bring him back on thrusday for possible scope (I know scope won't be tomorrow - Slivka is out)

PICC is working fine but is extremly bruised and very sore...

until we have the scope, still no ideas.....

just keeping him stable... (and trying to keep him from being crabby)hmmm not an easy task right now

Godspeed

Monday, August 20, 2012 9:56 AMEST

G's HH has risen ever so slightly so no blood needed to day.. but he does need an 7 hour run of potassium...

Costa is talking to Slivka today while the postassium runs to see if G can be scoped today... he wants Adam to do this becuase they are looking for specific things and Adam knows G's complex system extremely well...

Adam thinks he can get him added, but not sure when..... so.. while potassium runs, G will sleep, and we will wait (like uh... we are not going anywhere for the next 7-8 hours..)

hopefully today the mystery starts to reveal itself and we can get on with treatments whatever that is to get G better and back home...

Godspeed

Friday, August 17, 2012 8:16 PM EST

the CTA (CT Scan, Angio) looked great... the scope looked good but, they did find hidden, possible CDIF....we are waiting for pathology... the tissues that have been eroding looked a bit better, probably thanks to rest from not eating, not pooing... but uh....

so for now....more blood...another unit tonight..... and hopfully pathology is back tomorrow morning and we can make some progress.. they want to know for sure if there is CDIF hiding out in there before we start shoving prednisone in there and make matters worse rather than better...

to those who are giving blood, and bedoming aware of the need, thank you so much...

I mention type O becuase O is the universal donor... leterally anyone can get type o blood

G is an A (like you Nancy!)

Godspeed

Friday, August 17, 2012 109:29 AMEST

so the BEAUTIFUL news from the CTA is.. everything looks BEAUTIFUL!!

no tumors, no PTLD, no obstruction, no increased lymphs, no dimished blood flow, PERFECT!!

thank you Lord.... so... today, we will scope him again to look at those little agrivated tissues, and figure out how to deliever treatment to them to get G better

answers are never simple, uncomplicated, or well, black or white.. but this is VERY GOOD NEWS IN DEED

now.... we just have to keep the tissue quiet until we figure out a delivery system...

Godspeed

Thursday, August 16, 2012 11:57 PMEST

the calm before the storm...

after giving G 2 units of blood, his counts were lovely on Wednesday.... Wednesday night he bled out...

for those who have never experienced this, well.. I pray you never do... we have experienced this too many times to count or remember and it never becomes less dramatic or terrifying..

to make a long story, and I do mean long, short... G has been released from TICU to step down, PICC in in place (thank you so much Dr Buck for all your help, kindness and compassion) and tomorrow the CTA will HOPEFULLY point Costa to the problem and allow for him to make a decesion on how to address this....

if you are an O pos.... please, donate blood....

G's spirits are good, he is very tired and not sure where he is, but.... he is good

Godspeed

Wednesday, August 15, 2012 12:40 AMEST

let me just say... they are adding a much needed 2nd bathroom to 7 west! just think about this for a sec... 30 tx pts on the floor...10 of them getting spa and lasix... one potty room... UGLY

anyway.. here is the problem that is causing the bleeding, and here is plan A

G does not have a large intestine... you really don't need one to survive, life is probably nicer if you do have one... but... any way... when G's transplant was done they kept a little tiny piece of his orginal lrg intestine and connected his new small intestine to it.. the reason was so eventually they could close G's ostomy and he would be line and bag free which is exactly what took place.... the problem is, for WHAT EVER reason, the tissue inside of the intestine at this connection, is well... not happy to say the least... it is eroding away....this process is exasperated every time G's little intestine empties out (he poops - sorry to gross you out, but.. poop is our life) causing the tissue to start bleeding... the bleeding was in such an amount that his body was able to keep up with the daily blood loss...HOWEVER, now that the tissue has let EVERYONE know it is NOT HAPPY and NOT messing around anymore the blood loss is too great for his body to compensate for...

hence, the need for 2 units yesterday~~ the PROBLEM is.... they are not sure how to treat this tissue... first of all.. they have not seen this before (wow, what a surprise), 2nd issue.. uh~ the tissue is up inside so not the easiest thing to get to....SO.... they are working with pharmacy to try to create some steroid solution in liquid, but packing a walup we can start treating with...stay tuned...

if this does NOT work.... then..... then....then..... they will need to open up this connection, remove the section that is causing the problem and create a new connection... OMG it sounds so simple.... well, it's NOT.... and for now, we are only calling this plan B, which is not a firm plan and subject to change becuase NOONE even want to think about touching that precious transplanted intestine...so for NOW, PLAN A

today G just needed a run of Phos.. but tomorrow, or the next day or the next day... we will need more blood.. calling all you TYPE O's out there....

Godspeed

Monday, August 13, 2012 4:20 PM EST

heading for the local ED with a UPMC order in hand for blood... yikes.. not sure they can get the special blood G needs...

going to be a long, long night

Godspeed

8:42 pm there is no CMV safe blood to be found in Ohio... so plan B - pack G in the car and head for oz for a transfusion... OSU nota, Cleve Clinic nota, Cincinati Childrens nota, hmmmm...

so.... if you have blood in your body and you are able to do so.... please donate blood... someone out there is counting on you...thank you so much for sharing with us.. we need you...

it is going to be a very, very long night....

Godspeed

Saturday, August 11, 2012 6:12 AM EST

it's a mystery~~~

the biopsy went well and G tolerated fine...aside from being very sleepy~~

they did find some interesting irritation which they are not sure what it is.... so.... we wait for path which will not be back until Monday....

so for now.. heading home to wait for the phone call to come to tell us what we need to do about this mysterious tissue and to get some much needed rest.... will head back to oz in roughly 2 weeks as long as everything goes ok...

for now.. packing up, heading across the three rivers and through the woods....

Godspeed

Friday, August 10, 2012 7:18 AM EST

next time you are at the hospital... note the interesting things that you see.. and of course the never ending stream of interesting peps you see, and then, the seemingly tons of little conversations that go on around you~~

G is in his biopsy, almost done actually~~ there is a sign in the waiting area (where by the way, only one electrical outlet actually works but funny enough, they have lovely little lamps sitting all around - they just dont have any light bulbs in them) any way... back to the sign. hand written and says in RED LETTERS (so it must be quite serious) DO NOT TOUCH THE TV and in black letters, (must not be quite so important DO NOT TOUCH THE TV~~ well.. I mean it is on CNN so WHY would anyone even think to touch the friggin TV??????????

oh well.. there was a really cool dude in here waiting for heart cath who is a pre lung tz ... he had the cadilac of scooters! this thing was awesome! had two motors, places for his three giant oxygen tanks, hooks to hold the numerous bags that seem to come with all pts to the hosp (only when they are rookies- we were one of those bag toting pts at one time) and man did that thing shine! BRIGHT RED! He was sharing with an older guy that he was a very successful business man and things like this did not, were not supposed to happen to him... ok.. it caught my ear immediatly... WHAT????????? so only, unsuccesful not businessmen get seriously sick???? Oh well... he had come from Presby Hospital in NY of Dr Oz fame... and now is in Oz for his new set of lungs...

well... G is done with his procedure so will be heading to the recovery room to sit with him while he awakes... Brian was so kind to start his IV this am when we arrived which we so very much appreciate.... one stick.. thank you Brian.. you so rock...once we leave here, then to 7w for alb and lasix.... then hopefully..... home tomorrow for 3 weeks.....

Godspeed

Thursday, August 9, 2012 4:34 PM EST

tomorrow bright and early... 6 am, biopsy

then, blood, then treatment for fluid overload~~

going to be a looooooooonnnnnnnnnnnnggggggggggg day

Godspeed

Tuesday, August 7, 2012 9:53 PM EST

the plan.... tomorrow, blood, and then see Dr Roberts and get relclast treatment

Wed night and Thurs do prep for biopsy Friday 6 am followed by another treatment for fluid...

for now... some rest (I hope)

Godspeed

Saturday, August 4, 2012 8:15 AM EST

it all depends on who you listen to~~~

yesterday G had another run of spa and lasix, with a phos chaser... endured iv's on both sides so things could move along at a quicker pace (4 hours vs 7) because phos and alb do not get along with each other

we met Dr Hiro... first impression? I am sure he is very book smart coming to Oz with a Harvard Medical degree... but he has a loooooooooooonnnnnnnnnnngggggggggggg way to go... we had a brief discussion regarding hemolysis until, ok.. I just could not take it anymore... (I did not just get off the boat yesterday and sometimes, my patience is well.. nearly non existent)

Dr Costa had stopped in to take a peak at G, always calm and very much in control of the ship..... making progress G...(allthough in one day 3 pounds of fluid had returned) G, take the weekend off...if you need me, call me... give your veins a rest, take a mental break... come in bright and early Monday~~ let's talk, see where we are, discuss moving the anticipated November surgery up to now (to address the ongoing bleeding issue) and get on the fluid again... OK, see you then...its all good ok G? yep....all good..

then enter Dr Hiro as everyone has taken to calling him... why are we doing hemolozation study.. there are indicators of hemolozation, how often are you getting blood transfusions, when was the last time we treated you with IVG, how much steroids are you taking maybe we need to up them.... be here tomorrow 6 am for another treatment... WHOA DUDE.... slow down~ Oh I think we met before....

time to step in.. first off.. NO, we have never met you before ~ are you aware that G is a one of a kind multivisceral? oh.. did not think so... and oh, by the way, we just talked to Costa and G will be here meeting with him on Monday~~ he needs a day or two off to rest his veins (we have very limited access and not eligible for a PICC)
Doc thought would be a good idea to come in today for treatment of fluid, and blood work.. sometimes, you just have to give up the argument, and then call the Boss as G says...

so after driving to the hotel, a quick call to oz and a simple question... who do we listen to, Costa or Sogawa (Hiro) explaing the situation... a call back from Bill, then Barb with a message from Costa... see me Monday.... you listen to Costa...I did not even have to bring the bitch in me out today....

THANK YOU (on Monday I will make it perfectly clear to Hiro, that with all due respect.... I don't trust him at this point... he is not familiar with G, with his plumb job, with his unique issues.... so he will need to stand off, listen, and learn.... and for a very long time to come, and probably never, will he be calling the shots...

it really IRKS me when some doc just assumes that you are so not in the know and upon the first moment of coming on the case, they are the go to .... uh.. not... i knew the moment he was explaining hemolosys to me that he did not have a clue regarding G.....

anyway....... we will keep the legs up, keep them in compression socks, (aside from some much needed pool time) and hope that we can get through the weekend with no breathing issues...then, head to Oz on Monday....

hmmm.... Oz.... it stuck me as I share my thoughts on this page... the Wizard is gone.....

Godspeed

Thursday, August 2, 2012 8:47 PMEST

it was a long day but we made some progress.. another round of alb and lasix, and a full run of phos.. HEY G~ what the heck happened to your PHOS???

anyway..... tomorrow back to oz, 6am to do it all again.. tomorrow going to start duel IV's run all the stuff at one time and hopefully get G out of there early....

G is hanging in and his usual, unusually incredible sense of humor and good spirits are still quite in tact... what an amazing warrior!

we shared alot of memories today... Angie, KP, Kev, Jim, Warren, Chris...so many others that we have stood by helplessly as they earned thier angel wings..... but today, nothing but smiles... the pain, just below the surface, but today.... no tears, not allowed, not today~~

G and Nurse Patty who is one of the most amazing people on the face of the earth talked light heartedly about earning angel wings, and life as an angel....noone would say something like, well let's not talk about this... not in our world...the message so much deeper than it appeared on the surface... . the journey is about living, life abundantly, filled with things that never seemed possible.....but now are reality...
as I listened to them talking about thier wishes I kept thinking to my self about life..... slow down... but don't wait....

G was blessed to see Kareem on Tuesday on 7 West... it was Kareem's last official day in oz.... he removed some sutures from a pt next to G and then came to just sit and talk... why do you need blood honey? let me see your belly~ hmmm G, we need to get rid of some of these meds...as thier eyes met, the tears were just under the surface... I love you Kareem... I love you too G... a long hug and this mothers heart was left to take in this special moment, sealing it forever in my mind... everything is going to be ok G... ok Dad... G, you always know where to find me... never forget that... we have been through alot and I am so proud of you... yes we have.... I love you Kareem...do you trust Costa? yes, yes I do... its all good...

driving back to the hotel (on Nevil Island not hotel transplant as the rates there have raised beyond our reach) G talked, I listened.. the tears, just behind the sunglasses.... it's ok G.... it's ok to cry... nope, no crying Momma... it's going to be ok....I am going to miss him....

a litle pic nic for dinner by the fire pit at the hotel as the Ohio River rolled by... now we wait for Olympic swimming..

tomorrow we are at 7 W bright and early... Brian will be waiting...6 am arrival time to start rockin and rollin...

Godspeed

Wednesday, August 1, 2012 4:44 PM EST

drats... another crack in G's leg.... hmmmmm...

we see Costa tomorrow.. hmm.. what to do, what to do...

Godspeed

Tuesday, July 31, 2012 9:09 PM EST

The quiet of last night found us driving through the woods and over the three rivers to oz~

G was unable to stay awake for most of the trip and slept the few hours at the hotel before we left to see Costa~

G has his normal alb and lasix treatment Friday and Saturday found him to be even bigger than he was Friday…. Sunday even bigger than Saturday~ HEY!!! This is not how this is supposed to work!?! WHAT IS GOING ON????????

Then as if I were not watching, as if I would not see…. Like a sneaky snake in the dark… G’s left leg cracked open in two places… below his knee… his skin was shiny and taught like a drum… the swelling had become too much for his skin to bear...

The wounds were carefully cleaned, silvadine applied with a sterile bandage, and compression stockings on….

Monday morning the call was made and to my surprise on the 16th G’s H/H had dropped to a dangerous 7/29 WHAT????????? And NOONE CALLED ME????????????

As of today, the swelling is subsiding, the two wounds are healing beautifully… another double run of alb and Lasix and an infusion of beautiful, perfectly irradiated blood and G is again stable…

Tomorrow G will rest, and Thursday will find us back in the hospital …we will take another look at where we are…and have the conversation of rather we can wait for surgery to correct an ongoing bleeding problem or if we need to take action now~ until now, G's body has been able to keep up with his daily blood loss..

today, another bullet dodged… So listen up little monsters~ we are always watching, always mindful, and always alert…

Godspeed

Tuesday, July 10, 2012 10:15pm EST

wow.. what a week it has been

a week ago Fri a HUGE storm blew in.. and I mean BLEW! 80mph winds for about 40 minutes.... 4 homes near us are smashed to the ground, one is about 40' off it's foundation... we are blessed... We were very sad to have to cancel our visit with Michael....Micheal if you stop by here I will be in touch...we will get your visit back on! We cannot wait to see you and miss you so much~

we did not have power for a week so we had to purchase a generator or would not have been able to stay in our home with the temps climbing to 103 with humidity to match...

Friday's alb and lasix treatment was a welcome thing.... AIR CONDTIONING! Power is back, generator stored away (for a long time I hope)~~ now.. if we could just get our internet to stay alive... yesh

tomorrow we head for oz~~ biopsy Thursday, blood Friday, see Costa Monday.... it is going to be very strange walking in to oz knowing that the Boss as G calls Kareem is not there... for those who have not heard, Kareem is making a move to the Cleveland Clinic.... this has been very difficult for him as he has been at UPMC for 23 years and invested his life blood, his energy, his expertise and yes, his heart there.... he love his patients allthough I know if you are one of them (of a parent, spouse or sibling of one of them you are saying WHAT?) I always tell people Kareem is a doc who you love with all your heart and want to knock his head off all at the same time.... We wish him well as he moves forward on his journey....

for us... we will be speaking with Costa and making decesions... allthough, we are pretty sure of our plan...

for now... sweet dreams and please keep us in your prayers as we travel through the woods and over the three rivers to the land of oz~~

Godspeed

Monday, June 18, 2012 7:45 AM EST

5 sticks, no luck... last attempt was a good vein but when the cath hit a valve, it did a back flip~ IRRRRRRRRRRRRR

so... we wait.... for another brave soldier to come to the floor to try again... Vern, our standby in anestheia is off today.. bummer...

Holy Mary full of grace~let this needle go in place...

Godspeed

update, 10:47 a two more sticks, iv in... meds running... PLEASE IV, stay up

Godspeed

Tuesday, June 12, 2012 98:16 AM EST

a dear person in our lives reminded me of someone today... Randy Pausch ~ if you have never heard of Professor Pausch, please, do yourself a HUGE favor and google him... better yet, buy his book... The Last Lecture...you will be so blessed

she posted one of his quotes.... it struck me right in the heart...

“The key question to keep asking is, Are you spending your time on the right things? Because time is all you have. ”
¯ Randy Pausch, The Last Lecture

another Friday passed last week and our local hosp was unable, after 9 attempts, to start an IV for G to recive his alb and lasix treatment~~ ENOUGH he declared! Let's try again on Monday..... which we did... and 7 more sticks later, IV in... it lasted just long enough for his treatment~ thank you Lord...

The Key question to keep asking is..... are you spending your time on the RIGHT things? Time is all you have....

one thing I have learned is that time is the one thing you can never get more of.. it has been predetermined and nothing will change it.... the trick is, noone knows when thier moment of glory will come and they will be called to fly away~~ each day we all face our own battles.. some greater than others... the point is.... make today count~ do something that really matters... with someone you really love.....

G has recently taken up fishing~~ he can do this and relax in a lawn chair, without too much effort.... he is enjoying trying to catch old "marvin" who has apparently lived in the lake for some time now... he is a crafty old bird who can eat the bate right off the hook and I am convinced that he just waits for anglers to come and bring him dinner... the key thing about fising for old marvin is that it is not about fishing at all... it is about watching the sun set, quiet conversations, laughter, deep thoughts and peace... peace in the heart...

Godspeed

Friday, June 1, 2012 8:11 AM EST

today G is at the hosp for his alb/lasix... so far on the IV attempts, 0-2

uggggg

prayers.... let this needle go in...

Godspeed

Friday, May 18, 2012 6:57 AM EST

it is a beautiful morning~~ hail Mary, full of grace... let this needle go in place~~ (thank you for this Patty)

off we go for alb and lasix~~

Godspeed

Thursday, May 17, 2012 76:58 AMEST

last night G's feets were ice cold and his toes blue... it was late and he was tired.. so I had him soak them in a very warm bath, put nice warm socks on and see what happened... he slept through the night and this am when I took a pead as he was sleeping his feets are toasty watm but the color of the toes still off....

hmmmm... wonder what this means.... will make a quick call to oz to let them know of our interesting development... tomorrow is alb and lasix and yes, he REALLY needs it this time....pray those veins let us in ...

Godspeed

Monday, May 14, 2012 54:14 PM EST

this evening, if G can stay awake, we will go fishing.... in the quiet calm of the waters washing against the rocks I will have to tell him that we have lost yet another person who was such a force in our lives~~ I learned that in the past few days, Maureen Como earned her angel wings... Maureen flew away in the middle of a conversation, just talking.... her heart suddenly stopped beating and God carried her home...

Maureen was the longest living liver/intestine transplant on earth and in August would have celebrated 22 years. She was always fun to see, always had a positive word, always encouraging... Marueen... we will so miss you...

over the past few months, the past few years, so many have been torn from our lives but not from our hearts... it leaves you feeling numb.... noone talks to you about this part of living in the world where we all walk. About loosing so many people who are so dear to you.... and the impact it has on your own life~ sometimes I feel like my heart cannot take the pain one more time. At the same time, we are so honored to have such heros grace the pages of our lives~ most people would not know people like these amazing brave warriors in the entire existence~~ and we are so blessed to be surrounded by them~~
Please remember Maureen's family, her many friends, and her transplant team as they endure this tragic loss....

pray for Angie's family... it has been just over a year since beautiful Angie claimed victory over her failing body and went home to care for God's furry little creatures... my heart still breaks every time I think of all she endured and of her Momma in particular... I cannot imagine the pain...oh what a blessing little Angie was~

G talked to Sherry who is Kevin's Momma in south Georgia yesterday for Mommas Day... they are well.. but the pain, still very real... we love you Kev....continue to pray for our South Georgia family who we love so much~

the pain is still too raw for us to speak of loosing Karen... Michael... we love you and hold you so close in our hearts...

the one thing I know for sure through all of this is that life can change in literally, a blink of an eye, a breath, a silent moment... truly, miracles and tragedy walk hand in hand.... thank you Jesus for loving us through this, for your grace and allowances, and for holding us up when we cannot hold ourselves...

Godspeed

Friday, May 11, 2012 9:16 AM EST

Mother’s Day Weekend~

You don’t know me, we have never met. But on this very special day you are foremost on my mind and in all of our hearts. They say that time heals all wounds…. I know as a Mother that cannot be true…

The edges may get softened, the pain may be a little less intense, but heal… no, I don’t think that is possible. My own Mother like you lost two of her babies and I as her daughter experienced the pain of standing beside her in her pain. I have very dear people who are very close in my heart who have endured what you have endured and I quite frankly don’t know how they live through it… I think they simply find a way to keep one foot in front of the other and somehow find beauty in each day~

On this Mother’s Day, we are thinking of you, not with sadness, not with tears, but with hearts that are filled with thankfulness and are deeply humbled that you, your family; in such an unthinkable moment could have made a decision that would have such a profound effect on so many other lives..

I have no way of knowing if you ever stop by here on the bridge to visit, to check in, to see how things are going… but if you do I wanted to tell you that as one Mother to another, we love you from the deepest parts of our souls and pray for you, and for your family every night before our eyes close as we have done for the past 7 years. Every day comes with its challenges but let me assure you Gary has life because of you and God’s amazing grace… he is fulfilling his dreams and doing things, some of them the most simple things that without the circumstance of tragedy and miracles walking hand in hand and
God’s intervention, he would have never done.

How can I say thank you, such simple words with such deep implication… I simply do not know the answer to that question

To all of you who have your children today, love them and hold them, keep them close… and if you, like me have a very special child who was helped, saved, or touched by the decision of another Mother pray for her as I know from being someone who knows where you walk, you do

Happy Mother’s Day to all~~

Godspeed

today G weighs 105 so we will forego hs iv treatment this week to give his veins a rest~

Sunday May 13 - yesterday me and G went fishing~ as you know from the bridge, G went deep sea fishing thanks to a special gift from Scottie too hottie~ this a new first experience~ it took us hours to figure out the ART of putting the line on the spool, and we still don't have the weight and bobber quite right (already have purchased new bobbers and weights) but there we were, sitting in the early morning breeze by the lake, fishing... we did not catch anything but some lake grass (seaweed), a little sunburn, and almost a water snake.. but what really matters was G's face... it never lost it's smile~ G slept all afternoon after our excursion and today weighs 110 ~ we will see what the day brings... I never knew a fishing pole, a bottle of gateraide and some beef jerky could be so much fun

Happy Mothers Day~

Friday, May 4, 2012 9:20 AM EST

another Friday, another treatment... IF they can get an IV in.... as of right now... 0-6

hail Mary full of grace~ help this needle go in place...

weight today, 115#

Godspeed

Thursday, April 19, 2012 6:50 AM EDT

a very long night of nausea..... ugggggggggg
getting some broken rest now....

Lord, please help the zofran to work....

Godspeed

Sunday, April 15, 2012 7:44 AM EDT

Friday went ok... 2 sticks, IV in... rather than a 3 or 4 hour process like it is in oz, our local hsp takes all day, literally to run the alb and lasix... it is ok because it beats driving to Pittsburgh every week...

this week G will see pain management.... I am praying they can find THIER way past the idea of potential addiction and direct themselves to find a soloution for the constant pain G is in... headache, not your run of the mill headache, but beat your head against the wall headaches, neck pain, shoulder pain, back pain, joint paint, feet pain, bone pain.. I would call it everywhere pain.. Sleep when it comes it such a blessing~~ I peak in and if G is sleeping, I am relieved....

G's spirit remains positive and his smile quick.... wow.... it is incredible....

Godspeed

Saturday, April 7, 2012 9:15 AM EST

it has been an eventful week! We moved to the new (leased) house and are getting settled in~~ there have been the typical issues, water leaks, internet issues, but for the most part, pretty smooth sailing~

our little Shelby has surgery yesterday to clear out her poor little eardrums, draining a bunch of fluid, placing tubes and ablating (lazer zapping) her adnoids... hopefully this will STOP the constant severe ear infections and high (105+) temps.... now... if we can only get her Momma feeling better... good greifies...

Gary had the last two weeks off from albumin and lasix but yesterday needed a treatment as he had gained 5 pounds in less than a week~ I know, does not sound like much but we MUST stay on top of this problem~ the good thing is, only two sticks yesterday to get the IV in... the bad news.. uhhhh after running the IV for 4 hours the nurse realized she had only opened the fluid line, not the albumin... duh.... (this is what happens when I am not there to be sure things are done correctly) anyway, his four hour treatment turned in to a 9 hour treatment... but... all is well...

keep Michelle and her sweet family in your prayers as Shelby recovers, Michelle hopefully gets over her bronchitis and now pink eye, Grady as he continues to recover from pink eye and respitory infection and Jason as he battles a cold~~ better pray for Ash too.. she too had to hit the DR's office this week for respitory issues...(this weather is not helping anyone)

keep my good friend Carol and her family in your prayers as well.. this week will bring the 10th year aniversary of the loss of her precious son Jack~ time in fact does not heal all wounds.... remember Michael as he faces Easter Sunday with his beloved Karen now residing in heaven with the Lord~ my heart is heavy as I think of so many we have lost... I know they fly free with the angels now... but the pain left behind on earth by their departure is difficult~~

Happy Easter to all~~ Celebrate everlating LIFE!
Gospeed

Saturday, March 24, 2012 1:12 PM eST

yesterday g was able to take a week off from his alb and lasix treatment... which was nice... however, the bleeding has returned, yesterday

so he ended up getting stuck anyway so we could determine if he was in need of a transfusion... so far his body is making enough new blood cells to keep up with what he is loosing

he is extrmely tired, in alot of pain, but resting on the couch curled up in a quilt....his checks are pink... hopefully they stay that way and the nausea quiets down

our little Shelby has a very bad double ear infection and bronchitits for the 7th time in 6 months.. she is on zithro and is going to need tubes put in her little ears.

Godspeed

Tuesday, March 13, 2012 5:21 AM EST

we have been home a week and had the first IV infusion treatment locally on Friday... 23 sticks to get an IV in... ugggg

hopefully this Friday is better~

Godspeed

Wednesday, February 29, 2012 6:46 AM EST

the rain is falling this morning.... maybe it is April.... nah... it is not that warm...

the plan is to send G home Friday after his treatment.... I am trying to reach his PCP at home so we can set his treatments up at our local hospital... I have talked to the hospital and they are on board, willing to do the treatments...Kareem will write the order; then, we need the local PCP to sign off so the hospital can run....BUT, cannot get him to call us back...will try again today...

if I do not hear back I will then try to attempt to have a hospitalist sign off on the order...hmmm.... in my mind, what difference does it make who signs off? Kareem / Costa will be calling the shots on med changes that will most certainly come...

the bigger picture is this.... noone has a clue what is causing the fluid overloads... G is picking up roughly 5-7 pounds per day.... once we go from treatments 3 times a week to treatements 1 time per week... will the treatment maintain a balance.... hmmm... probably not~

one step at a time.... in this world one must always be thinking ahead, to plan B, plan C, plan D....

for now..... prayerfully the IV insertion goes without too many sticks, and we make progress today...

Godspeed

Thursday, February 16, 2012 11:39 PM EST

today G weighed 120 pounds! AWESOME!!!!! or..... not so fast.......

he really weighs 107 or so.... the other 13 pounds or so is fluid... again...

so tomorrow bright and early, two runs of albumin, then lasix, arensp (again) On Monday we will do it all over again... for the next 4 weeks, albumin and lasix three times a week, blood work every week to keep a close eye on the lites...and arensp every week to make sure he keeps making red cells...

the biopsy (bx) was GREAT! pink, plump, and beautiful, no rejection, and the bleeding for what ever reason is correcting it's self... noone seems to know why this is happening (kinda like a few weeks ago when the kidney numbers went south, then suddenly started improving which does not happen either) For this we are so THANKFUL... and as long as this "fixing itself" we really don't care why.. we have a hands full doing battle with fluid...

at this point G's heart and lungs, as well as his kidneys have tolerated the surge of water without damage.... we need to get on top of the flood before the gates open...

we will be hangin in oz for a good while doing battle... hopefully G's already fragile veins will hold up.... hmmm

Please continue to pray for Michael... for Karis, for Maria, for Carissa... for G.. for all of them.... they are brave warriors beyond anything I can describe with words.... Godspeed

Tuesday, February 14, 2012 7:23 AM EST

at the hospital, early morning biopsy and a look see from the top to the bottom of G's system to see if we can identify what is causing G's bleeding....

G was doing ok when I left him just a few moments ago~ Georgetta is with him so he feels more comfortable...

thank you for your prayers....

UPDATE - G tolerated both scopes and the numerous biopsys well... he is working on waking up...everything looks good. pink, healthy, beautiful... very little bleeding during the procedure.. thankfully~ off for MORE blood work.... then, wait for pathology and see Kareem thursday to see what he feels he needs to do... hopefully just more med changes (?)

as I was sitting here with G post procedure, across the room a doc came to speak with a gentleman and his son... as if he were ordering a chocolate milk shake; we found a tumor, it is confined to the colon, it has not yet spread outside - you will need surgery, chemo and maybe radiation... you will need to call your dr if you do not hear from him, do you have any questions, have a nice day

first of all... pray for this man who sat there looking like a semi had just run him over and wished him Happy Valentines Day as it passed, and second of all, not that I was eavesdropping, but, here in recovery it is a BIG open room with no privacy at all.. but most importantly, it seems to me if a person, who by the way is not totally awake from anesthesia yet, has to be told oh, by the way you have cancer, should they not be told in a more gentle way, more privately by a Dr who can show concern, compassion, and truly be available if the guy actually DID have questions..... just my thoughts on this... as the Dr walked away the man looked at his son and asked... so, is he saying I have cancer?

pray today for those who do battle, pray for those who have been left behind by loved ones whose earthly battle has ended, pray for the docs who deliver the news.... that they can have compassion and realize, this is a life.... not a chocolate milk shake order

Godpseed

Saturday, February 11, 2012 2:11 PM EST

Though you have made me see troubles,
many and bitter, you will restore my life again;
from the depths of the earth you will again bring me up.
You will increase my honor and comfort me once more.
Psalm 71:20-21

this morning the snow was falling softly, quietly covering the trees and the earth as if to say, everything is ok

Everything is far from ok…

This morning our beloved Karen flew away on the arms of the angels…

Michael and KP were part of our family~ we shared so many days together at hotel transplant, in the hospital, in clinic, on 7 west… Karen had the absolute GREATEST smile you have ever seen and an amazing laugh~ her eyes were expressive of her beautiful heart…

KP was the daughter of a farmer and her lovely Mother who waited for her in Heaven; she was adventure, she was depth, she was colorful and made the world a much better place.. KP was most importantly a child of God. Today, she is home~

I fondly recall she and G going for a walk to Giant Eagle~ Michael had to go back to Chambersburg for a meeting; I was working and supposed to be in charge of the two juvenile delinquents… they could not make it back and had to be rescued by the hotel van… it was I who had to tell Michael what the two adventurers had done

Karen and G wanted to go to O’s in Oakland for hotdogs – NO WAY was I going to let that happen. G had never had a hot dog at that time so as a comprimise we headed to Giant Eagle to search out the yummiest hotdogs and all the trimmings for dinner that night.. when Michael arrived, I told him I hoped he was really hungry! We enjoyed our hotdog feast as G and KP slept on the couch…

I look out the window here at hotel transplant which so many of us have called home sweet away from home… and see the pool down there… I remember with a smile on my heart KP dashing from one end of the pool to the other ~ she was working on gaining her strength back and the water made her so light, so agile~ she swam like a dolphin, sleek and beautiful~

I do not have the words to describe the pain in our hearts, the intense feeling of loss that we feel..

So many faces, so many souls dance across my mind and through my heart. I remember right where we were, exactly what was happening at the moment when they flew away wearing their angel wings..

There have been so many; it never becomes easy to lose one who you love so much, one who is part of your family, one who holds such a place in your heart~

Please pray for Michael, for KP's dear Father, her brother and all of her family ~ for comfort and understanding, for strength as they prepare for the days ahead

For Michael as he approaches life with his best friend living with God~

Michael is the kindest person I have ever met. He cared for KP every day, encouraging her, comforting her; providing everything she needed right up to her last moment here on earth,. Michael honored KP and loved her in a way that I personally have never witnessed before…

If you would like to send Michael a card expressing your love~

Michael Spencer
1565 Spring Side Drive East
Chambersburg, Pa 17202

Godspeed

Service for Karen~
Saturday February 25th, 2012
2 pm
Falling Spring Presbyterian Church
221 N. Main Street
Chambersburg, PA 17201
Phone: (717) 264-5715

Monday, February 6, 2012 9:17 PM EST

dare I hope that tomorrow we will have an answer ~

what do we need to do to get this problem under control... some blood work to see how things are looking, then an eyeball from Kareem...

G actually looks pretty good, considering......

stay tuned....

Godspeed

Saturday, February 4, 2012 3:29 AM EST

3:30 am.... exhausted and cannot go to sleep.. WHY?????
I wish I were not an insomniac

later today we will be heading through the woods and over the three rivers... G is having some bleeding~ went to the local ER (we won't even touch on yesterday except to add the Granny did a back flip landing in the bathtub upside down - yes, amazingly, she is ok, not even a bruise thank God)

any way....the week I am sure is going to be interesting...

Godspeed (and if you are reading this at 3:30am...to you I wish goodnight) youy~

Thursday, January 26, 2012 10:16 AM CST

akin to a thief, sneaking in during the night.... a varmet prowling up to the door to wedge it's way in from the cold.... G started having fluid build up over the weekend... on Monday, as I touched his back I could feel the fluid~ his arms, legs, neck, face, hands, will pretty much everything was water logged.....

he had gained 13 pounds in just two days... so a quick call to oz, and a run for the border meant a treatment Tuesday morning... by Monday night he had gained 2 more pounds... hmmm.. another treatment needed

Wednesday another treatment and 6 hours of phos... Wed another treament, med changes

Thursday another treatment and an arensp injection, more med changes.... and hopefully we are on top of this again

I was thinking that the fluid was trying to sneak up on us...like we were not looking, not paying attention.... hmmm... NOT.... his heart suffered no damage, his lungs appear to be ok.... every fluid attack come wtih costs.....

we are blessed..... keep us in your prayers, keep Karen in your prayers.....

Godspeed

Sunday, January 8, 2012 12:50 AM CST

we have weathered the Christmas Holiday, New Years and are starting 2012 at home~

G is doing well... he is working on weaning his corteff yet again..... this week, 35 30 30 easy does it~

thus far, the winter has been mild and warm for the most part with the exception of one week! not put your shorts on and kick your shoes off and go play in the yard warm, but nice....

Chelsea had a MAJOR vet appt... it was to be a simple teeth cleaning which turned in to a very long, complex 4 tooth extraction... even our vet said, WOWZA, I did not see that one coming... she is recovering nicely and is felling much better today...

please continue to keep our dear transplant warrior in your prayers...so many are struggling

Godspeed

Tuesday, December 27, 2011 10:49 PM EST

we are so thankful that we could all gather at home for Christmas yesterday~~

G will have repeat blood work tomorrow am as he is growing exhausted yet again.... we cut the corteff to 35-35-30 for a test drive.... hmmm

as you pray for us as we know you do, please remember Karis... she is really having many complex issues and needs our expectant prayer

Godpseed

Wednesday, December 21, 2011 5:24 PM EST

today.... Toshie earned her angel wings.... G and I were with her and she was allowed to move on to her heavenly life under the care of our doggie Dr~~

our hearts are heavy, but full of peace....

We were blessed to have this little fur baby share her life with us...unconditional love and always loyal....

go in peace little Toshie..... we will always love you

“For the soul of every living thing is in the hand of God.”
Job 12:10

thank you Vi for sending this verse~ Vi was Toshies Momma before she came to us....

Godspeed

Thursday, December 8, 2011 12:37 AM EST

the good news is... a transfusion of a unit of blood, 2 runs of potassium, increase to corteff (50mg 3x per) and G is doing much better....

Godspeed

Tuesday, December 6, 2011 11:14 AM EST

as life would have it.... after calling hours tonight for Jason's Dad... I will be driving G back to Oz~~ his HH and platelets have dropped dangerously low~

Kareem reqeusted a stat repeat of blood work - which G just had pulled

we just have to get through this day~ then head to oz... get G to 7 West 7am for full work up.... then I will hustle back to Ohio for the funeral... then back to Pittsburgh...

take a breath.... clear your thoughts.... keep moving forward

Godspeed

Saturday, December 3, 2011 6:06 AM CST

“Trust in the Lord with all your heart,
And lean not on your own understanding;
In all your ways acknowledge him,
And he will make your paths straight.”
(Proverbs 3:5-6)
Last night Jason (my son in law) was at his Father’s side along with Michelle, Jason’s brother Tim, and their Mother as Jason’s Dad earned his angel wings~ Bill moved on in his journey on the farm where he was born and raised, raised his boys, and lived his entire life....

Dying as much as we try to understand it, and as impossible as that is: is part of our living~ It seems so simple... but indeed it is so complex.... over the past 7 years we have lost people, more that I care to begin to try to understand.... and the pain is well..... Indescribable...

Our comfort comes in knowing death is not our final destination... it is but a path we must take to reach our Father’s open arms... knowing this eases our suffering but does not remove the pain from our hearts... Please keep Jason, Michelle, Grady and Shelby, Tim and Sara, and Vickie Row in your prayers as they endure the painful days ahead and learning to live with a void....

God provides comfort beyond our earthly understanding...

Godspeed

Friday, November 18, 2011 4:51 AM EST

sometimes, its just the simple things....

For the first time, G was able to go Christmas shopping with his sister…

They had lunch out, laughed, chit chatted, and enjoyed a such a simple, every day thing… every day for most.. But not for all

G delighted in sharing his adventure of his day out with his sister…

She shared with me that he had the FK shakes as he did most of the day yesterday

Continue to pray for those who not only hope to make it until tomorrow, but long for and are fighting to have the simple, everyday things of life… Please pray for Debbie Harris who has done so much for Gary’s Journey through powerful prayers, and fundraising at this time…

We so appreciate your continued prayers as we move forward on med reduction and stabilization…

It is only through grace
Godspeed

Sunday, October 30, 2011 7:29 AM EST

3:1 To every thing there is a season, and a time to every purpose under the heavens

as fall hits the air and most of the leaves are on the ground... I realize we are not looking forward to winter...

Winter is a time of rest for Mother Earth in a way...but even during her rest, so much is going on... all the little roots are working on preperation for what will be thier much anticipated arrivel in spring...the trees that appear to be slumbering away standing tall in the cold winds are working on those tiny little buds that will pop out just when we need to see them the most...tulip and garlic bulbs are working to burst through the ground to announce... yes... yes you will make it until the warmer days of spring... all of this work happening under the earth unvisible to our eyes... covered in a blanket of snow which is not what it appears to be.... seemingly cold, but working as an insulator...

G continues to make progress.... progress in stability... with the cold days of Novemeber fast approaching we will make yet another med change... another 5mg cut to cortef once a day... doesn't sound like much I know ~ it is like a delicate dance to manipulate the odds in his favor... and I thought we did not know how to play poker...

we will wiat out November and see what the effect of this med change will be.... hopefully, all holds well and we continue to be home....

Please pray for strength, comfort and wisdom for those who are in hospitals or hanging out near them playing hands of thier own.... the battles are sometimes visible, like tall trees with sprouting buds... and sometimes, not so much... the battle lies under the cover of the fallen leaves and snow...

Godspeed

Monday, October 24, 2011 12:43 AM EST

all in God's perfect timing~~

we learned today that our home is sold... we will close on Thursday afternoon~~

our buyer is from California and would like us to stay on in the house until May 2012... this means there is no rush to make a move for which I am so thankful...

G continues to do well... his first day back at school was today! He has to retest in subjects such as math, algebra, language, reading and writing... he does not mind... if he can just stay stable he just has one year to go.... one day at a time...

Godspeed

Sunday, October 16, 2011 9:59 AM EST

when G was born.... he was named immediatly~ Gary....it is an old English name which means Spear Carrier~~

and that, G has been.... so many roads have been traveled and so many faces, souls, and personalities have graced us along the way~~

from all of us who love you so much Gman.... Happy Birthday!

Godspeed

Thursday, October 6, 2011 3:40 PM CDT

todays biopsy, the double wammer, endo and flexi~ looks GREAT, REALLY GREAT visually.....

we are cleared to head over the three rivers and through the woods... we will head out tomorrow (hve to wait for that pesky pathology rpt)

your prayers and thoughts, your messages are so, so appreciated.... you help to keep us going, standing upright, and moving forward in a positive frame....

Godspeed

God doesn't give you the people you want;
He gives you the people you NEED...to help you, to hurt you, to leave you, to love you And
to make you into the person you were meant to be

Monday, September 26, 2011 5:00 PM EST

so far... so good....

Dr Kareem is pleased with the progess.... bx again Wed... more blood work Thurs..... then more blood work on Monday, bx Wed, blood work Thurs.. and see Kareem...

if all is well.. we will finally head home... 2 more weeks to go~~

we are so thankful for God's mercy in our lives....

Godspeed

Friday, September 23, 2011 9:11 AM est

today is the first day of fall..... HAPPY FALL YA~ALL

bx went well Wednesday and the only alert was falling potassium ~ in this case, no news is good news :)

today a much needed day off.... then back at it....

Godspeed

L~

Wednesday, September 21, 2011 4:28 PM EST

another Wednesday, another biopsy.... todays bx looked good visually... now, we wait for pathology

it took nearly 3 hours to get an IV and anthesia was growing very frustrated but the good dr hung in and finaly got it.. G had a full pull blood work today but because he no longer has venous access... uh... the only place left was his foot... OUCH, SUPER OUCH

I said.. nope... feet, head and wrist are off limits.... the good dr said... we can do the full pull while he is sound asleep..... GREAT! so... one stick in the foot.. no good, another in the ankle.. GOT IT!! All 11 viles...

so G is sleeping now.... his potassium fell out to 2.5 which is a critical level so... 80 mg of K when bx was over, and another 80 tonight.. then you guessed it... another blood pull tomorrow am... youy~~

our little Shelby is doing better.. no temp today... thank you Lord....

Godspeed~~

L

Monday, September 19, 2011 11:39 PM EST

typically, when one hears of a case of a "mistake" in dosage, it is a patient who accidentally was overdosed in a medical setting.... the consequences can be dire~

in our case, today I learned that when getting his FK dose at the hospital G's 5mg dose was mistakenly given at .5
They quickly gave an addtional dose of 5 mg since the trace of FK in the blood was undetectable.....

we are in the dangerous and delicate process of cutting the FK to Mon, Wed, Fri only.... 5 mg per.... in an effort to improve the ongoing issues that we are dealing with...

Wed am is the next biopsy and all I can say is there better not be even the slightest hint of rejection....

late this afternoon our little Shelby was taken to the ED with a temp of 105
Shelby is a tiny little thing with a big smile who is always on the "go go"
Please pray for her, her Momma and Daddy, and all of us as we worry about what the cause of this fever is.... ears good, chest xr good, Lord.... protect our baby in Jesus name... Amen

Godspeed

Thursday, September 15, 2011 8:55 AM EST

the biopsy went well... the pics are awesome, and visually beautiful per the GI guy (was not Adam)

this morning finds us back at the hosp for evaluation for Alb / lasix... around 9 pounds of fluids.... irrrrrrrrr

thankful for a safe bx...

Godspeed

Wednesday, September 14, 2011 7:17 AM EST

it is very nerve wracking having a doc we do not know do the biopsy.... wonder what went through his mind when G asked that he the attending do his proceure, not the fellow... (G has been doing this for a while - most people would never know the diference)

protection, direction, guidance, and clarity.... thank you Lord for your mercy...

Godspeed

Monday, September 12, 2011 5:45 AM EST

the leaves are starting to change... the reds are revealing themselves first...intense, quiet, a hint of days to come...

today is the first day of the FK reduction project... I guess I should say it started over the weekend... G has not had FK since Friday...he will have it today.... today we will have a bili pull... Wed biopsy and full labs, Thurs, clinic and bili again... then we wait... until Monday... then bili, Wed biopsy and full labs, Thurs clinic and bili again....

throughout the process the eye must stay alert to change...subtle, slight.... even the most subtle change can be intense..... unlike the welcoming of fall and all the beauty it brings, we pray we see no hint of change...

Godspeed

Sunday, September 11, 2011 5:39 PM EST

9/11 words are not required to speak volumes of this day~

today finds us in oz~ settling in for yet another adventure in the journey... G's issues with fluid are improving, but still dogging him. His shortness of breath and chest pain continue~ his bili has increased so Kareem has decided the time has come to cut the FK (anti rejection medication) Starting tomorrow G will reduce his dosage days to Mon - Wed - Fri... he will have a biopsy once a week, bili pulled 2 times a week and full blood counts once a week... Hopefully this will make improvements to his oxygen intake, reduce his chest pain, reduce his bili, and perhaps most importantly, protect his kidney function...

I read Ashlee's blog today... she is in the air this weekend. She was 16 on this day 10 years ago and was at the Nasa Center in Cleveland..
we have kept in touch this weekend via quick ph calls and short text... arrived Baltimore, safe an sound - arrived Houston, safe and sound - arrived LA safe and sound etc etc .. these little notes filled with love have kept a little girls Momma from worry.... I decided to share her words with you....

May God Bless the families and others directly affected by the events of this day 10 years ago.... May they move forward with Peace, Hope, and Faith...

Godspeed

from Ashlee~~ aboard a flight somewhere over our Beautiful country...

"I didn't know anyone that perished on 9/11, and I don't even think I know anyone who knew anyone. But this was a day that forever affected our country, and the way we live, travel, and view things. I know everyone who perished was simply going to work, or going on a trip. I wanted to post a small tribute to the crew members of the 4 fated flights. Nearly 3,000 people perished, and among them were 35 airline crew members.

When I go to work, every flight is different, but basically has the same time line. Board the plane, close the door, do the safety demo, take off, make the announcements, make the coffee, set up the carts, call the cockpit, do the service. I unfortunately know exactly what my fellow flight attendants were doing when these tragic events occurred. I know they were sitting on their jump seats, discussing how beautiful the weather was that day, thank goodness for no delays, talking about their kids and pets, and how exciting it was to have school starting again. I know because I have these conversations every day. I know that when this all went down (pardon the uh, pun) they were absolutely scared out of their minds, and never thought something like this could happen to them.

This event forever changed my industry and changed what we are taught in training. Not only in training did I learn how to properly serve a meal on an international flight, making sure the plate was just so. I learned how to escape an attacker, beat them over the head with soda cans, harm them with broken wine bottles and scald them with near boiling water. I learned how to protect the pilots by sacrificing myself. I hope I never have to do these things.

When you think about today, think about those lost in the towers, and also think about the 35 crew members that made an effort to protect their passengers, and even though they lost the battle, they will always live on in the memories of those who follow in their footsteps.

Wednesday, August 24, 2011 7:49 AM EST

home this am.... yeah..... back on 31st

please pray for our dear friends...

Karen.. who BROKE her femor and had surgery to place a nice ouchy rod in there....

Valerie.. is in in the hosp doing battle with sudden onset kidney failure...

Karis whow is doing well~

Maria who once again waits....

Carissa as she battles forward....

Linda (Angies Momma) who's Father recently earned his angel wings and now flies with Angie.... Linda... our prayers are with you and your family~~

we in deed are blessed....

Godspeed

Happy Birthday Pea Poc!

Thursday, August 18, 2011 7:54 PM CDT

last night while driving I noticed the tippy top of tall maple with a hint of red....change is in the air..

change.... today G's HH was great as were his platelets.... which meant no painful arensp injection! 2 bags of spa and lasix..... perhaps like that glorious maple... change is in the air...

not a day goes by that those who we have loved and lost gently pass over our hearts... not a day goes by that we do not have the clear understanding of how blessed we are...

moving forward..... change?

Godspeed

Tuesday, August 16, 2011 6:10 AM EST

it has been some time since I last left a note here....thank you so much for allowing me time to get my sea legs, and understanding that doing battle is, well, tiring....

since my last notation which some refer to as blogging; I personally prefer Starhship Captains log..... we have been travelling every week to oz for albumin and lasix; potassium and phos as needed (however have learned a few weeks ago the trick of taking an extra phos the night prior to alb/las) and for arensp injections.... it has been a little hard to get things on a, schedule of sorts..... Orginially it seemed to make sense to head in on Wed - get treatment on Thurs, and head home on Friday... but that turned in to head in on Wed, have treatment Thurs, repeat blood work Fri, back to the hospital Mon for another treatment, to now, head in on Wed, treatment Thurs, G sleeps all day Fri, weekend off, back for treatment on Mon and head home Tuesday then back to oz the following Monday for treatment Tues and on and on ~~

at the start, the crew seemed convinced that G was in early renal failure... not good.... we made numerous calls and called in some big shots to help get us in to a nephrologist who agreed that we were probably seeing early renal failure.... noone seemed to want to have the where are we headed long term conversation and do we need to have a fistula installed now so that when we need dialysis it could be well healed and ready to rock~~ the questions that kept bothering me in all of these conversations were... 1. why is G not throwing protein? and why are we not seeing creatin levels rising?

well.. I heard everything from we may never see that becuase of his small body mass to finally...... I don't know.. (sometimes that is the best answer to hear)Thankfully Kareem returned from working overseas donating surgeries (he and Costa both do this frequently - I have no idea how they do this - they are sooooo busy)

the first thing out of Kareem's mouth was.... why did you go to the nephrologist??? (haha... becuase we had nothing better to do) I brought him up to date and asked him why if this is early renal failure, are we not seeing protein and creatin changes??? He agreed~~ we talked about lympodema, nope..... maybe his vessel walls are weak... maybe this is a lymphatic issue (uh, is that not lymphodema?)

anyway.... let's keep managing the fluid retention they way we are and see how it goes... (this means more research is needed by him and by me)

over the course of the summer we have decided that probably the culprit is the vessel walls being weak~~ we have upped the protein intake to help strengthen them (this takes time) and continue to manage the fluid retention through lasix and albumin and keep his red count from falling with arensp....we have not returned to the nephrologist

G's spirits are great, for that I am so thankful..... he is positive and feels like we are making progress which I think we are.. this week he is not a puffy as last... onward we travel..... thank you so much for checking in on us and leaving your encouraging notes from which we find great strength....

hugs to you as you read these words....Godspeed

Tuesday, May 31, 2011 3:03 PM EST

sometime tonight we will head back to oz~~

G's feet and legs from the knees to the toes are swollen,red and hot~~

through the woods and over the tree rivers we go~~

hugs

Godspeed

Tuesday, May 17, 2011 5:26 PM EST

the good news is... I located the Rx for the Arensp - not bad huh? only took me two weeks~~ now, we are in the is this drug really necessary stage? and the how do we go about getting it approved stage~~

dont get me started.... all I will say is.....just dont get me started~~

please continue to pray for G as he is suffering a horrible bladder infection and this is quite painful~ we are using 2 antibiotics (good ole Cipro and another one which escapes me at the moment) We are hopeful that this will kick it in the pants and the whole, we need a PICC and Vanco thing can be avoided.... time will tell..

also please remember Angies family~~ they are dealing with thier pain and warmly sharing the greatest Angie stories on the bridge.... it makes me laugh to read about the antics of Angies life~~ she was a warrior of this there is no doubt.... also please pray for Dan's (Pgh) family... Dan earned his angel wings yesterday and his wife Audra and thier young son are suffering this horrible loss... Dan was awaiting a liver.... every day, 17 people die waiting for thier miracle... I never met Dan but have seen his smile in photos... perhaps his message to the world will be.... don't wait.... we are hugging you Audra....and keeping your entire family in our prayers~~

hope you all stay warm... hard to believe last week is it was in teh 80's... now, it's March again~~

Godspeed

Monday, May 16, 2011 6:48 AM EST

HAPPY BIRTHDAY MICHELLE!!!!!!

few things furstrate me as much as stupidity and, well, lets just call it limited ability to see the big picture....

I am still struggling to obtain Arensp~~ so, over the weekend I had to call our incredible CVS pharmicist John and Mark to ask them to help me obtain carafate capsules... our local CVS filled with liquid without I will add calling to see if this is a problem... YES IT IS A PROBLEM IRRRRRRRRRRRRRRRRRRR - after speaking with them as CALMLY as possible, they advised they cannot get capsules.... WHAT????????????? John from Pittsburgh shipped the capsules to us yesterday..... SOMEONE CUT OFF MY FINGERS AND STOP ME~~~~~~~~~ he can get the Arensp too no problem.. however.... shipping..... hmmm.. has to stay cold..... yes yes I know this is possible but he has limited suppplies at his store~~ ok.. so on to that battle....again... today

yesterday found us in the ED - yes, AGAIN~~ this time.. Bladder infection - BIG TIME~ got the CiproRX ok.. but would they write for the Peridium?????? uh, no... want us to see our PCP today... ok, can anyone say WHAT??????????? so, trying to get appt with the PCP today and will try to call Pgh however today is clinic day so...... hmmm

I really hate starting the day out so AGRIVATED but.. it is what it is.. thank goodness I have the bridge as a release.... or, I may implode....

VERY IMPORTANT MESSAGE re: Maria...... Maria is awaiting her second transplant...(DEATILS TO COME) Her family (Dad had now joined Maria, Momma and Bella from Hawaii) are working very hard to not only fulfill Maria's dream of having a "premanent" home in Oz but to provide her a safe and healthy place to live and recover from the the gruling days to come - for now, allthough I will soon be posting deatils to - please log on to this site to vote for Maria at

http://my.hgtv.com/hgtvd/Living-Room/NAKED-SPACE/detail.esi?oid=23766295&cObjId=23766567

Please check back for details or check your in box..... Maria and her family are so deserving and really, really need this special gift to happen.... it takes a village~~

Godspeed

Sunday, May 8, 2011 9:30 PM EST

from the first time you see their little face, touch thier tiny hands, and caress thier little feet.... your heart is thiers, forever, unconditionally

Mothers Day~~ an early am call from Ash as she passed through Orlando, a mid morning call from Mich and Shelby... a quick ring from my brother, and a call from G to his So Georgia Momma.... I made an wonderful brunch for my own Momma and worked in the garden.... the annual beds are ready, fresh soil fills the pots...mental therapy~~ escape... an after noon nap, dinner with Mich and Jas, Shelby and Grady.... a card from Ash to her sister....

after dinner Grady climbed in to my lap, can you sing our song Nanny? sure... he laid his ear close to my lips and I sang quietly our own special version of you are my sunshine.....

as I held him there and watched as Shelby in her own sweet little way was asking for more apple juice.... I was thinking of the many amazing Moms I have met through the years of Garys Journey .... I mean, incredible, amazing women who astounded me at the time, and still do today.... one such Mother had a little boy who shared a unit room with G~~ they strangely enough shard the same day of birth.... this little guy had dark brown hair, and eyes that matched... his Mother was young and it was her first little boy~~ he was born with 1/2 of his brain.... he had somehow manged to see 7 months of life.... we talked in to the wee hours of the morning...for what seemed like nights on end... in reality, we were sharing the end of the nights of his little life... she said, all I want to do is be here to hold him as he flies away.... God granted her the desire of a Mothers heart....it was one of the most truly sweetest, moving moments I have ever personally witnessed.....

Mothers don't have an end to thier hearts.... Grady pinched his little leg tonight at dinner getting out of his chair to help Momma get some salad....as I watched Michelle hold him close, he laying his head on her shoulder, she stroking his hair and giving him little kisses... my heart was filled with such love and such pride in my own little girl and the amazing Mom that she is.....Gary said to me.. she is so good with them.. she is such a great Mom... yes, yes she is.....

Happy Mothers Day~~

Linda.. if you stop by here... you are especially on our hearts today... we love you and continue to pray for comfort beyond understanding~~

Godspeed

Friday, May 6, 2011 6:00 AM EST

it is always amazing to me how the most simple thing becomes a major undertaking~

G is now past due for his arensp for this week.... CVS can order it but cannot recieve it to inventory for me to come and pick up - "too expensive" - (uh, like it is needed now so like uh, how long will it be on your inventory?)

the supplier is not accustomed to drop shipping..... so there is the quandry.... funny, I thought it was going to be about MONEY.... hmmmm...

hopefully today I can convince the pharmacy to allow the shipment to come to them (doubtful) and let me come in RIGHT AWAY to pick it up.. OR, convince the supplier that I am really going to inject G with it and not sell it to the owner of potential Kentucky Derby winning horse....

it never, after all the mountains we have crossed and valleys we have forged through, ceases to amaze me....

Lord let me have patience~~

Godspeed

Friday, April 29, 2011 7:34 PM EST

today, just a bit past noon our dear friend Angie earned her angel wings.... Angie has fought a battle that words simply cannot describe... a battle that she did not loose, but rather chose to claim victory over, and that she did....

Matthew 19:14 Let the children come to me, do not stop them, because the Kingdom of Heaven belongs to those such as these

Angie loved animals, of all kinds, shapes, sizes and they loved her....she was a gentle soul with a quiet voice, a little tiny frame~ but she was an army....

Please keep Linda and Merril, Angies brothers, and her extended family in your prayers as they endure the coming days....ask that God's peace beyond our understanding surround them, comfort them and give them strength...

if you would like to leave a message for them on the bridge please log on to:

http://www.caringbridge.org/visit/angiemitchell

Godspeed~~

Wednesday, April 27, 2011 9:17 PM EST

some welcome news... last nights efforts and arguing appear to be paying off....

today, HH up to 9.9/28.1 and platelets up to 113

we are heading in the right direction but will keep those hotel reservations just in case.... since this is PITT and Carnegie Mellon graduation weekend, hotel rooms are hard to come by in oz~~ if tomorrow we are still ok, will move them out to Monday...

our local PCP is still concerned about low potassium combined wtih the high dose G is on (160mg per day) his potassium today was 3.3 - I just didn't have the heart to tell him that was actually, well, not so bad for G - keep in mind, it does not have to be perfect it just has to be okay~~

please keep sweet Angie in your prayers... she is just fighting her little heart out... Carissa (g's surgical twin), Karis, and Maria are all in need of our prayers...

the road is long....and very bumpy.....tonight G and I watched as horrible weather again headed across the beautiful south devastating Tuscalosa and Birmingham~~ we held our breath as the storms took aim for our beloved Georgia~ it was headed towards Atlanta~~ we were hoping none of our So Georgia family was up in that neck of the woods... Sherry.. thnxxx so much for your note~ we know you are okay~~

we will see what tomorrow brings.... for now, sweet dreams... Godspeed

Wednesday, April 27, 2011 11:21 AM EST

as I have said many times over,it is like riding on a roller coaster without any rails~~ up, down, winding, spinning, never knowing which direction you are goin next~~

today we wait (we are pretty good at this) for lab results~~ on the 25th (rebirthday) G's HH fell to 8/25 and his platlets fell to 68~~ uh oh..... can anyone guess who the culprit may be?????????

you win the PRIZE if you guessed hemolyzation! YIPEEEEEEEEE for you!!!!!!!!

after speaking with our coordinator, and she with Kareem we opted for an immediate injection of aranesp~~ so, our local pharmacy does not stock this because it is too expensive~ after placing the order for it they called me to say they cannot even recieve it in to inventory! ouch.... so, the manufacturer will drop ship to me... so that left us wtih how do we get the drug ToDAY (we are trying to turn this around out of the hospital) Michelle had a birlliant idea~ call the hospital pharmacy! Well.. bingo, they had it in stock~~ now... getting an order for it, another story~~ after few phone calls and faxes, (thank you so much Barb for all your help) our local PCP who has never prescribed it before wrote the rx~~ after picking it up, a quick call to the nurse coordinator at our local hospital who was apparently having a bad day which I only made worse announced, well I have to see if we have it - OH YOU HAVE IT, already checked... OH... WELL< HAVE TO SEE IF WE CAN "FIT" him in~~ OH,,,, you will fit him in.. we need that injection tonight~ well... I will call you back...

hmm.. now what is that hospital administrators name again, let me find that phone number... oh they will FIT him in.. you old #@#@#@#@#@#@@@%@% (better pray for some forgiveness)

with a ring of the phone, it was determined they could FIT G in at 6p~~ the nurse on 5 could not have been nicer~~ and after all this work, it took less than 30 seconds to administer the drug.... boy, I was tired and a little bit grumpy too.... anyway...

blood work repeated this am.. and we wait..... hopefully we are headed back up, and a trip through the woods and over the three rivers will be averted.. but uh... I am not all that hopeful..... G is developing a tell tale rash on his arms and elbows... looks like poisen oak blisters.. but uh, it's not poisen oak.....

Godspeed

Monday, April 25, 2011 11:56 AM EST

"To get something you never had, you have to do something you never did.” ~Unknown

Today G is 6 years out! I can hardly believe my own words.... our hearts are filled with overwhelming thankfulness, and we are deeply humbled....

we are currently sitting at the ED with chest pain and shortness of breath but this could be related to recent med changes.....

please continue to pray for all the brave warriors who wait, for the families who will face the unfaceable, and for those who continue to fight thier way back

Godspeed

Friday, April 22, 2011 4:02 PM EST

Good Friday~ Easter~~

it is hard to believe but on Monday, Gary will be 6 years post transplant~ our good friend Linda will be 6 yrs post cancer~~ they share the same re birthday

Please say a special prayer this weekend for Angie... she is very sick and needs our prayers... please pray for her Momma Linda as well..... healing, comfort, rest....
also pray for Karis, Pauline, and those who continue to wait and the brave families who have made the difficult decesion to give these warriors a chance....

keep our little Shelby in your prayers - she is having yet another possible asthma attack~~

may God bless in a mighty way~~

Godspeed

Wednesday, April 20, 2011 4:43 PM EST

the beautiful news~~ the biopsy (top and bottom) is perfect~~

so, with Kareems listing of med changes in hand, over the three rivers, and through the woods we go~~

Godspeed

(I am going to try to scan the photos from the biopsy - they show a perfect, perfect picture of a graft)

Monday, April 18, 2011 5:03 PM EST

today a visit with Kareem, fresh back from Egypt~~

the FK seems to be leveling out, time will tell....the biopsy is a go tomorrow - Kareem reminded G to tell Adam, BE CAREFUL!

if the biopsy is OK, and G's stays solid (meaning no post biopsy bleeding) we can go home Wed.... Kareem knows G is in good hands..... we will have blood pulls there, and keep a close, close eye on him..... Kareem feels the corteff is causing his upper r quad pain (he is still on a very high dose) So over the next three months, we will work on a gradual, slow process to wean him down ever so slightly~~

today G and Karis hung in clinic~ Karis is working hard and looks lovely... she and Momma will soon be moving in to another house here in oz.... I recall the many times that we moved locations here in oz....

keep G in your prayers, Keep Adam in your prayers~~

Godspeed

Saturday, April 16, 2011 1:43 AM EST

Sometimes, in the most common of places, something extraordinary happens~

March 1, 1963, the very first human liver transplant was attempted… the brave patient was a three year old little boy named Bennie Solisborn. Little Bennie sadly, did not survive the surgery. The surgeon was widely criticized for this failure, but in May 1964, tried again… this time, an older patient, a man with liver cancer ~ he survived three weeks~

Later in the 60’s, liver transplant was attempted again – only on infants and young children~ and by the 70’s survival rates were at 40% - not so great you say?

Over time, experiments were done transplanting baboon livers in to humans~ it was quite controversial
The man behind all of this was the son of a newspaper man in Iowa ~ Thomas Starzl

Dr Starzl came in Pittsburgh in 1981 ~ Gary was 4 years old and had already endured 17 major gastrointestinal surgeries and nearly died numerous times. He had never eaten a bite of food. Dr Starzl put transplants in the forefront and led the way pioneering efforts that have led us to where we are today. Over the course of the last 5 years I personally have read everything I can get my hands on written by Dr Starzl~ I have penned many letters to him just wanting to thank him for his sacrifice, hard work, vision and determination ~~ I never sent any of them…

Tonight, G and I ran to Giant Eagle to grab some supplies for the weekend ahead at hotel tz….. as we entered the foyer of the grocery, I saw him there, looking for a cart… in a blue suit and tan rain coat, his hair gray and a kind face that has seen a lot of years, a lot of long hours in the OR, and endured a lot of frustration and according to his own writing, heart break following early failures…. Are you Dr Starzl I asked? ~ Yes, Yes I am….. I introduced myself, and introduced G~ I told him about G’s transplant, I thanked him for his work over so many years~ he and G chatted, and he wrapped his arms around Gary and said you are a miracle, your life is a success of amazing proportions…

We chatted about Dr Kareem and all he does - much of which many never hear about…. Like now for example, he has been in Egypt, providing surgery to those injured in the uprising there~ we talked about Dr Costa~ how gifted he is……

I could not hardly believe myself… here we are in the entry way of Giant Eagle, talking with, just chatting with, Dr Starzl… his eyes lit up when he heard that G still has his native spleen – I am very interested to hear about this he said…. He guessed G’s weight and height, and was very, very close… I wonder what the busy shoppers must have thought as we chatted about livers and spleens, intestines and stomachs…

He was so kind, such a gentle person, and his compassion was all over his face… deep in his eyes I could see how difficult the years had been just behind the spark as he talked of being in the OR…. I have personally wanted to meet him, just to say, thank you….. and this evening in Giant Eagle, such a common, every day place~ we met an extraordinary man…

It is 1 a and we are in the ED – G is having upper right quad pain that just won’t relent….. so… we need to be sure his liver is ok, his panc is ok…. And get the pain under control…

Godspeed

Monday, April 11, 2011 8:53 PM EST

ok.... so maybe I spoke too soon...... Sunday I brought G back to oz~~ (but still, first time back since Aug 2010)

over the last month, G has been very tired..... not so unusual~~ over the last two weeks, his hands have started shaking, in our world known as the FK shakes...which he has not done since the early months following his transplant...Thursday and Friday I had to wake him for his meds.... Saturday, he seemed to not be processing information correctly, not being mentally sharp.... ok... something is going on....subtle things, but something is not right here~~ I was wondering if his FK levels were too high..... a potential serious issue~~

last night, after a bath, a hand full of G's hair just fell out~ it was a bit shocking! Today we met with Costa~ G's blood levels looked GREAT! except for his FK - his 24 hour trough was 14.3 YIKES- TWICE what he should be! FK is a miracle drug in the world of transplant, but toxic and potentially dangerously harmful if the levels become too high...

the plan.. cut the FK dose..... so tomorrow 5mg rather than 9 then more blood work Wednesday~~ 5 mg 5mg Thursday and more blood work Friday~~ the trick, to drop his levels without tossing him in to rejection.... carefully, ever so carefully...

we had a lovely talk with Costa, about his Mother.... it was apparent how much he loves her, and perhaps more so, how much he misses her..... we met the visiting scholar who is here until June... he was quite interested in hearing the journey of G's life

over the next few days, we move forward to fix the problems that are apparently being caused by the too high levels of FK - a possible CT to take a look at the abdomen (high right side pain) to be sure all is well in there... then of course, once we drop the FK levels down, the dreaded biopsy to be sure we have not invited rejection....

please pray for us as we journey forward~~ Godspeed

Friday, April 8, 2011 4p EST

for the first time in well, I have no idea how long, (I am talking years here) G has managed to stay out of the hospital for the winter! We have had many daily trips to our local hosp for iv antibiotics, fluids, this that and the other thing.... but... WOWZA

the other night, our second trip this week to the ED for migraine, while G was sleeping under all the heated blankets getting a run of caffiene to try to quiet his pounding head, the nurse asked me how many times a year we are in the ED....hmm... well, that just depends on how G is.... like, kidney stones, migraines, infections... maybe uh.... 30 or so....

WOW was her reply (it was her first experience with us) So over the course of his life, how many IV's would you guess he has had.... ok gf, you are kidding me right???

a simple reply~~ over 33 years, I have observed, researched, learned, argued, changed dressings, ran wound vacs, IV's, changed out lines, tubes, drains, wrapped bleeding arms and legs in soft towels, suctioned, injected, administered drugs I am sure you have never heard of, given IV narcotics, antifungal, anti virals, anti biotics, pain meds, tube feeds, TPN, assisted the closure of a bleeing vessal in a gut, assited in the placement of femoral lines and PICCS, observed endos, coloys.... uh.. I am probably missing something somewhere... so no, I have no idea how many IV's he has had... maybe more than 2 or 3 thousand...

she just looked at me..... may I ask, why you do it, how you do it.... realizing, she really wanted to know an knowing she could not possibly really get it~~ becuse of hope, because of spirit, G's spirit, becuase I don't know how not to do it...

These guys get so sick, so quick, it is not like a normal, really serious life threatening sick~ is it so much worse.... but, they fight their way through it, they claw their way back, and they press forward not looking back to where it was they just left.....sometimes, their battle to make it back does not meet wtih earlty success, and sadly, they earn thier well deserved angel wings are rewarded with their heavenly body which is perfect, without any flaws; and we who are left behind, must wear the heartbreak~

we are among the lucky ones... through it all, we have been and continue to be so blessed

G eats now, he sometimes can sleep through the night which by the way he does not in his bed, not a chair! his body does not leak any more (well, for the most part) He talks about tomorrow, about next weekend, about next month, about next year~~ he endures the pain of failing bones, of joints with no cushions with little if any complaint~that is why I do it... for hope

the words written here are not to make someond sad or to feel sorry, but to offer hope.... life is a gift, just unwrap and start living

please continue to keep Angie in your prayers~ she is in a fierce battle~~our incredible donor family and those who still wait....

Godspeed

Wednesday, March 30, 2011 6 am EST

G is doing better~~ his arm is healing nicely and hopefully no IV' will be needed in the near future~~

the migraines, well.. a day to day journey~~ He has had the FK shakes for the last two weeks so a blood pull is needed to check his levels but over all - felling well...

Please keep dear Angie in your prayers.... she is really having a tough way to go.... our little Shelby has been quite ill the last two weeks~~ the doc is concerned that she may be asthmatic~~ hmmm....

until next note.... Godspeed

Friday, February 11, 2011 5:48 PM EST

thankfully, with steroids and therapy, the arm is showing signs of improvement.... one day at at time~

we have all stood witness over the past few days, weeks, as the people of Egypt have taken thier country back... may they be blessed with Peace, and most importantly, freedom....

Godspeed

Sunday, February 6, 2011 5:14 PM EST

thankfully, G is home for the Super Bowl and not in the hospital~~ we are doing battle with an inflimated vein in G's left arm, otherwise known as Phlebitis~ the dopler was clear, so they say, prayfully they knew what they were looking at... and we are doing a 7 day intensive hit of prednisone.... hopefully, it works....

any way.... our pizza is ordered, the nachos are ready, and in honor of Pittsburgh, we will have perogies at half time (that is, uh, if we have any tummy room, hmmmm.....)

it is a long story, and hard to explain, but the Steelers mean so much to so many transplant pts who equalivilate their personal struggle to that which plays out in football on the grid iron.... sports, racing in particular, touches deep~~ if they only knew...

so GO STEELERS!!!!!

Godspeed

Monday, January 31, 2011 109:02 PM EST

another day, another headache, another visit to the PCP, another night of treatment....

Almighty God, who gives strength to the weak and upholds those who might fall, give me courage to do what is right, for those that trust in you have no need to fear.

Make me brave to face any danger which may now threaten me.

Give me the help that you have promised to those who ask it, that I may overcome my fears and go bravely forward.

Fill me with courage, that nothing which is my duty to do, may be too hard for me. Let me put my trust in your power and goodness.

There is a major, so the weather guys say, winter storm headed for us~ ICE (yikes) The drive has been salted just in case we have to get the car out of the garage which means, (backing up the hill) and we are blessed to have plenty of food....prayerfully, the ice will not knock out the power...

G is resting on the couch.... pain is now at a 4.... pain, pain go away.... don't bother to come back on another day

sweet dreams... and if you live above the mason dixon... be careful out there

Godspeed

Thursday, January 27, 2011 12:40 PM EST

Uncommon faith..... I know a little about uncommon faith.... it has allowed us to arrive where we are today, and move on to wherever we will be tomorrow...

last Friday, G finished up week number 4 of Vanco, and we pulled his PICC.... Monday, we spent 4 hours getting a peripheral line in to try to get the ensuing, ever present migraine under control~~ it raged, despite our attempts, 2 mg of dilaudid, with a 50 Benadryl push and zofran... Tues drug on like a dark tunnel of pain - by Wednesday, I, (not G) could not take any more~ I applied a fentnyal patch, 25mg to beg for some relief from the unrelenting migraine pain... Monday G weighed 111 pounds.... by Thursday, 102

a call to oz... hey uh, Dr Neurologist.. uh, this new medicine, which has taken us 6 weeks to get up to the 1600mg per day dose, is well, uh making the migraines worse... we need to find another path, sooner than later~~ well.. G is going to have to tough it out for at least 6 months came the reply~~ No... No... I don't think so..... look doc.... G has toughed it out long enough....so no offense, but uh... I need to find another route....

a call to our PCP, thank God for him.... oh and by the way, he had no appts because our entire county has the creeping crud which has also filled every bed in our local hospital.... but... bring G in and wait... (this has become our most recent hang out, the waiting room of our PCP) I did some research on the internet and had a plan in mind to lay on him.... we sat there waiting, G laying against my shoulder with his eyes covered.... and for some strange reason I was thinking of Dr Street.... hmmm.... how he cared for Kev.... we met with Dr Carol~ we talked, and I told him I called the neurologist and what he said.... Doc... G needs some relief... he is losing weight, he is not sleeping, his eyes are black.. can we try Demerol with a Benadryl chaser, then f/u with dilaudid if that does not break through this? THIS has been a headache that has been here so long, I personally cannot remember when it started~~ he agreed.... G's precious organs would not suffer, and, it was worth a shot~~ home we headed for a dose of 500 mg of depacote-scrap the Neurotin which took us 6 weeks to get to strength on (sorry Dr Neuro) and wait for the hospital to call with a bed.... 8 p, a bed in open in cardiac... we will take it~~ to my surprise, Dr Carol was hanging out at the hospital... just so he would be there, just in case.....

guess what? it worked... uncommon faith~~ by 9 p, the doc felt ok to leave.... we hung out getting the last dose at 11p, than another hour to be sure all is well.... and home.... as we drove home, the snow was falling... quiet seemed to surround us.... quiet...calm.... the migraine now at a 5.... that I can handle Momma.....

G is tucked in bed... and hopefully, prayerfully, will sleep.... it has been a long week that followed a long week that came after a long week, just after a very long month.... uncommon faith.... I saw it in the eyes of a doctor who I would not allow to have second thoughts.... no phone calls to oz, no approval from whoever.... just a simple PCP, a nurse who started out working in a vet clinic who said if you can get an iv in a tiny kitten, you can get one in anything (and by golly she did), a laptop computer, some research, a PDR, and the willingness to try to bring some rest to G's battle with this nightmare of pain and... Uncommon faith....

tomorrow is another day~~ let us be an fiddle of uncommon faith~~ sweet dreams

Godspeed

Wednesday, January 5, 2011 11:27 PM EST

I have decided, it is time for spring.... enough of this crappy cold weather, snow, ice, bronchitis, sinus infections, coughing, IRRRRRRRRRRRRRRRRRRRRRRRRRRR

I HATE WINTER!!!!!!!!!!!!!!!!!

ok.... now that I am done YELLING about the cold.... G continues on his daily vanco... so far, so good... Lord please keep that line safe..... the battle this week has been blood pressure... YIKES 198/114 WHAT?????????? so after a very frustrating three days of trying to get some direction from the gang in oz, talking to, ok well, maybe TELLING OFF a cordinator who I have never heard of, who could really use some lessons in pt management, OH YEAH, gave her that... anyway... after our PCP was determined to be SAFE by our tz team to make a decesion regaring blood pressure treatment (OK.... THIS DID TAKE MY BREATH AWAY AND SPIKE MY OWN BP) a new presctiption was delivered....

ok, call me what you will, I COULD NOT bring myself to allow the new drug to be given without Kareem or Costa giving thier blessing~~ WHICH did NOT HAPPEN!!!!!!!!!!!

turns out, a rare side effect could prove harmful to G, so.... no new drug.... Kareem suggested two other options so tomorrow, another call to our PCP... or maybe I better visit in person now that I get to say, oh, uh... sorry you are over ruled after being determined to be compentant - Doc.. we love you and thank God for you, your efforts and your never ending patience - without you here, we could not be at home......

The main thing is to keep G as safe as possible... for tonight, BP back up to 158/102 so another dose of lopressor... the line looks ok, even after G's fall today in the basement....

Michelle has been off work all week... bronchitis, monster bronchitis according to Dr Brent, and yes, that is an official dx... Lord please help my baby get feeling better...

keep Ang in your prayers.. you guessed it, back in oz...

Godspeed

Saturday, December 25, 2010 3:18 PM EST

unto you this day is born a child, in the city of David, and he shall be called Emanuel, Saviour~~

Merry Day before Christmas! Yes today is the 25th but of course we all know this is the day that over the course of history, people have traditionally celebrated the birth of Jesus. His real birthdate probably would not have been in December... anyway, we have moved our Christmas celebration to tomorrow to accomidate Ashlee's flight schedule, allow Michelle's little ones to have thier Christmas Day at home and hopefully by tomorrow I will be feeling better.

Gary has come down with yet another very bad sinus infection and this time it brought along a friend who has taken up residence in G's lungs... so, because our local hospital will not allow me to run IV Vanco at home, we are going there every day for treatment - hopefully this works, but over the next few days if things do not start to show sign of improving, it will mean, through the woods and over the three rivers we shall go... Gary feels horrible, looks horrible, and well.. he is just miseralbe....

But... we march on.... G knows we are trying our best to stay home... time will tell..

today he called Sherry, his South Georgia Momma... oh how we miss her....

last night at midnight I was watching a Christmas canlelight service and the pastor mentioned that we should stop praying for God to fix our broken hearts, and start praying about the things that are breaking God's heart... This is what we can do for Him, for Christmas, for every day

please continue to pray for Angie who is finally home for Christmas... remember all of our transplant extended family... there are so many who are struggling right now..

Enjoy your Christmas, your family and thank God for your children who are healthy~~

Godspeed

Monday, December 13, 2010 5:59 AM EST

SNOW, SNOW everywhere! the song, I'm dreaming of a white Christmas has a whole new meaning this year~~

we will head to oz Wed evening to see yet another neurologist - this one is the Chief of the Headache Division at Shadyside Hospital - yes, Virginia, there really is a Headache Division...... it takes months to get an appointment with him, and thank you so small miracles, we were able to get G in.....

Christmas is coming ever so quick and by the way just for trivia... this is the third year in a row that we have headed for Oz in the days before Christmas - Anige is still in Oz and still in the hospital fighting many issues... please pray for this brave warrior and her family~ Matisse at long last recieved her life saving transplant minus the stomach - she is doing well so far - please keep her in your prayers - also pray for Karis... she has been battling pnemonia yet again and has been quite ill... Maria still needs our prayers....

Christmas, snow..... all the magic that comes with it.... please keep in mind, there are those who will not be at home this year, and will continue to fight the fight..... keep them in your prayers...

Godspeed

Wednesday, November 24, 2010 5:25 PM EST

A Prayer By Robert Louis Stevenson

We thank Thee for this place in which we dwell;
For the love that unites us.
For the peace accorded us this day
For the hope with which we expect the morrow;
For the health, the work, the food and
the bright skies that make our lives delightful.
For our friends in all parts of the earth.
and our friendly helpers in this foreign isle.
Give us courage and gaiety and the quiet mind.
Spare to us our friends,
Soften us to our enemies
Bless us, if it may be, in all our innocent endeavors.
If it may not, give us strength to encounter that which is to come.
that we be brave in peril, constant in tribulation, temperate in wrath
and in all changes of fortune, and down to the gates of death,loyal and loving one to another.

tis Thankgiving.... give thanks...

Godspeed

Monday, November 8, 2010 11:50 PM EST

today found us at the dr.... G has just finished 10 days of IV Vanco, and his line has been pulled... but today, G was not the patient.... Tosha was~

we went to the vet prepared to hear that we needed to help Tosha find her angel wings... a talk with the vet, a very extensive exam, and some blood work later~ the news was better than expected..... her hearing is pretty much gone - no big deal.... she is scared of thunder storms anyway and now has the luxury of not hearing them...her little brown eyes that seem to look right to your soul no longer see clearly ~ the told us it is a little like looking though wax paper... her heart has a murmer but not unusual for a sheltie who is 13 years old...

we left with a strong dose of antibiotics for the next 7 days.. then Tosha will have surgery to remove what is left of her little teeth... her dr feels this will solve her issues, well, the ones that can be solved, and that her health will improve....

G is now the caretaker of one of his care givers...he understands Tosha's increased anxiety.... it comes with the territory he says... with an added nite light and a couple of blankets placed in her favorite spots, Tosha should recover and do well.... a good friend, a trusting soul, and a huge heart all wrapped up in a mound of fur.....

Godspeed

Friday, October 15, 2010 5:47 AM EST

tomorrow is my birthday~ my real birthday, when I was born... I will be 33.... that is hard to believe allthough sometimes I feel like i am 133! my old body has been through alot.

so I have been thinking about my Mom.... over the years of my life everything she has done, everything she has sacrificed, everything she has fought for, all the times she has not given up, the nights - and there have been so many that I cannot start to count them, that she has rested, not slept, in a chair with her head laying on my hospital bed, holding my hand. Plans she has changed and how her life has been different over the years as she did everything that was needed to support me. I have thought about my sisters. How much thier life has been touched by illness, not thiers, mine. How they have given up Mom and time that they would have spent with her so she could be with me when I needed her the most.

If you dont know my Mom, I wish you did. My feelings about my re birthday is hard to describe and I think about the Mom of my donor. How much she has given me. Like my Mom, she gave me my life.

I think about Kevin's Mom, my Georgia Mom....I think about Kevin. I thnk about Angie's Mom, Maria's Mom, Dr Kareems Mom, and Georgetta my Pittsburgh Mom.

Happy Birthday Mom... without you, I would not be here today. I love you.

G
please pray for Angie - she is back in Pittsburgh and having so many problems

Friday, September 24, 2010 7:05 PM EST

you just have to embrace every moment.... keeping life in priority.... the things that matter most...

G is back in school, the chest pain is better... we don't know why, and I guess we don't care.... the main issue we have at the moment is potassium... it just keeps falling...

more frequent blood work, and more changing of the meds... but~~ it's ok.... we can handle that...

please continue to Angie in your prayers as well as her dear Momma... Karis, Carisa, Maria.... they are all struggling... but, strong.....Greg... is doing amazing and off FK WOWZA... he is one brave dude.....

Karen looks amazing and thankfully is doing well....

until next time... hugs..

Godspeed

Sunday, August 15, 2010 8:00 pm EST

ahhhh..... finally sitting for a few minutes so decided to bring the bridge up to speed...

the CT Angio with 3D reconstruction resulted in us knowing that G's Kareem built arterial system is working beautifully! Great blood supply, no sign of stricture, aneurysm, the pump is working beautifully, the shunt is working beautifully - a work of art~~

this of course brought great relief, because a problem in that system would have meant major, major surgery.... not good.... we are so thankful for this news...

so that leaves us with, what in the world is causing G's chest pain, and shortness of breath....

Kareem's theory, and, he is usually right on the money~~

sometimes, even though the biopsy is fine, there can be "something" going on, something we cannot see on the microscope.... so.... for the next two weeks we are increasing the prograf to 9, and the steroids to 35 TID

we came home for these two weeks... hopefully everything stays quiet..... then will go back for Kareem to have a look see....

for now.... we wait..... and remain faithful....

keep Angie in your prayers as perpetrations are being made to bring her home..... she will require allot of care..... continue to lift her and her Momma...

Godspeed

L

Wednesday, August 11, 2010 1:51 pm EST

I can hear the voices through the walls... breath in.. hold your breath... the humm of the CT.... hmmmmmmmmm hmmmmmm

the radiologist will look at your pictures.... sit tight..... so, this will be like 3000 pictures..... so.... we wait....

as I sit here in this pale, yellow faded room.... I am again amazed at how blessed we are... I make a mental note to elaborate on this in the book......

well... g is done... so we are headed back to hotel transplant to wait for the answer...

Godspeed

Monday, August 9, 2010 11:16 PM EST

it is a mystery~ that is the offical diagnosis... mystery~

hmmm.... over the last week and a half, Gary has undergone more CT studies than most people will have thier entire lives... Kareem determined today that we have spent enough money in the last week trying to find out what is causing G's shortness of breath and chest pain to build a new person... CT w/o contrast, CT w contrast, MRI with, MRI without, plain films, historical review (our sincere appreciation to all the radiologist who have worked so hard to look at every single study G has had over the past 5 years comparing even the slightest differences), repeat CT w and w/o~~ doplar ultra sound, ultra sound, echos, heart studies, and 64 slice pictures.... and still, no answers.....not even a hint.....

today we talked about the arotic graft, the vena cava shunt, scar tissue, reconstruction, and 3D reconstruction..... so, we are waiting and hoping that tomorrow we can get on the schedule for a CT Angio w IV contrast, no oral, of the infrarenal aortagraf, with check of patancy of the portal arotic shunt and 3D reconstruction~~

what the HECK does that mean???? contrast will be admiistered via a small IV - then yet another CT however this one in conjunction with an angio study to look at G's arterio system (orginal equipment and Kareem-Costa built) They will be searching for any sign of aneyurism, decrease of capacity, obstruction, damage, or anything else that may appear suspect (since we have no idea what we are looking for).....once all of the pictures / movies are completed, they will use a computer to rebuild an exact 3D model of G's complex aorta, arotic graft, vena cava shunt and entrance to the secondary circulatory system....

hmmm.. hope I can see copies of that baby..... wowza!

we know something is wrong, something is not right... but, what is it???? a mystery.....

I am confident that no matter what it takes, the incredible radiologist will find the culpret, and Kareem will devise a plan of repair, or, well, reconstruction or... well, hmmmm

for now.... we wait, and cannot leave oz in order to keep G as safe as possible since we have no idea what the monster is that is hiding somewhere in there... but one thing is for sure... it is in there, and we WILL find it....whereever and whatever it is~

sweet dreams, and Godspeed

Friday, July 23, 2010 4:30 PM EST

WHEW IS IT HOT!!!!!!!

ash is back in the air following her bike crash.. thankfully~~ was just in Seattle.. her fav place

G started getting massage therapy today.. since we have been back, could not find anyone... hopefully this helps the headaches and his poor back...

a good friend of ours is goign to be having an endo, coly combo next week.. he is somewhat uneasy~~ as would anyone be who does not do this like uh, 6 times a year.... please keep him in your prayers for peace, comfort and a pain free experience~~

I wanted to pass on that our little beagle buddy, Sudz passed away.... he had liver cancer... he was a delight form the day he tottled in to our lives as a puppy and brought joy to Connie and her family until he earned his angel wings.. thank you Connie for giving little Sudzy a good home and alot of love...

stay cool in this HORRIBLE HOT HOT weather..... G loves it by the way... hmmm

hugs... Godspeed~~

Monday, July 19, 2010 4:49 PM EST

I have not had time to do an update... my apolgies and again, our most sincere apreciation for your continued prayers for G, our family and our extended tz families...

G is home where we have been for a little over a week... the nausea is improving, but we are keeping the zofran clost at hand.... the headaches... hmmm.. well, we have been to the ED once this week since returning home for IV dilaudid intervention.... the headache is never gone, but we can get it down to a manageable 3

my insistance in the addtional, or repeat MRI paid off... the bones in the back of G's head, at the top of his cervical spine, over the past 5 years have grown closer together... there is a "pinch" if you will of his brain... yes, he really does have one in there :)

we are trying some new meds to see if we can do anything effective about this... hmmm... the last option will be surgery to remove part of the skull at the base in the back of his head.... let me just say that at this moment in our lives, we are thousands of miles away from making that decesion.... so is Kareem and Costa... as a matter of fact, and I quote, "we are not even talking about this right now"

so for now... we will do battle as best we can against the migraines... G is gaining his weight that was lost in oz back... back up from 81 to a durrent 95 NICE WORK G!

this past Saturday, Ashlee and Andrew were riding thier newly purchased bicycles home from the market, and Ash wiped out rounding a turn... she flew over the handle bars and crashed into the grounds, somewhere of the Stone Eatery... Andrew took her to the ED where she underwent Ct studies and thankfully, her brain did not suffer injury.... she has a concussion, cuts bruises, road rash and laceration but she will recover from all.... thank God for His protection... I arrived in Cleveland Saturday afternoon and the nausea was really bothering Ash... today I am happy to report that she was more clear, did not have the tell tale slow response to questions asked her and was not having nausea....

I will also mention, G finished his algebra class with a b+ ! Congratulations G on your hard work, many hours with the tutor, and thank you to a very supportive and understanding professor.....

for now.. please continue to keep all our tz families and warriors in your prayers.... enjoy the summer and try to stay cool~~

Godspeed

Wednesday, July 7, 2010 8:59 PM EST

progress... an expedition, journey, or march through a region ~ I looked it up, just to be sure....

I was fully prepared to head straight in to battle today.... going in to battle against powerful docs who, by the way, have performed true miracles in the life of your child, friends that you love... well, it is not easy... I prayed last night for the Lord to calm the waters, clear the passage way, and calm my soul..... And they went and woke him, saying, “Master, Master, we are perishing!” And he awoke and rebuked the wind and the raging waves, and they ceased, and there was a calm. Luke 8:24

after a phone call to our coordinator, and a quick chat with Dr Kareem.... G was whisked to pre transplant clinic so Kareem could put an eyeball on him.... it was interesting sitting there, listening to pre transplant conversations... hmmm I thought to myself... maybe a good thing that we are here on pre day (not much yelling goes on in pre clinic!) Hearing the conversations, watching the interaction between waiting warriors I found myself so thankful that we are not just starting down this path.... I also noticed, no one today was a sick as they were back in our pre days... my mind floated back to watching movies on the computer in the corner, sleeping on the couch, and the faces of our friends... Mike and Karen, Jessie and Angie, Jarret, Maria and Susan...Greg, Warren and Kevin.... a smile came to my heart, and to my lips....

rather than engaging in a war, a battle of wills, Kareem said, G you look like Michael Jackson on a good day... hmmmmm... honey, it is a good thing you brought him to see me... we reviewed blood work, talked about the red prickly skin that covers G's face, reviewed the most recent biopsy, went over meds yet again... hmmm... ok honey, let's do this, let's do that, let's try this, let's add this, and change that.... we talked about blood clots, and broken ribs and aspiration..... peace, surrounded us and the day was calm...

We hustled to the neurologist~ we looked at CT scans and MRI's - we looked at spinal column, fluid, and bulging discs... we talked about how the brain fits in the head, and how in the back of G's head, well, there is not enough room.... (can anyone say, gee Lin... what a great idea to repeat the MRI?) oh well.... sometimes, even a blind hog gets lucky.... Dr Sasa was kind enough to keep the lights down, and his voice quiet.... he proceeded with his exam, and looked deep in to G's eyes with a powerful little light... well... here is what we have... let's try to change some meds around and get a blood level in a week to see is he is maxing out, and if his kidneys are fairing okay with filtering the medicine through... there are a few more tricks up his sleeve, and we will try each one as we gingerly try to find our way through this headache maze.... I am not talking about just any headache here... I am talking about slam your fingers in the truck door; don't open it for a day, screaming headaches.... the kind that leaves G with black puffy eyes..... if our latest bag of tricks do not do the trick..... then surgery is a possibility... surgery to remove part of the skull in the back of the head, near the base, or top of the neck..... HIT THE BRAKES!!!!!!!! uh, doc, let's uh, keep that on the back burner.... one day at a time....

tomorrow the bone dr..... and iv Reclasp.... Kareem said to touch base with him Friday.... that will tell us if we need blood work, or it can wait til Monday....

now.. G's frame of mind~ he is better just knowing Kareem heard him.... and realized, he is not vomiting, having nausea, dizziness and exhaustion just for the heck of it.... wow, when we listen, what a difference it can make...

today I was reminded, thank you Ash, thank you Mich, that this is G's decision, not mine.... I am only the instrument that serves as caretaker, as ombudsman, ambassador, an advocate, a sounding board.... a calmer of fears, a holder of a hand... I am a Mom... and this is what I do...

Despite the anger that comes with frustration and exhaustion, the unfairness of it all (we are hugging you Angie), there are those who still need our care, so we keep going.... Regardless of the heartache that comes with difficult days, there are those middle of the night conversations... Love creates a capacity for grace, that is immeasurable... it must be that grace that keeps us moving forward, making progress....

thank you for your prayers for G, for Angie, Maria, for all the warriors who fight the fight, and for the families who have allowed us to be here, and the docs who work with us day after day.... even, when sometimes, we have to prepare to do battle...

Godspeed

Tuesday, July 6, 2010 9:15 AM EST

sometimes, you just have to bite the bullet... and, sometimes that means, quite honestly, ticking off folks in the process...and sadly paying the consequences of making waves....

G will have an MRI today of his spine, and cervical spine due to my insistance... tomorrow we will see the neurologist and hopefuly the bone dr so that we can have the very boring conversation about how bad G's bones are and once and for all make the decesion to add Reclasp rather than the daily injection to try to rebuild bone... I say boring because even a person who knows absolutly nothing about bone density, or the lack therof, would look at G's bone studies over the past 5 years and see the sad truth smacking them in the face or should I say hitting them upside the head with a sledge hammer.... I quite frankly am tired of talking about it.... how many times are we going to talk about reclasp before we just do it I ask?????

the process that we are trying for migrane management seems to be working...it is not getting rid of them but making them manageable.... I really don't want to elaborate out of fear of jinxing us... if you are a tz person and want to know what you can ask about for your mirgraine, we are using Maxalt for break through and have added Riboflavin (hmmmm... not sure of my thoughts on effectivness of this) and Depakote ER for maintainence... keep in mind, we are early in this process and what works for one may do nothing to help another with horrible pain of migraine...

I have set up an appt for pain management referal at home.... (LORD, I CANNOT WAIT TO GET OUT OF HERE) I am also trying, trying, good luck to me, to get copies of all of G's medical records, test results, etc etc over the take three weeks to take with me for our PCP... I am searching as we speak, who we can see, other than a psychiatriat, yes you heard me right, for the chest pain and shortness of breath that persists ....

I can so understand why tz families become so IRRITATED with the aftercare process... you are required to come here simply because you cannot go anywhere else with the complex system that is now your body... and, if there is an issue that test results cannot explain, the response is that it must be something you are doing, or not doing, or imagining, or invented, or you are in denial or you should not be thinking what you are thinking, or maybe you are looking for reasons to sty here in hell, and DONT ASK SO MANY QUESIONS!!!!!!..... IRRRRRRRRRRRRRRRRRRRRR
and heaven forbid that you research an issue on your own, and make a suggestion, or and insistance as in my case, for something addtional to be looked at or ruled out... for example... well.. enough griping from me... but, when they did the MRI orginally, why did they not just take 10 extra minutes and look at the cervical spine for compression???? hello, remember our bone issues?????

I am on a mission to get G out of here.... we will get the MRI, we will see the neurologist, we will see the bone dr if she can find time in her constantly overpacked schedule (I feel our visits are usually a waste of time, we just repeat the same conversation we had the last visit), and I am pretty sure we will forgo clinic on Thursday... I have no idea why I would subject G to more kicking and only deflate him a bit more (hugs to you Maria dear)..... once I am sure we are on solid ground, we are heading over the three rivers and through the woods.... for mental sanity if nothing else...to home...

prayfully, we will be ok....

please dont get me wrong... the docs here are truly gifted, and what they do to save lives is well, just incredible...and honestly, I don't know how they keep up with the constant demand on them..We are forever thankful for all that has been done, all that has happened, and all the the Lord has provided on behalf of Gary.... his courage is well, I cannot begin to even touchthe depths of this...

The docs are after all, only people... but, my concern, my primary objective is to keep G mentally strong and healthy as well as physically safe and sound.... if he is not in the fight mentally, then the game will be over.... and right now.... his mind, his spirit needs a respite... that is exactly what it is going to get....

thankfully, school has allowed some extra time for his final in algebra which he will take this coming week... he has worked so hard, spent so much time with the tutor, I just pray he does not loose this class as his goal has been all along, to pass....... faith~

pray for me, for my patience, for my ability to forgive and overlook and understand.... the courage to change the things I can, to accept the things I cannot change, and the clear wisdom to know the difference..... I will talk with my girls and once again, we will make a decesion based on love, based on faith~~

Godspeed

Saturday, July 3, 2010 7:01 AM CDT

4th of July weekend.... Bless all of our men and women who are so far from home, away from thier families and in harms way... We pray for protection, and a safe journey home.....

blood work every morning, (brings back memories of paths already traveled) but feeling better... we are trying a new (another new) med for the intense headache - right now we are in the managable stage.... next week will be busy, every day blood work, the bone dr, the skin dr, Kareem, and hopefully HOME on Friday...

yesterday G shared this story.....

Momma~ at the pool I met a family.... the son, his wife, his borther, his wife... thier Dad had brain surgery this morning - it lasted 2 1/2 hours.... they got the tumor out and he is awake and asking for food... the doc says only ice chips... they did it at Presby.... the tough part for him is still to come, radiation... but today was a good day.... the tumor is gone, and he is awake.... now that is a big surgery..... what a miracle...

as I listened, I thanked God silently for propofol - it makes G forget.....

my orginal plan for the weekend was to enjoy an extended period of play with Grady and Shelby... my heart is heavy..... but soon perhaps, we will head over the three rivers, and through the woods....

Happy 4th of July!

Godspeed

Friday, June 25, 2010 6:45 PM EST

have you ever been to a train station? or seen one on tv or in a movie... you know, all of those rails come in to one place and there is a little guy who sits in the little wooden building, pulling the levers, pushing the buttons and moving the rails from one angle to another? moving the trains changing their direction...

well... today we spent a day at the train station.... this is day 8 of this particular migraine.... upon entering G's room today, his eyes were puffy, his skin was pale, his blood pressure was high.... all gifts of this headache...as luck would have~~ in came the fellow, Dr Mo... nice little devil who is I am sure being tortured by the team... G he said, I need you to sign this release for a blood transfusion.... (did I call that one or what) G asked about a PICC line, hmmm.. well I don't think they want to put one in.... G asked, well, how will I get blood through this samll gage IV? G also asked, PLEASE can you PLEASE give me something to break this pain..... well, we are calling for a Neuro consult, but they are busy.... UH OH UH OH.....

I said.... ok.... let me expalin this to you in terms you can understand... we will have a Neuro consult TODAY, or a PAIN CONSULT... this is rediculas.... well, the little guy said, if you think you can get them here quicker than we can, do it... and good luck ~ well, he offered the inviation, right?

so I called Neuro, inquired to the schedule... the lady on the other end who realy could have cared less, said, oh uh, it will be November.... WHAT???????????????? I said, look lady..... it is going to be today...... so either you cna help me do this, or you can find yourself looking for a new job after I file a formal complaint with the hospital... you make the choice, here is our room number - he better show up TODAY

then a call to the Headache Center of UPMC.... oh well, said the slightly confused lady on the other end, our attending is in Presby, have them page her... give them this number... thank you kindly I said...

so, out I went armed wtih the pager and asked our nurse to call Costa and ask him to page the Neuro Attending who is right acorss the bridge.... OK he said... hmmm, OK.... and oh, by the way, you may want to page Dr Mo..... so I can rip him a new a**

low and behold, who should appear, Dr Neuro..... he was really quite lovely, and immediatly said oh we need to do somethign to break through this pain.... lets try.... bla bla bla bla.... I asked... are you seriously booked until NOVEMBER.... uh well, I guess I am... hmmm I said..... noone is that good.... we talked about metabolic disorders, blood pressure, liver functions, enzymes, MRA, MRI, contrast, no contrast and he decided on MRI (not sure of the status of the contrast) and ordered some new mediacation to aggressively attack the pain... 250 mg of seomthign that I still have to research every 6 hours IV....and something else that melts on the tounge to help break through....

now.... uh, back to the blood.... Costa arrived...... cna you turn the tv off G ~ ok.... well, uh I am not sure you need blood... I am not sure you are hemolizing... OK THEN, WHAT IS THE PROBLEM?????????? Uh... I am thinking, as he is now looking at me, his pump is malfunctioning??? hmmmm ok, well... then lets get a doplar us and take a look see... so, a dopler was ordered and will happen sometime tonight.... then, they (Costa and Kareem, and maybe little Mo too) will talk... they need to brainstorm....

so, the jury is still out - hopefully tonight, at whatever time tonight, hopefully, prayfully, an answer...

keep us, angie and all the warriers in your prayers...

Godspeed

Thursday, June 24, 2010 10:49 PM EST

hmmmmm.... an old advesary visits us again.... hemolysis...

what is it? The destruction of red blood cells which leads to the release of hemoglobin from within the red blood cells into the blood plasma - decrease in oxygen supply, possibly heart failure.....

we have been here before..... but this time, G is going in to this stronger, but that being said, it does not take long for it to take it's toll..... in less than a week G dropped from 98 pounds to 81..... he is tired, and walking is work, but necessary to avoid pneumonia.... as long as we keep him on his feet, the better the chance that we do not end up with this problem....

Dr Kareem or Costa did not stop in tonight but I heard they may be in a transplant..... when Kareem is full bore on the battle plan, he will share with me.... I will be there early tomorrow so I imagine that will be the day...

I looked at G's blood work... his HH is 8.9/28 so first blood transfusion is in our very near future.... a PICC will probably be placed tomorrow.... we will see....

for tonight, need to get some rest.....

say your prayers and remember Angie.... she is really working hard to find her way back....

Godspeed,,,,

to send G an electonic card click on UPMC.com, hospitals, Montifoire

Wednesday, June 23, 2010 6:21 AM EST

pt #1, G is off to the OR (I have not made it to the over to the happiness hotel - hospital- because our power was out and I am not climbing down 8 flights of stairs)

pt#2, Mom - early word this am, no obstruction! Yeah that is good news..... her hialtal hernia is HUGE but.... that is something we know about and just have to deal with and manage...

so.... very good news on Granny and I better get my behind out the door!

also.... saw Angie and her Momma last night.... Angie is working hard to walk again while Momma keeps her steady and encourages her to take another step..... KEEP UP THE GREAT WORK ANGIE!!!! one step at a time....

keep us all in your prayers..... Godspeed

Tuesday, June 22, 2010 4:25 PM EST

ok so... it has been an interesting day.... long story short... g is being admitted, Mom is also being admitted...

g has surg in the am to see where the blood in his urine is coming from....and to see if any of those nasty little lesions have reappeared.... in the meantime, we are waiting to see if he has cdiff, and to see if his liver is eating up his red cells....

ok... Mom..... intestinal obstruction.... enough said? Brought her to the ED with G and her plain film shows a possible obstruction.... we will get a CT and see what we have...

hopefully by this time tomorrow, thigns are better here in the Tabernacle of fun..... (thxx mich for that one)

keep us all in your prayers....Godspeed

L~

Thursday, June 10, 2010 2:11 PM EST

released... last run of iv Vanco done, now will take orals until later next week, then another blood count....

thank you all for your prayers.... we thankfully caught this bacterial infection early, early and were able to get on top of it.... that midnight drive sure paid off....

please continue to pary for Angie as she fights the fight and will one day be strong enough to get released....

Godspeed

Monday, June 7, 2010 5:29 AM EST

ok.... so maybe I spoke too soon.... the nausea and vomiting, shaking hands, severe headache returned last night around 11 p so, a midnight run to oz was in order.... now we are sitting in the ER....

keep us in your prayers.....

Godspeed

Sunday, June 6, 2010 10:06 AM EST

Psalm 69:29
I am in pain and distress; may your salvation, O God, protect me

following the storms and tornado warnings of yesterday afternoon, we decided to go for a drive~

G is taking finals this week, last week compelted his English final (now awaiting grade) and has done this all while going to our local hospital at 9p every night for a Vanco run.... on the good side, they decided to place a power picc becuase noone can get IV access for him and digging every day for a vein, well, was simply not a good choice for G or for the nursing staff.... three days ago, the last Vanco run was compelted... and to my SURPRISE and DISMAY the line (PICC) was not pulled.... I questioned and was told that the dr wanted to be sure the infection G has been fighting was gone and he would not require another run.... uh, uh.. ok.. I know that is logical but I also know the G's body will not TOLERATE a line just sitting there..... they reassured me that MANY people have PICCS in for a year or more.... YES I KNOW THAT!!!!!!!!!! but I also know G's post tz body.....

while we were driving in the car, enjoying the breeze and a change of scenery G's hands started to shake.... he said he was cold.... HMMMMM.... I did not want to say anything but I knew he was not cold.... I knew we were entering the begining stages of becoming septic.... about 15 minutes later, his face started to become covered with the tell tale rash... G - are you sure you are ok.... yes, I am ok Momma... lets get some chinese... OH DEARY.... against my better judgement I said sure.....

as we were eating our dinner, the color was leaving G's face, his cheeks were becoming flushed.... I knew it was going to be a long night..... we came home, I took the girls out and G was vomiting...

off the the ER we went to have that LINE PULLED! The ER was swamped... I explained that G was a tz pt and had a line and was becoming septic and this could potentially be a life threatening situation for him.... we need to see the DR right away to get his line PULLED..... almost three hours later and right at my self imposed deadline at which time I would ahve headed home, pulled the line myself, and headed for Pittsburgh, 11:30 p they called his name...

the on call doc was very nice, very swamped, but still, nice... he remembered G from a prior "encounter" - I said, listen.... I know you are swamped.. he needs some Zofran, prob 8 mg, and some dilaudid for the severe headache and body pain, a bolus of iv fliud, some blood work to take a look at his kidney and liver functions as well as his white count... and the LINE NEEDS PULLED and the TIP CULTURED... he said... OK, sounds good.... our nurse was amazing and had met G on the 5th floor during his Vanco run.... she was kind, prompt and performed everthing quickly sensing the urgency of getting that line out...

at 4a, we left the ER to come home, line free... to wait and see if the syptoms of pending infection were starting to leave...... in my mind I was already tyring to figure out HOW to save the quarter for G... OH MY GOODNESS... two final remaining and if we are in OZ????

this am, G is feeling better.. the rash is gone, the headache mild, no temp, and the nausea has disappeared... he seems to only be suffering from a bit of a drug hangover.... I called OZ and updated the coordinator..... told her I think we dodged the bullet by taking action QUICKLY at the first sign of G's body saying HEY! I AM NOT HAPPY WITH THIS LINE IN ME- GET IT OUT!

so today, rather than heading to OZ to be admitted and treated for septic shock, and potentially facing down another battler with death, we are here... safe and sound, the breezes are blowing in the windows and we are thanking God for once again, intervening, protecting, and giving me wisdom...... every day is a journey, and today.... well..... I am reminded of how close we came to going over the edge.....

please continue to pray for Angie, Karis and so many others as they fight the fight....

Godspeed

Friday, May 7, 2010 11:31 AM CDT

this was shared with me by a dear friend... she told me when she read it, she thought of me.... I was so touched, I wanted to share it..... if you are like me and have fought the battle along with your warrier, your heart will be moved, and your eyes will be moist.....

Happy Mothers Day to all Momma's~~ and most particularly to a Momma in Florida who saved my son's life in the very moment of loosing her own beautiful son ~~ May God Most Richly Bless You ~ we are forever thankful.....

Godspeed

Mothers Who Get Something More
By Lori Borgman

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the pages of time. She says it doesn’t matter whether it’s a boy or a girl. She just wants it to have ten fingers and ten toes.

Of course, that’s what she says. That’s what mothers have always said.

Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more.

Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, a missing chromosome or a palette that didn’t close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can’t be possible! That doesn’t run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing, it’s a wondrous thing. The athletes appear as specimens without flaw -- rippling muscles with nary an ounce of flab or fat, virtual power houses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

As I’ve told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echocardiogram, there’s no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it.

Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair twenty times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the cliches and the platitudes, well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this, you didn’t jump up and down in the motherhood line yelling, "Choose me, God. Choose me! I’ve got what it takes."

You’re a woman who doesn’t have time to step back and put things in perspective, so, please, let me do it for you.

From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require, intense and aggressive the next.

You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a stranger I pass at the mall. You’re the woman I sit next to at church, my cousin and my sister-in-law. You’re a woman who wanted ten fingers and ten toes, and got something more. You’re a wonder.

Happy Mother’s Day.

Thursday, April 25, 2010 6:37 PM EST

there are those days when you will never, for as long as you live, forget where you were, what you were doing, exactly what was happening in the world, maybe even what the air felt like....or, if it was raining.... or recall the sun on your skin as if you were back in that very moment.....

five years, post transplant..... words simply escape me.... I took G to oz, just hoping to find an answer.... some hope, some options... just hoping, asking God to give one day, just one day, pain free.... it seemed to much to think about that maybe he would ever feel the melting of ice in his mouth, or taste ice cream.... eat a steak.... drink a glass of milk.... or be able to get through an entire day without passing out, vomiting violently, or have his bodily fluids stay inside his body...a day not wrapped in towels collecting the bleeding from his legs, shoulders, arms and back......

I was told by our team in oz, we needed a miracle.... and we did not have long to find one.... our miracle came, and we saw and continue to see first hand, God at work....

our hearts ache knowing that another Mother had to say good bye to her baby....but only for a time.....and in that most painful day, gave life.... gave hope.... gave a miracle....

the days, the weeks, the months, the years have not been easy and every day we face the challenge that comes to greet us and G stays strong, filled with life, hope and the ability to rise above..... I thank God for his amazing spirit... without that spirit, he would not be here today...

to say thank you, well, it is so less than our reality.... God is all powerful, all knowing, and through Him alone....all things are possible to a believing heart....

we love you, and thank you for continuing to join us here on the bridge, praying for our dear friends, and praying for us..... May God continue to bless you, your families and all the warriors who like G, fight on....

Godspeed

Monday, April 12, 2010 11:40 PM EST

tonight I was agrivated becuase the dryer croaked.... one more thing in a long list of expense's that have occured since we came home from oz.... as I was climbing up the basement steps, grumbling to myself, G came in from class ready to attack his thesis for his upcoming paper. Our friend Angie was on my mind and G asked, any news on Angie?

I just looked at him, recalling that just a moment ago, the focus of my mind had been that stupid dryer...... yes G, I talked to Linda.....

Angie is very sick and I ask you as I write these words to please pray, expectant prayers, lifting Angie before the Lord in a powerful way....(Linda - I hope you do not mind that I share some information, but I want people to know how to pray) Angie has a transplanted pancreas as part of her 5 organ transplant.... and for what ever reason, it is necrotising.... or, eating itself up... they have already performed 2 surgeries to try to correct this problem,as well as a hosts of other surgeries over the last 12 weeks but, the battle has not yet been won... Dr Kareem has returned to Pgh, and is reveiwing the latest CT studies and doing some research, talking with others to try to determine exactly what to do to save Angie and get her back on her feet... another surgery could happen tomorrow... Linda did not know what exactly surgery means, as they do not yet know what they are going to do.... but, rest assured, the minds are working, the hearts are searching and the answer will certainly come.... Angie has endured alot of personal pain over the past few months, including loosing her home, in addition to the ongoing battle of just trying to live each day.....She was to return to school the day she landed in Oz, suddenly, severely ill....

Please pray for direction, clarity, that the path will open to the transplant team... for rest, comfort, and peace for Linda and Angies Dad.... for recovery, relief from pain, suffering, and the many battles that Angie is fighting... that the mighty Hand of God will be upon her this very night, providing peace beyond understanding, protection and the knowledge that they are not alone....

I personally know where Linda walks and my heart aches for her.... she told me she cannot tell if Angie is awake or not for sure... to the average person, they may think how is that possible... trust me, I know....

tomorrow I will call a repair man to see about that stupid dryer..... if only a repair man could be called for Angie.....

all things are possible to a believing heart, and we never give up....thank you for your prayers for Angie.... please also remember Greg (Ohio) who is doing battle with an infection and his brother who is in Texas battling rejection....for Randy's (Ohio) family as he earned his angel wings yesterday~ may Peace surround them....

Godspeed

Friday, March 26, 2010 7:25 AM EST

So much has happened since my last notes here….. on the 17th of March, just in time for St Patty’s day, we welcomed little Shelby Cale to the world! She came quickly, and she and Momma are home with Big Brother Grady and Daddy…

Every time I hold her I think of the most beautiful gift we have been given from God…. a little healthy baby….. a child of God, His treasured possession

Zephaniah 3:17 NIV
The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing.

It always amazes me how G finds his strength… the surgeries that he has had over the past few months suddenly seem like a distant memory… he is heading back to school later this month… His life, as with all transplant recipients, will never be, uncomplicated…but that is okay… a real life lesson, in taking one day at a time…

Please continue to pray for our friend Angie who is really struggling in Oz… she recently had more surgery to correct issues with her pancreas… Angie is an amazing young woman who loves life, loves animals and if you have ever read her blog, shares the world with all of us through her vision, her experience, her life, as only she can do… her Momma is with her, and they need your very expectant prayers… all things are possible to a believing heart…

Please also continue to pray for Maria… she continue to struggle
Welcome with us, and sing praised to God for our little angel, Shelby Cale (Grady is such a wonderful BIG brother)

Godspeed

Wednesday, March 10, 2010 6:15 AM EST

I learned a long time ago that the moments that are the most important are the ones that will change your life forever..... I also learned that sometimes overwhelming joy and unspeakable sorrow can happen at the very same time.... in the blink of an eye, life is forever changed....

today, our little Grady turns 2 years old! HAPPY BIRTHDAY SWEET HEART! He has been part of our family for such a short time, and at the same time has always been with us.... the joy he has brought to all of us is, well, I just cannot begin to explain in words, my heart cup runneth over, simply said.... his sweet little smile, his dancing eyes, his constant jibber jabbing... riding his BIG TRACTOR through the house, wearing his boots, racing to the window to see the deer run in the back field, and coloring a picture for Mommy, reading his books with Daddy, good nite moon..... quietly falling to sleep at the end of his busy day..... Grady has the sweetest little heart, and such an imagination...He is the joy of our lives and every day we thank God for allowing us the pleasure.... Happy Birthday Grady~ Ninni loves you so much!

Today our hearts while joyous are at the same time heavy..... Kevin left this earthly life two years ago today.... he and Grady somehow passed each other in the circle of life, and the impact to our hearts, unmeasureable... I have come to realize that it is not for our loved ones who move on to their heavenly lives that we cry for... it is for ourselves, because we are left to live without them.... Kev forever changed our lives... today we remember the joy of his smile, his laughter, and his kind heart.... one of my most precious memories is just having the privilege of sitting with Kev, in the TICU, just holding his hand while he slept~ today, our South Georgia family is in our prayers... we love you all and treasure you in our hearts....

Today.... celebrate life! be aware of the joys that surround you even when you are in the midst of tragedy... they are there, and those moments, will forever change your life... Godspeed

Monday, March 1, 2010 9:12 PM EST

It takes more than medicine to get well, to be strong, and sometimes, getting well is, well, not the reality

I have learned over time, through my personal experience with Gary, that sick kids sometimes turn in to sick young adults.... suddenly, they no longer fall in to the criteria for brief magical experiences that make their very complex and difficult lives a little bit easier to take.... Young adults in particular, can feel very alone, and like they simply don’t fit.....sometimes, they just need a break....

Dreamstreet~~

check it out.....pray for this effort, support this effort, perhaps volunteer

~ if you know a young person who could use a lift, use a break, needs a dream, needs an escape.... please, share this information....

http://www.dreamstreetfoundation.org/

Godspeed

Sunday, February 28, 2010 9:40 AM CST

tomorrow will bring with it, March.... Please Lord, let the air temps start to warm and the snow globe to stop shaking..

Gary continues to recover and is doing well.... I look at him and it is hard to think that just a couple of weeks ago, he went through three surgical procedures to battle those pesky kidney stones... th right side pain is lessening with the increase of corteff.... oh that is wondrful you might be thinking, and, it is ... but, increased corteff comes with a cost.... G is taking 75 mg a day..... that is just, well, not cool, but for now.... it is ok.... and that is all we have to have...it does not have to be perfect, it just has to be ok.... fuuny how Kareems words of almost three years ago have really stuck with me....

Please continue to pray for sweet Angie.... she is really facing battles right now, and suffering pain and well, all the other crap that goes along with fighting the war...also, continue to remember Maria... her battle continus as well....

as March arrives, we are nearing G's five year mark of his rebirthday..... from hearing, "first, we hope to get him off the table, to we hope to see one year" to present.... how amazing is God's power and mercy?

Godspeed

Thursday, February 11, 2010 5:20 AM EST

Philippians 4:7 — "And the peace of God which transcends all understanding will guide your hearts and your minds in Christ Jesus."

the last three weeks have been testing.... for some reason, my patience run thin, and my ability to become agrivated is quick..... over the course of these last few days, Oz has been hammered, really hammered by 2 giant winter snow storms.... we have had 29 inches of snow.... the further east one goes, the worse it is... last night G and I watched from the warmth of our room as a pick up got stuck at the bottom of the unplowed tiny little road behind hotel tz and the guys dug, and dug, and dug to get themselves free..... they slowly made it back to the top of the hill..... G finally slept through the night last night for the first time since we have been here... there were not mournful breaths of pain, restless tossing and turning or multiple up and downs.... he is exhausted...

but, he will keep at it, just like those guys stuck in the snow..... pushing forward as he always does....with a happy heart like nothing is wrong anywhere in the world, his or otherwise.... today, we will head home.... according to the internet, the passage is clear... Dr Buffalo has already warned me, do your laundry, prepare.... you will be back....we have decided that when he leaves Pittsburgh later this year, heading back to Buffalo, he will remain our Urologist...

Dr Kareem has no idea what the problem is on G's right upper quad... he is hoping that an increased dose of steroids will resolve what ever it is, and quiet it down....we are now at 25x3~ for now, we will use dilaudid and zofran as needed to keep the pain and nausea at bay....

Please continue to pray for Angie who is fighting on multiple fronts....for Maria who also is in battle with constant pain, for Jimmie and his family who are just starting on the path..... may God bless you beyond your imagination...Please pray for all the warriors here in Oz.... as bad as you have ever seen, this is a fight of, well, you have to experience it to know it, to really understand it....

Transplant is a journey.... life challenging, life changing... and a miracle that is beyond anything the mind can grasp.....

Godspeed

Wednesday, February 10, 2010 7:26 PM EST

ok... I am starting to sound like a broken record or like Humpty Dumpty after he fell off the wall and cracked his head.....

todays surgery, yes you heard me right, went well.... good ole Dr Sternberg removed the stent, and went on a bit of an exploration to see if there were any NEW stones he could grab since he was in there anyway... there are a couple but they are still the right kidney (we are equal oppurtunity kidney stone hosts - left, right, left, right)

he took some tissue, and did a flush... and ordered some interesting blood work, and some far out urine test which we will go in to later.... to try to find out WHY G's body has decided to mass produce these babies.....

hopefully, tomorrow, the roads will be open in Pittsburgh and we can make it across the three rivers, through the tunnel, and wind through the woods to home...... Thank you Judy for finding someone to DIG out my drive and open up the back walkway and door so I can get G in the house.....

so hopefully, the right quad pain pays attention to the dilaudid, and the nausea pays attention to the zofran, the roads are clear, well at least, driveable... and we find our way home for at least a couple of weeks....

I leave us in God's capable hands....Godspeed

Monday, February 8, 2010 9:48 AM EST

HAPPY BIRTHDAY DENA! WE LOVE YOU HONEY!

6:29 p G did well in surg... the large stone was removed from the left ureter... YEAH! the bad news, Dr Buffalo had to place a new stent due to the damage and inflamation left behind... so yes, this means, one more surgery to resolve this round.... hopefully that will be Wednesday morning..... I had hoped to head out of oz tomorrow, even though, we have not yet resolved the issue with the upper right quad pain... I STILL say, pancreas.. but.... I am not sure if because the numbers are not supporting my theory OR if the demand on Kareem and Costa currently is contrubuting to the thoughts that this is not the problem when really, they dont have time to investigate..... admitingly, I am somewhat concerned that I am taking G home in the next few days, with the same issue that brought him back here, minus the kidney stone issue.. but.... one day at a time....

I am thinking about placing an add on Craigs List asking for some help to dig out my drive and walkway to the back door.... not sure how we we get to the house, and get G in the house when we arrive, hopefully on Thursday... and over the next couple of days... more snow... hmmmm....I will have faith...

for tonight, G is on pain meds (dilaudid) and nausea meds (zofran) and hopefully will get some sleep.....

for now...... please continue to pray for Angie...if you would like to send her a free ecard and cheer her up, go to UPMC.com - hospitals - Montifiore, and click on ecards - Angie Mitchell...you dont need the room number...

Godspeed

It has been an interesting day in surg today…. We arrived at 5:30 a and G was moved up from 10:30 time slot to 7 a time slot due to cancelations~~
The blood work was dropped so surg had to be halted until they could pull more blood and do a stat lab… then, back rolling again.. poor G and poor Dr Bufalo….
I am extremely tired today and will be so glad to get G back to hotel tz…. I am sure he will need to sleep and I FOR SURE need a nappy….

Will update later after G is out of the OR~~

Godspeed

Saturday, February 6, 2010 8:11 AM CST

It is a snowy, winter morning in oz…. this morning I took the girls out in front of the hotel because I cannot open the door to the back.. the snow is up to my knees in the flat drive in front of the hotel~ so, probably about 17 inches or so…and, it is still snowing, not flurries, real snow ~ last night the flakes were the largest I have ever seen…. Some were as large as the palm of my hand…they were truly beautiful! The official snow fall now is 17-24 inches…. 27 inches at 7 Springs – of note one of the hospitals here, Jefferson Memorial Medical Center has issued a condition black – no new patients – they have no power and are operating under generator power only with no idea of when they will be back on line…..they are not part of UPMC and hopefully UPMC does not suffer the same fate…I am sure once people can manage to find their way on the streets, the ER’s will start to fill with accident patients and heart attacks…

Here in oz, they are not accustomed to HUGE snow falls and more importantly, they are less accustomed to managing this kind of snow fall.. the main highway in to and out of oz is closed, I 79 closed, the turnpike closed… there are semi’s and vehicles abandoned all over the place here and they are just plain city folk… no big ole tractors with front end loaders, big ole 1 ton 4 wheel drive pickups with monster plows… they were trying to clear the drive with a small snow blower this am…. Hmmm…

Yesterday, G left the hospital in a wheel chair after his combo platter scope and biopsies.. Even with 4mg dilaudid on board he could not stand up – forget being able to walk… this morning he is suffering from nausea and severe pain in his upper right quad…. The pain in the upper right is masking the kidney stone pain on the left side… hopefully surgery will stay on schedule for Monday to get that stone unlodged and remove the stent… Given the fact that I cannot get the car out of the parking gargage to get to the hospital, (which is only 5 minutes away) I will give him zofran here… even if I could get him to the hosp, by the time they get done arguing about what to do, I will have the nausea calmed down…. And there would be the additional issue of his sever allergy to the bed linens there…. By the time we left the MPU yesterday his back was bleeding and his legs were beet red and ready to bleed.. our anesthesiologist could not believe his eyes… he gave him 50 mg of Benadryl, and then another does of 50 mg within an hour of each other…..to no avail…
Hopefully, prayerfully, G someone will find the root of this problem…. As G keeps saying, please listen to me, something is wrong… I am in pain, I am nauseated~ this trip to oz continues to be frustrating given the disorganization in transplant right now, and the extreme demand on Costa and Kareem … the hospital continues to be full, no beds available…

For now….. zofran on board, resting on the couch wrapped in a blanket… outside, the snow falls…

Godspeed

Friday, February 5, 2010 8:17 AM EST

today we arrived at 6a for and endo and flexi with biopsy.. please let them find the cause of the right quad pain.. I still say, pancreatitis...they disagree...

we will see, and hopefully today....

once we are done, and safe from any possible bleeding.....we will head back to hotel tz for some much, much needed rest.... hopefully a quiet weekend then surg on Monday to try to find and get rid of that stone that is stuck in the left ureter...

hoepfully, prayerfully today, an answer....

Godspeed

Wednesday, February 3, 2010 8:46 AM est

8:21 p long story short... not enough time was scheduled in the OR for Dr Buffalo... so, the good news is, no new lesions in the urological system! and, stent is in to open the ureter and drain the bladder, and sadly, stone is lodged in the tissue... so...Friday endo, flexi and biopsy.... then Monday back to the OR....doc says he will dig that stone out then..... for now.... pain.... and lots of it...

Godspeed

the morning comes with tiny snow flakes flying through the air... six more weeks of winter according to Phil... and, the calender...

today G will head to the OR for surg number, uh, 45 or 6 or 7 or... I have no idea at this point... Dr Sternberg will once again go after the 6.0 ml kidney stone lodged in his left uretor and causing great pain... they will install stents in both sides as this kidney stone did not arrive alone; it brought plenty of friends along with it and sooner or later, they will be on the move as well...so, if his body will tolerate the stents they will hopefully provide a path of little resistance for them to find thier way out..... he will also take a look through the entire urological system to see if any of those pesty little lesions have reappeared.... prayers for Dr Buffalo~~~

last night, HH dropped so needed a unit of blood to ensure we are safe for today.... the beauitul dark, rich red, irradiated blood was running for oh.. 20 minutes and the IV blew... nice.... an hour and a half later and a new bigger iv in the back of his arm - OUCH - blood was running again....

this morning while waiting the ride to the OR, G is walking the halls.. too much pain to lay down, or sit... pain that makes breathing difficult....

we have not seen Angie, who is just two floors below us... she has EBV so off limits to G.... Angie.. know we are thiking of you and hoping you are feeling better....

will update later today after surg......

if you get a chance, take it... if it changes your life, let it.. Godspeed

Thursday, January 28, 2010 8:07 PM EST

if you get the chance, take it... if it changes your life, let it!

After being in oz all week, well since Tuesday... we are not further along than before we came....

Monday G was suffering pain in the right upper quad and vomiting... first thought.... pancreatitis...a call to oz lead to a trip to our local ER~ blood work, perfect… CT scan.. hmmm

Bilateral kidney stones… nice, their back…. Possible ilieus (obstruction in layman’s terms)… ok, well, that could be important… possible pancreatitis… and oh the possible aneurysm in the splenic artery that no one even mentioned to me….. uh, that may be important, right?

A fax and a phone call to oz later, and the additional benefit of vomiting meant we were loading the car, and making a run for the border… through the woods and over the three rivers to be a direct admit…. Oppppsss… upon arrival in Pgh, no beds in tz…. WHAT????

Ok, plan B – zofran to hopefully quiet the nausea, NPO, and be on 7 west at 7 am…. Blood work done, a 20 ga in (in case of repeat CT with contrast) or worse yet, emergency surg…..) then…. Wait…but that’s ok..

A phone call to the nurse Patty, no one is to see G except for Costa (who was in the OR) or Kareem who is just barely getting around.. poor thing… Kareem appeared with his typically dark eyes, a lovely scarf that had been a gift around his neck… what is going on honey?

Hmm, perfect blood work, extreme tenderness in upper r quad…hmm, no fever, pancreatitis???? Hmmm , and what about that aneurysm? Hmmm.. ok, lets make some med changes, increase the steroids, and add some po dilaudid… and let s scope from top and bottom, get a cystoscope…

Back at hotel transplant… I am on the phone trying to get things scheduled… great no scope until next Friday… and we can see Dr Sternberg and Jackman next Friday, but not sure when we can get the repeat cysto… so tonight, I sit here tyring to figure out what to do…. Do I take G home until next week, still sick, still in pain? Or… wait here…. Hmmm…in case something happens, we are here…. But… at the same time, just waiting….

Transplant seems to be in disarray… I am sure it has been tough with Kareem being injured…..

Pray for all of us here in oz… and pray for Angie… she is fighting the good fight and making small steps forward…

Godspeed

Friday, January 22, 2010 9:03 PM EST

our good friend Angie is seriously fighting for her life tonight... she is in oz and her Momma is there....

Please.... pray for Angie.... Please....

all things are possible to a believing heart....

Godspeed

Saturday, January 16, 2010 7:50 AM EST

G is doing better.... we are not sure what happened... but, blood pressure now stable again, blood work is perfect.... hmmm... for now... we are riding this out, what ever "this is"

over the past few days, we have all been shocked and horrified by the news and images coming to us from Haiti....

for all of us who know how to run IV's, insert feeding tubes, change complex dressings, administer narcotic pain medication.... all we want to do is get on a plane, and get over there and help..... but of course.... that may not be a reality.... SO WHAT CAN WE DO???

GIVE, even 10.00 to the American Red Cross/Haitian Relief... GIVE BLOOD, and log on to http://www.redcross.org/ and give whatever you can....

It does not matter where the suffering is....it is suffering of unimaginalble pain....

Please..... help today.... Godspeed

Tuesday, January 12, 2010 11:02 PM EST

as the world here in the western hemisphere falls to sleep, we are in the ER.. pale skin, falling blood pressure, weakness, dizziness..... hmmm... and a slight tinge of blood once again....

a quick call to Costa... yup - need to get some blood work and yup, it needs to be tonight... sorry - oh, that is ok... and how far away are you again... 4 hours through the woods and over the river... and remind me one more time, we can fly in there, right~ yup... but, lets not go there just now...

... the ER doc, bless his little heart, he tells me it is probably a virus.... oh ok..... Doc I say.... let me just reassure you, I am not going to freak, I am not nervous, this is far from the worst my eyes have seen and this, you just have to trust me here, is not a virus... just so we cut through the crap right from the get go.. and by the way... be sure you order CBC, HH, kidney functions, liver functions and get me a print out when the blood work is back... and oh yeah, that open wound, don't even waste your energy, not MRSA - pyroderma gangronosim..... here is Costa's cell number and uh, he may be asleep so give him a second to wake up, but he is expecting you... doc, are we cool here? ok... good then... what a nice man good ole Dr McCann is.... glad he is here tonight....

well for now, jsut pray we don't have a bleed in there and pray that they get the blood on the first stick... and Kareem... I sure hope you are feeling better....

Godspeed

Tuesday, January 12, 2010 1:10 PM CST

please continue to pray for little Ares... they are not sure this tumor is cancer....regardless, it has to come out.... lift this little guy~~

today I heard from Michael that Kareem fell on some steps and broke a couple of vertebra requiring surgery....

I am trying to get addtional info but for now... please lift Kareem in prayer....

Godspeed

Friday, January 8, 2010 5:56 PM EST

Please, if you read these words... pray for our little friend Ares~ he has been doing battle with neuroblastoma since he was just 9 precious months old and along wtih his famly, he fought his way in to remission... until now... Pray for his family as they await the plan on Monday....

http://www.caringbridge.org/visit/aresparsons/journal

Be so thankful for your healthy children.... and please support the children who are not so lucky...

lift them in prayer and support Nationwide Childrens Hospital, Columbus....

Godspeed

Friday, January 1, 2010 7:33 AM EST

the first early morning walk of the very first day of a new year, and in this case, a new decade, always leaves my mind to wonder....today it is cold, very cold, and the snow is falling... Chels, Toshie and me crunch over the walks and road in the frozen facade that buries the grass who along with me, awaits spring....

G sleeps soundly... what a blessing... sleep does not ever I am convinced, come easy to a transplantee...

the girls and I come across a neighbor already out early to remove the Christmas lights.... I wonder, where is everyone? There are no cars anywhere.. a strange quiet hovers in the air...are they just sleeping in? maybe some, had too much celebration? hmmmm,what will 2010 bring... new babies (we are already focusing on our new arrival due March), new life for some, a very few, who are in need of organs... which means, loss that must be endured by families who can turn a tragic experience in to a postive outcome... most call it the gift of life.... well, really it is, (just my opinion) the gift of hope.... sometimes, simply put, the transplant does not work.... as Kareem would say, it is always God's decesion.... I wonder who will leave us all this year, and cannot believe that two years since Kevin's passing will be marked this year, who will appear to forever change our lives....what will the weather be like, when will the house sell and what is the next chapter of life to come....when will we be heading back to Oz...what is it that will take us there and.... well, we will cross that river when we get there as I know we will....

reality keeps my perspective in the here and now....and my mind to wonder about the bigger picture.. after working through a partial obstruction on Christmas Day, G is doing ok... weight right now is a problem.... for some reason, he is loosing weight, blood work is ok... we will be working on that...

as I head for my first cup of coffee for this decade, of this brand new year... I hope that 2010 brings miracles to many, love to all and peace...peace in the world, peace of mind...peace...

May you live your life for a greater cause and may God bless your family abundantly....

Godspeed

Thursday, December 24, 2009 7:52 AM EST

Miracles... last night I was at Wal Mart and a lady had a sweet shirt on that said BELIEVE and under was a very Jolly Old Elf, whom we all know as Santa.... and it struck me.... I was taken back to a piece I heard on the news a few nights ago about Miracles... the essence of the piece was, Does Anyone Truly Believe in Miracles? or are Miracles a thing of by gone days.....

hmmmmm... well, for us in our family, we not only believe in Miracles, but have been living a journey of miracles for the past 6 years.... yes, G will only be 5 years out in 2010... but it started long before that....

I was thinking about Hanukkah, the celebration which took place after Jewish revolutionaries had retaken the Temple from the Syrians. Wanting to rededicate the temple to God, restoring its ritual purity ~ and only able to find one days worth of oil to last the necessary 8 days it would take to complete the ritual purification, they lit it anyway....miraculously the oil lasted for eight full days

I was thinking about the Birth of Jesus.. it's a miracle of sorts that He was born in Bethlehem. His Mother and earthly Father lived in Nazareth, four days journey from the north ~ Continental was not flying back in those days and Mary was at the end of her pregnancy...wrapping a new baby in swaddling clothes was not unique, His parents were poor, and his place of birth, the most simple. The manger however; the fact the he was laid in a manger ~there is the miracle. The simple, common manger is God's unfathomed humility. That He is willing to humble himself from the height of glory, not just to kings' palaces, but to descend to -- and become -- the poorest of the poor.

Miracles..... miracles are alive and well and out there for all to see and grasp.... some would say that if you experience a miracle, well, one may even hear a gasp of relieve, but miracles don't come easy.... after all, we know the path of Jesus.... and if you have visted us here on the bridge, you know our path too....

this Christmas, may the miracle of the simplicity of a manger, resignate in your heart....may the realization of the provisions set forth for mankind on that night, oh Holiest of Nights, by God placing his only Son, in a simple manger become your miracle...

Merry Christmas from our family to yours....and to our transplant families who we love so much... you are part of our miracle... and we love you....

Godspeed

Sunday, November 22, 2009 6:10 PM EST

we are entering the week of the celebration of Thanksgiving... my, (Lin) favorite holiday) I hear so many people saying, so, what are you thankful for, on the morning news cast, email us and tell us what you are thankful for...

as plans are made by families all over the country to gather together, who will bring what, when to finish the last run to the market, and who will sit where around the table, and lets shine up the china.... my heart is hopeful that you will truly consider how blessed you are.... if you sit across from those you love to share this meal together... look around you.... take heart notes..... and forever keep the picture of this moment in your mind, burnish it to your soul.... and, most of all, give thanks....

every year now, as Thanksgiving comes.... one of the first things I think about is, Gary can eat.... gone are the days of him fighting to stay awake, endure the pain and nausea to join us at the table with his TPN running.... God, has shown as so much mercy, so much love..... my words here, no matter how I write them, cannot begin to express the incredible graciousness of our Lord..... Garys life was made possible, from a very impossible situation, by the love and courage of a family we will never meet.... if I could say one thing to them, it would be may God so richly bless you, abundantly....

Please remember with us, those who we have loved so dearly, for whom the post transplant journey was far too short.... those who will live always in our hearts, and will always be such a special part of our lives...the bonds that are made, such as those with our South Georgia family who we love so much...are just so special and mean so very much..... We also ask that you pray for our extended transplant families who are still fighting to stand strong on their post transplant feet... Maria, we love you honey and you never leave our thoughts and are always in our prayers.... Jessie, Karen, Mike, Angie, Greg... so many others... we love you and wish you the very happiest Thanksgiving...

we are blessed to be at home, where we will have the privilege to gather together with those we love....little Grady, Mich and Jas (and baby Shelby who is not quite here yet, but kicking up a storm!)... Ash and Andrew....

Happy Thanksgiving...... Godspeed

Saturday, October 31, 2009 8:13 PM EST

As I stood at the top of the ridge which is at the top of the path behind hotel transplant where I walk the dogs..... I looked back at the hotel.... in our room was the dim flickering of the tv.... the three windows next door were dark where a family was sleeping - preparing for the coming day of returning home after a fire... just a few windows down and over, a wheel chair sat quietly in the kitchen.... a few windows below a wedding gown hung with a Mother and her daughter surveying the beauty...no doubt imagining the magic of the coming day....a few windows up and over a young woman sat at her computer, on the phone with her head in her hands.....

At breakfast I met a lady from Colorado.... her husband had recently had an isolated intestinal transplant....released to hotel transplant, he was doing well... there was a young boy in the elevator wearing a mask.... he told me he was recovering from a transplant and was anxious to go home....life flight passes overhead on it's way to Children's.......

It occurs to me that life is a series of events..... No matter how big, or small, how traumatic or insignificant....one after another, and all at the same time... hold tight to the steady hand....

G was released to come home..... Kareem would have liked him to stay in Pittsburgh to recover, but 6/8 weeks just seemed so very long..... and, I told Kareem I think he would recover more quickly at home.... yes I will monitor his blood pressure, yes, I will watch his temp.... will even have and H/H drawn next week....and yes, if we even think we are in trouble, I will call you on your cell.....

Ok... agreed....

we traveled across the three rivers, through the woods to home sweet home noticing that suddenly the wash of color that had dressed the trees just 4 short weeks ago have given way to the gray skeletons of branches, dressed for the winter snow.... for anyone passing by, who may glance in the windows.... foot ball plays... Georgia vs Florida... GO DOGS!!!!! Quiet surrounds us, and rain falls outside.... life.... a series of events, ever changing, every moving....ever reminding me that we in deed are the lucky ones....

Sweet dreams.... Godspeed

Friday, October 23, 2009 7:58 AM ESTCDT

10:30 pm - the good news is, the lesions which were previously removed from the urinary system have not returned! Nice work Dr Buffalo!! (Sternberg) The other good news is, Kareem and Costa were able to remove all the intestinal and rectal lesions! They had to do some vascular repair while in there, but that went well.... G has a complex system, "dramatic" is the word Kareem uses to describe.....

tonight G is doing well... the pain is being managed with the dilaudid pump and we are working hard to control the itching! I took 4 sets of bed sheets to hotel transplant to wash them and hopefully keep G from itching to pieces

thank you for your prayers and many greetings left here for G~~ Godspeed

at 7:15 a, G went to the OR.... I went to pre op with him to just calm his nerves... the more time he goes to the OR, the more anxious he becomes each time....pre op is chilly, crowded and busy - peps there for the most part are all about the business at hand - they are used to the deal, patient after patient after patient....

the smiling face of Dr Costa and comforting presence of Bill along with the friendly greeting from the anesthesia doc who has taken care of G so many times made the tension not quite so tense, the air not so cold....

everyone is on board today.... Kareem, Costa, Sternberg and oncology....

pray to day for clarity, direction, and the Lords ever presence in the OR..... for post operative comfort and pain management.... also pray, that the lesions removed just a few weeks ago in the urinary system, have not returned... I will update the bridge later today.....

Godspeed~~

Sunday, October 18, 2009 3:51 PM EST

yesterday arrived with a postitive culture on G's line.... irrrrrrrrrrrrr...... so, a few phone calls, some pre authorizations, directions, a few more phone calls - iv vanco was delivered to us at hotel transplant....

perhaps this is what was causing G's increased itching yesterday.... our first run of vanco was a bust.... would not flow, not matter what.... because we could not be sure if he got any, or how much he may have gotten the decision was made to wait for 12 hours and proceed with the second run and hope that he did not get a temp.... so far, so good... infusion #2 went lovely.....

today the sun is shining and the trees are beautiful...it is nice not to see snow in the fall air.... WHAT???? SNOW, isn't it OCTOBER???????

haha... we enjoyed a nice evening with Vivi and her sweet daughter Taylor....and Taylor thank you for the beautiful seahorse picture! WE LOVE IT!!

enjoy this beatuful fall day..... we miss you Mich, Jas... and Bubby- when Nanny gets home honey we will hop on the 4 wheeler with our mittens and hats and head out!... I look so forward to meeting up with you to go to the market Ash... and hear all about yours and Andrews plans to convert your basement....

Godspeed

Friday, October 16, 2009 1:15 AM ESTCDT

Happy Birthday G!!!!!

We are all so proud of you and the young man you are! Your love of life and everything in it, your ability to always look past the clouds and reach for the sun and your funny sense of humor!

You are my hero honey...... Momma~~

Thursday, October 15, 2009 5:23 AM EST

sometimes life just calls for some laughs..... we enjoyed gathering with our friends Nikki and her Momma Nancy along with Hans and his Momma Jolene and Dad Fred on the 12th floor in what was the family lounge (sort of) which is currently a warehouse for excess chairs, tables, carts and all kinds of other crap that apparently has no where to go. Karis Mom Debbie stopped in as well..... some pizza and some smiles.....just what the Dr ordered ~ Nikki was on Costa watch and we all enjoyed a much needed break to the normal tz routine ~ we shared memories of days gone by, and precious friends who have come to be part of our hearts and lives... it struck me as names just bounced around our little circle,,,does anyone know what is going on with Carissa-how is Maria doing-remember that time that G and Jim...that was the day I met Warren....heres a hint; oh yeah, Kevin taught me that.....hows the married kids getting along, is Michelle feeling better.....we are all family, we are all in this together....

Karis is making progress and is hoping to leave TICU in the next few days~Hans looks pretty darn good after his near death swipe with an anuerism ... keep them, along with the many brave warriers here in your prayers.....they are an amazing group

today we will meet up with Kareem for a some blood work and a quick peak as G has been experiencing increased bleeding, most particularly after he eats.... surg is slated for next wednesday.... the surg schedule has been packed of late....Kareem and Costa were finally finished with the last case around 8:30 last night... how do they do this every day?... sometimes they yell, sometimes they laught (but they are never like the smile wearing gang on Three Rivers) honestly, I have no idea....

often times I think, well, I just plain know that they have no idea of the cost that transplant families pay..... at the same time, I wonder what the cost is that they pay to do what they do.... in thier personal lives, physically, mentally....emotionally.... as Costa once said, it comes with a price... more so, it comes with blessings....like sharing pizza with friends in an overgrown closet in the heart of oz...

Godspeed

Tuesday, October 13, 2009 8:25 PM EST

another day, another delay.....

now it looks like surg will be next wednesday~~

Godspeed

Friday, October 9, 2009 10:10 PM EST

I am so happy to let you know that Hans is improving! I just had a note from his Momma and he is up in a chair.... hang in there Hans! Keep up the good work!

your prayers are so appreciated~~

G's PICC is doing well... arm is bruised and very tender, but it flushes beautifully.... thank you Dr Amesur for being there as you always are....

we know surg will not be Monday...possibly Tues, maybe Wed.... one day at a time...

sleep well... Godspeed

Wednesday, October 7, 2009 4:34 PM EST

surgery update....

has been moved to the first of next week.... will either be Mon or Tues.... we are working now to get flushes and dressings in place for the PICC - small details..... will resolve tomorrow~~

Please pray for Hans and his family who are from Minnesota.... he suffered an abdominal aneurism last night requiring emergency surgery..... your prayers are appreciated....

Godspeed

Wednesday, October 7, 2009 6:35 AM CDT

G was to have had surgery #3 this morning however it was cancelled at midnight last night..... I have not talked to anyone at oz yet but assume they are in a transplant....I will update the bridge once I know what the plan is...

please pray for Kareem and Costa.....

Godspeed

Thursday, September 17, 2009 4:23 AM EST

today is Ashlee and Andrew's wedding day.....

we arrived in Westlake after a train delay on 83 followed by SURPRISE! the bridge is out need to find a detour! The wind came howling across Lake Erie where we were assembled with the Pastor to learn the exact thing we are to do when to make this day happen.....the most important piece of advice we were all given was, enjoy the moment....savor this life event.... enjoy the moment..... Pastor of course had no idea of the depth of her words.... as Ashlee and Andrew were instructed, and practiced thier words without actually saying them (that only happens when it is for real) and G was trying so hard to figure out how in the world to work the Ipod..... my mind was going back to the days of holding Ashlee in my arms, dancing in the kitchen.... "I would waltz across the kitchen with you in my arms, waltz across the kitchen with you.... I love your sweet eyes and all of your charms... I would waltz across the kitchen with you" a quick dip and laughter would ring through the house.....

Andrews brother and his wife threw a very nice BBQ for Ash and Andy... corn hole, burgers, brauts, and casada cake.... what else is there???

Ash was growing tired, as were all of us... her eyes moved across the room, met with mine and we smiled.... the only thing missing Momma is Michie....it is ok honey....everything is going to be ok...back at the hotel, I lit a fire in the fireplace, G headed for a hot shower to thaw his bones and Granny settled in with her book....

my cell phone brought the voice of a tearful little girl who spends her days all grown up, and in charge of the world... Momma... my sister is not going to be here... I know honey bunch... everything is ok... tomorrow you and Mich will talk on the phone, you will laugh, and hug across the miles.... everything is going to be ok.... You will wear the pearl earrings that Michelle wore on her wedding day, her heart will be with you, and her arms are around you.... everything is going to be ok....

ok Momma..... did G figure out how to work the Ipod... yes.. he is good, maybe not entirly true at that moment but, tomorrow morning after a quick Ipod lesson, it will be... I will see you in the morning honey.... I love you.... I love you too Momma...

and here we are... it is 4:30 am on the day of her wedding....the fire is burning, and the soft sounds of sleep fill the room....Chelsea and Toshie are snoozing after trying to figure out - hey, this is not oz??? where are we anyway... ahhhhh, they have such good spirits.....

I stood there early last evening, on the shore of a rolling Lake Erie running through memories of the childhood of my sweet little girl.... as the wind from the North ripped across the park, reminding me that our lives were not always calm, smooth or typical....I thanked God for Ashlee, and that this day was being allowed to happen, that she and Andrew found each other in this great big old world... I thought of Maria..... how she loves the water, of how hard she is fighting....of how little girls dream and play wedding with pillow case veils....

Ashlee when you read these words I want you to know how blessed my life is becuase you are my sweet little girl, yes I know, you are all grown up now, but pea pod, you will always be my baby....you will always be Michies little sister and G's little Ash, you will always be our Schmoovie..... we are all so proud of you, and so, very happy for you, our hearts are dancing.....Andrew, take good care of this precious little one....I know you will.... I see the love in your eyes when you speak of your bunny, when you look at her....we love you both so much....

say today, a prayer of thanksgiving, and for life full of promise, and blessed ....as on the shore of Lake Erie, Ashlee and Andrew share thier vows.....and our hearts are all together in this one place.... we love you Michie

Godspeed

Thursday, September 10, 2009 4:08 AM EST

G is recovering nicely from surgery~~we are so thankful that the intense pain appears to be gone....

We have not yet put the plan in place for the next surgery and are taking some respite knowing that Dr Kareem is out of the country.....once he returns, we will get to work on the next step....

recently, I asked for your prayers for the sister in law and family of my dear friend Patty..... I am happy to report that yesterday, she came off the vent.... she has a way to go, but, is improving.... thank you for your prayers

our Michelle continues to struggle with severe nausea, trembling from the medicine being used to try to treat the nausea, and dehydration~~ not just the, uh, I don't feel very well nausea, but nausea that keeps her in bed, or on the bathroom floor, unable to move....she is no longer able to be at work, and cannot care for Grady on her own.... her heart is broken that she cannot stand with her little sister next week as she is married and more than likely will not be able to attend the wedding at all.... her tears fell as she told me how painful it is for her to not be able to care for her little Grady...... Please continue to lift Michelle and Jason before the Lord....

Godspeed

Wednesday, September 2, 2009 4:15 AM EST

5 pm - update

in perfect sync, the sun was warm and bright today, lighting the day which started out with a before dawn journey.... Gary's surgery went wonderful! He was joking with his pal Jason in pre op before they took him and awake when I saw him again....the stent was removed without incident and 98 per cent of the lesions were destroyed! Praise God and lazer.... the surgeon said he is encouraged and thought we made great progress today in this battle~ in three weeks, round two of surgery and a revisit to the urinary system to see how we are looking.... we will cross that bridge when we get there.... G's pain is already better, not gone, but better and tonight we are thanking the Lord for His protection, mercy and touch in today's surgery... I cannot thank you enough for your expectant prayer, your thoughts and messages... I would like to ask that you pray for my friend Patty's family~ her sister in law has been battling the flu and this afternoon, after she sat with me today, she was life flighted to the hospital suffering from sepis and kidney failure.... Please keep this family in your prayers as the quiet of the night falls around us all... Godspeed

early morning.... early fall seems to be making an appearance sooner than usual this year....the air has a certain crispness, the sun is sleeping in a bit later than just a few weeks ago, and the night fall arrives earlier too.... this morning at 5 G and me will head in to the city, down Greentree Hill, through the tunnel, over the three rivers and up the hill to oz....

G knows the painful events that await - the iv sticks - no they do not get easier, or less painful, and no they never get used to them - pre op blood draws, the 60 million questions that it seems by now everyone should know the answers to but they have to ask anyway, the hopefully not so itchy sheets, and the chill to the air of the or... that is where I will leave him today in the capable hands of Sternberg who will look at me and say, I will take good care... and first, do no harm.... I know.... hug, off to work....about then, Ash will be driving to her not in the air job at the bank.... she will call me, and the cell won't work, but then will check her messages where she will find my voice....love you baby, I will call you when G is out of the OR - Mich will be sending Grady off for the day and hopefully find herself feeling better than yesterday....she will wonder what is going on, and my phone will take her message.....I will call you honey and I hope you feel better today... I wish I were there with you today....

G will enter the OR to have his painful and bothersome stent removed....then, the plan of attack to start the battle against the lesions who thought they were hiding from us.... well, we found you little demons.....you of course have no way of knowing that today, we start fighting back.... my friend Patty will met me in the surgical waiting room...she will sit and we will talk a bit....and catch up...Patty helped serve our transplant families on one of our holiday dinners on the 12th floor....she will come armed with G's chex mix that he loves! (her special recipe)

across the country, our prayer warriors will be at work lovingly praying expectantly... talking to the Lord, asking for protection, direction, and thanking God for His mercy in our lives, asking that the physicians have steady hands, and seeing eyes....asking the He might allow us to win today....acknowledging, that all things that come are allowed through His mercy....knowing and believing that all things are possible to a believing heart.....

our prayer warriors, are my strength....I do not have to worry about holding myself up, I know they will do this for me..... thank you for your thoughts today, for your prayers and your messages left with a piece of your heart here on the bridge.... we are confident, we are ready.... let the fight begin...please remember our donor family today and the many who are in the fight of thier life....

I will update later today.... and for now leave our hugs....it is time to get moving

Godspeed

Sunday, August 30, 2009 12:00 PM EST

sometimes, when push comes to shove, I am not so hot at waiting.... so I push, and shove to get results....some may think of this trait as being a control freak... hmmmm, well, that is a learned skill and I do not deny it! but..... with gentle pushing, and a bit of shoving, (from G) we now have direction....

Wednesday G will have surg # 1 in this particular battle with our newest team member, Dr Sternberg...(this will be surg # 40 something over all, I have lost count) They will remove the stent, thank goodness!!! and attempt to lazer as many lesions in the urinary system as possible...... we don't know IF this will work....

in approx three weeks, G will undergo surg #2 with Kareem at the helm...Kareem will attack the lesions that are forming rectally.... then, they will take another peak at the unrinary system to see what results occurred from surg #1

IF it looks good~ we are not yet sure what that means... if the lesions are reappearing (as we know they will sooner or later) we will begin chemo... the type of chemo we will use has never been used at UPMC and unlike tradtional chemo must be delived physically on the lesions... hmmm, the pharmacy is already hard at work to figure out what our mode of delivery will be.... hmmmmm...

not sure what the chemo plan will be ..... it has been used 11 times (at a large Ca hospital) on HIV postive patients... HIV patients and transplant patients have one important thing in common - a supressed immune system.....to the best of our knowledge, this chemo has never been used on a transplant patient... but.... we have to do something, and this is not only the only option we can find, but, the best one so far....

we deeply appreciate your continued prayers, thoughts, and messages.... we will march forward confident in the Lord, confident in our team, and ready to fight....

Godspeed

Thursday, August 27, 2009 9:26 PM EST

another day, no call....

tomorrow it will be time for me to take the bull by the horns.... we are due to see the urologist at 10, next stop, tz..... G needs to have some blood work as his bleeding has increased... I called, no return call

now, my patience has stepped aside...his blood pressure is holding, lower than normal, but holding and G is exhausted...the pain, the bleeding.. it is taking a toll...

tomorrow...., time for action....

Michelle saw the eye specialist today, and will see her doc again tomorrow....we will see what they have to say...

for tonight, Lord protect us, let me make good decesions as we endure the darkness....Godspeed

Wednesday, August 26, 2009 8:58 PM CDT

Michelle recieved fluids, and an ultrasound, and returned home for some much needed rest around midnight or 1a...today saw her doctor who has thankfully, taken her off work...... tomorrow she will see the eye specialist.... tomorrow, some answers, then Friday, back to the doc..... for tonight, she is home with Jason and Grady.... thank you Ash for being my eyes, for being there for your sister, for being there when I could not..... I love you pea pod......

the direction for G has not yet come.... today was long, the pain tiring.... tonight G's spirits were reinvigorated by a South Georgia phone call.... thank you Ken for your kind and loving heart.... for being there, for stepping through the door just when G needed you.... I heard G say, you are still my brother....... soon perhaps G will be able to travel back to his beloved South Georgia....and of course, to the swamp...

hopefully tomorrow, the plan will come together for G, answers for Mich... for tonight, the anchor is set, and we are settling in ~~

tomorrow awaits..... Godspeed

Tuesday, August 25, 2009 9:34 PM EST

tonight Ash is driving from Cleveland to home.. Jason has taken Michelle back to the hospital... she is feeling like she is going to pass out and has lost her vision directly in front of her face.... the optician called her at home and reported that her optic nerves are swollen and lifted and there is edema behind her eye.....Jane, a good family friend is with Grady until Auntie Ashlee gets there..... he is no doubt sleeping safely in his cribby....

G is resting as we wait for direction from Kareem and company.... the pain is on the edge of out of control....
diladid is touching the edge and allowing him to rest off an on....

tonight I need to cut myself in half.... tomorrow morning I will call our coordinator to see what the scoupe is... then, depending on what I hear, will jump in the truck and head west.....

for tonight, I will await a phone call from Ohio.... I am not afraid to say, I am scared..... at the same time, I know who is in control of the ship....

pray for safe passage for Ashlee..... calmness, and quick thinking....patience and calmness for Jason.... protection and comfort for Michelle....direction, a plan for G....

Do not be afraid, for I am with you; I will bring your children from the east and gather you from the west. I will say to the north, "Give them up!" and to the south, 'Do not hold them back." Bring my sons from afar and my daughters from the ends of the earth. - Isaiah 43:5-6

Godspeed

Monday, August 24, 2009 8:28 PM EST

after a very long day in clnic we are back at the hotel across the river from the hospital - a mere 15 minute commute (which translates in to 1 hour Pittsburgh time)

We saw Karis who looks wonderful and Valerie who we have not seen in a very long time~~ she also looks wonderful however, is awaiting the reschedule of her hip replacement which was to have happened today...we saw Greg who looks better than I have ever seen him!

today was a bit on the wild side.... G needed another injection of B12 - ok, done... Dr Kareem had a serious conversation with us today regaring the lesions.... the urinary biopsy confirmed displasia....in laymans terms, an abnormality in maturation of cells within a tissue or, pre cancer....

surgery was scheduled for Wednesday however is now on hold... Kareem needs to think this through, talk with Costa and meet with Dr Jackman who needs to confir with his team... the problem? if they get the existing lesions now - they will come back.....and in the mere act of getting them now, they risk spreading them in the process... hmmmm..... Dr Kareem told me we are sitting on a time bomb......it is not a question of if it is going to explode, but when?

Nick was standing by to put the PICC in.... patiently, and ready he waited....thank you Nick for being there for G and for your patience.... stay tuned....

for now.... we are starting to reduce the steroids to see if letting the immune system come back up a bit will help our cause or create more issues ... we are living in a very complex balance of keeping G's own immune system quiet, keeping the donor immune system from starting a fight, and keeping those precious organs happy....Kareem would like to decrease the FK - the primary cause of the lesions, but...... can we take that risk??? well.... we will see what the docs come up with over the next couple of days... in the mean time~~ Chels is on duty working to help with pain management with the assistance of dilaudid.... Toshie lays nearby not knowing exactly what to do....she is an excelent anxiety manger though...

hopefully we get through tonight with no incident of bleeding.... G really needs some rest...we will cross the bridge of tomorrow when we get there....for now... thank you for your prayers, your encouragement and for continuing to come along with us on Garys Journey....

all things are possible to a believing heart~~

HAPPY 24TH BIRTHDAY ASHLEE!!!

Godspeed

Sunday, August 23, 2009 7:09 AM EST

early morning, Michelle is waking up in her own bed at home with the added help of increased zofran and a trazadone patch which they feel may help calm the vomiting~ I have never heard of that, but..... just pray it helps~~Mich is exhausted and hopefully over the next few days, relief will prevail

G will get another Vanco run today ~~ we are running into issues with finding iv sites.....hopefully the arm is getting happier.... we will see... we will attack the other issues that G is facing as the week unfolds

Yesterday Ashlee and Andrew were given a wedding shower at thier sweet little home....we are all so happy for them as they perpare to join thier lives and become the Ginter family!

today will be a busy one with preperations and last minute stuff before we head back to oz~~ Godspeed

Thursday, August 20, 2009 5:47 PM EST

I peer out the window of rm 324~ the rain falls down the glass, the trees are swaying under the force of the storm that is currently blowing through our little home town...up on the 5th floor, an iv runs delivering drop by drop, infection fighting vanco....I look to the sky, and as dark as it is I know there is a bright spot up there as Ash flies from Orlando.... oh, what a week.....

G has been getting daily iv treatments of vanco which will continue through the weekend....his arm is still inflamed and very painful....our local PCP examined him and immediatly said, he needs more vanco....every day at 4:15 we arrive, iv in, fluids running, pre med to protect against the alergies and harshness of vanco.... 3 days of low dose solumedrol to combat the inflamtion.... seems to be helping

Ash is doing better with her now molarless mouth... suffering from dry sockets, she is back in the air today.... in one more week she will take a respite from the skies and work on the ground for a few months.....I must say I take a certain amount of comfort in that

Michelle had to be admitted to the hospital today.... she is extremly dehydrated from vomiting and not being able to keep anything down....her cheeks are red, her skin is hot... it took 6 diferent nurses before one got lucky and got a 22ga in....

I have never had two kids in the hospital at the same time.... it is a very wierd feeling....Gary on 5 wanting to know where his sister is....Mich on 3 where I will spend another chair night just holding her hand.....

Jason picked up little Grady~ Caley and her Momma will look after him tonight so Jason can come and sit with Michelle for a while and I will be with G.....

the rain outside falls.... the wind seems to have past...perhaps calmness will come to theses storms with the evening sky.....

Please say a prayer for my Mich... she is my athlete, my performer, my baby girl, the Mother of our sweet little Grady boy, and my friend..... tonight it is she is who suffering~~and all I can do is hold her hand, and sit, and watch the rain....Godspeed

Thursday, August 13, 2009 6:41 AM EST

early morning, people scury about wearing the stress of their day like armour... pasted smiles, and courteous chatter.... life, in pre op... Bless them~~

a yellow gown and mask, and lovey blue hat cover G to protect him as he rolls through the maze to make it to pre op for yet another insertion of an IV line....the third dose of Vanco will run while he is in the OR for what is expected to be a 2 hour procedure to remove the STUPID kidney stone on the right side.... the other two which are hidng out, or so they think they hide, in the kidney~ well, we won't worry about them for now.....

Ashlee was doing well last night after having 4 wisdom teeth removed... my heart was heavy because I was not there with my baby for her surgery... Andrew, bless his sweet heart took great care of her.... my girls have paid the price in more than one way, and more than one time .... they know my arms are around them, even when I cannot be there when I need to be to take care of them, but, it is not the same as holding them in my arms, sitting with them... you know... to put the cool cloth around Michelle's neck and love her through the nausea she is currently enduring, entertain little Grady to keep him busy and quiet for his Momma who loves him so much....sit with Ash and just run my fingers through her hair... and pull her eye brows.. a long running, personal expression of love...and source of comfort...God how I miss them....and miss giving them popsycles to make it all better....

G is still struggling with his arm which is so excruciatingly painful that it is hard to believe that just two weeks ago I brought him here feeling better, looking better, BETTER than he has ever been in his entire life....since then.... infiltrated iv's, careless blood sticks which brought with them the arm problem.... kidney stones.... and as of Monday we learned that those pesty, IRRRRRRRRRRRRRRRR lesions have returned.... he is back on treatment in a gallant effort to quiet them back down....while at the same time, surgery has already been set for the 26th....

once I get g back to hotel transplant, I will need to make some phone calls, then, try to determine if we are going home (real home) tomorrow, or maybe Saturday... I know Kareem wants to see him tomorrow as he is worried about the arm and despite thier efforts, it not getting better.... I need to find another hotel for our return, well for us now if we cannot go home - the hotel is over booked and the "regulars" will pay more for our room than we do at our hospital rate... the G20 Summit is coming to Pittsburgh and our room at hotel transplant will fetch 299.00 per night for them during that time... now THAT IS HARD FOR ME TO BELIEVE! Who would, who could pay that kind of money.. anyway, all hospital rate people are out~~ hmmmm nice.... is life really all about money???? hmmmmm

well... as I observe the people around me... again I can easily tell the rookies from the been around the block a few times folks.... the nervous chatter and meaningless conversations that go on in surgery waiting rooms hums through the air.. I wonder what they are thinking as I sit here with my laptop, typing away these words that today make up our life...

Lord... please protect G today and bring him comfort... guide this Dr Sternberg as he seeks to find and remove this unwelcome quest... protect him from infection, and provide relief from this pain.... your mercy astounds us, and we are humbled and thankful for your love and forgiveness Amen

Ash, Mich... I love you both so very much.... you are in my arms this morning as you are everyday, with my every breath.... Godspeed

Monday, August 10, 2009 12:31 AM EST

this update is coming live and in living color from the transplant clinic..... well, maybe not in living color~~

here is the latest and the greatest..... the one kidney stone has turned in to three... one on the right, two on the left... so, asof today...add some meds to try to get rid of the one on the right....then if by Wednesday, it is still not gone....surgery to go in an get it.... OH BOY~~

the right arm... ok, well, after three infiltrated iv lines, we had what was believed to be a blood clot in the upper arm, or shoulder..... now, following a dopler ultra sound, don't think that is the problem... so, the question is, what is the problem... well, cold be cellulitis.... we shall see.... if that is the case, then we will need to start IV Vanco.... the verdict is not in......Kareem is in the OR so, this, long story short~ is going to be a very logn day......

will update later... pray for Kareem as he, and probably Costa work in the OR to save a life.... Godspeed

Wednesday, August 5, 2009 11:23 PM EST

captins star log~~ entry #.....hmmmm

Dr Kareem once said to us, stay away from the hospital, stay away from doctors~ they will kill you! Well.... I am a believer....

G has been progressing through his check ups.... the urologist - some monitoring to do... but.... ok

the BIGGEST news so far - NO BRAIN TUMOR! (real or pseudo) so we don't know as of yet what is causing the severe migraines, but, we know what it is not.... thank you Jesus for your mercy

G had biopsy today, from the top(endo) and the bottom (flexy)He awoke with much pain on the right side... uh oh... I warned Dr McGraf- proceed with extreme caution....it makes me very nervous when Adam is not at the helm....well, some dilaudid, after three hours of arguing about it....and back to hotel transplant.... then, a nap suddenly interupted by severe pain.... a quick call to Kareem and a rush to the ER~~ the fear, perferation of the intestine... OMG are you kidding me???? he was fine this morning, just ate Louisana crawal fish for dinner one night ago.... (yeah I know, yuck) After an urgent CT, a type and cross, a call to Costa, and an OR on hold the findings reveled kidney stones.... there is an obstructing .2cm stone lodged just north of the ureteral vesicle junction (bladder for rookies) Thankfully, the intestine and other organs appear to be ok...happy and safe... thank God.. I am feeling quite sure I could NOT endure another puncture of the intestinal track.... thank you Dr Ngan for being there to intrepret this study so quickly for us....

for tonight, pain management, monitoring temp as we try to hold off infection... then tomorrow back to consult with urology... did I mention that Dr Jackman had the nerve to go on vacation??? well, the transplant fellow believes they will need to go in there and grab that stone....

I will worry about that tomorrow....thank you to our prayer warriers....without you I would loose what little is left of my mind...

sleep well, sleep quiet... no temp... please...Godspeed

Sunday, June 14, 2009 7:54 AM EST

CONGRATULATIONS PENS!!! STANLEY CUP CHAMPS 2009!!!

this year as last we watched every moment of every game!

G made it through finals, thank fully with only 1 major headache... he got his grades on Friday ~~~~ A IN MATH!!!! English was a pass/fail - he passed and Soc...sill waiting for that grade (not posted yet) CONGRATULATIONS G!!!!

this coming week I will be putting the plan together to take G to oz so we can get a look at whatever is going on in his head...we confirmed with the eye specialist it is not glaucoma.....so that leaves Kareems idea of pseudo brain tumor.. I will be setting him up with the bone doctor, the back specialist, and the urologist as well... one stop shop...hopefully everyone can see him in the same week and we can head back home.... Please continue to keep us as well as our extended transplant families and our donors who make all of these miracle lives possible, in your prayers..... while some of us may currently be standing on the shore for now, we are never really out of the water..... Godspeed

Tuesday, May 19, 2009 10:43 PM EST

as Memorial Day approaches and we make the lists of things we need to acomplish over a long weekend.... maybe you can carve out time to do a little reading....and, say a prayer of blessing for my cousin's daughter Michelle as she celebrates her wedding this Saturday in Columbia, South Carolina!

If you want to read a good book, written as only could be done by someone who has really lived life - find "A Tender Warrior"~ written by Lieutenant General Hal Moore who is a military hero, accomplished author, and national speaker on leadership. In this book he shares his letters to America with passion and wisdom~ take some time, invest in you and read this book....

Gary is nearing the end of the spring quarter and has been working hard at his second attempt at math, researching and composing papers and taking exams.... the plan is to take summer off and hopefully get in his first "accounting" class in the fall.... we will cross that bridge when we get there... we are appealing his financial aide yet again so say a little prayer for us as we do this... he needs financial aide to return to school in the fall... I refuse to have anything other than positive vibes~~Gary has completed an excellent paper on Jimmie Johnson.... I think even he would be impressed....

G is adjusting to his new glasses.... Dr Kareem has decided we need to return to Pittsburgh to let him have a closer look at this glaucoma.... he is concerned that it is not glaucoma at all but rather a pseudo brain tumor that is mascaraiding as glaucoma....sometimes the body plays tricks on it's self... tricks on us~ the captive audience....G has been on a high dose of steroids since his transplant.... the steroids are doing the job they need to do that G's body can't do on it's own... this comes at a cost.... it is quite possible that this current issue is in part due to the steroids and may be the root cause of the horrible headaches that G has been enduring....but at the same time, it is entirely possible that the steroids have nothing to do with this.... Dr Kareem does not want G to have a lumbar puncture (spinal tap) but at the same time does not want to treat for psuedo brain tumor without a "for sure" diagnosis~~the only way to really get a for sure is lumbar puncture.... OUCH.... irrrrrrrrrrrrrrr

it just so happens that I know someone who happens to be excellent at lumbar punctures AND has already agreed to let G be asleep for this procedure IF it is determined that this is the route we need to take to ensure that we are doing exactly what G needs...... it reminds me of the title movie that is out currently... angels and demons.... miracles and tragedy... miracles that out there in the big ugly world of hospitals, there are still compassionate angels who walk among the demons of illness.... tragedy? that we must learn to be such informed advocates ....

well... this weekend, remember Michelle and most particularly her Momma Kathleen as she watches her little girl walk down the aisle.... and read the book....Godspeed

Sunday, May 10, 2009 8:40 AM EST

Mother's Day~~ as I sit this morning seeing the much welcome sun rising (we have had nothing but gray skys and rain recently) my mind runs along the pathways of my children....Ash has grown and her life is blossoming in so many ways just like the garden she is so lovingly caring for this year... she is smart and beautiful, compassionate and not afraid to let explore~Ashlee is a gifted and acomplished cook! I think of her, my little girl up there at 35,000 feet; her office as she calls it, and I just cannot believe everything she has become and all that she can do....

Mich's life has changed in the most dramatic way since little Grady was born...Michelle is talented and beautiful, smart, compassionate and can do almost anything with any animal... she is such a wonderful Mommy and it melts my heeart to see her with Grady and see his little eyes dance when he looks at his Momma~ he toddles over and hugs her legs....she pats his little back....my little girl, with a little guy of her own.....

Gary... how far his life has come~~ he told me about his classmate who picks on him because he is small...when I look a G the last thing that would come to my mind is small...G continues to work hard in school, work hard in life...G can tell a story like noone else I have ever seen~he tackles life with an energy and excitement that many BIG people will never acomplish, even if they really try...G has come a long way; light years! both in his health, and in his life....he has a compassionte heart~~his classmate has never seen anyone as BIG as G.....maybe one day he will be smart enough to know...

Being a Mom....lifes most high honor.... I would not change a thing about my kiddos....well maybe with G, I would take away the pain, the suffering that over his life he endured somehow keeping his amazing spirit in tack...but in saying that, would it also change who he is? Who they are, the lives they are leading, the people they touch.... I would not change a thing....I am in deed, so very blessed that I was chosen to be thier Momma.... Happy Mothers Day~~ Godspeed

Thursday, May 7, 2009 9:12 PM EST

another migraine that we cannot get ahold of, another night in the local ER~~ Dr McCann is here tonight, thank you God... not some idiot that I will have to fight with~

this migraine hit about 5 pm... no luck in getting ahold of it, so here we are before the vomiting hits~ hopefully this is a quick dose of dilaudid and out of here....but, probably not...

I look around as I always do as it always interests me what brings people here.... a couple of really sickies, throwing up and looking green.... a girl with really red hair tied up in pony tails, a guy with a dirty white hat, a kid with a twisted ankle~ a couple of girls from the local college who really look jsut fine to me (?),an older guy in an orange hat looking like he is not sure what to do with himself.... and then there is g... with our cute little 95 mask to protect him as best we can from whatever lurks here.....

this week our dear friend Marylyn who has supported us, prayed with us, prayed for us, prayed for many who we have asked her too who she does not even know, lost her life long partner Marvin~~ he has been sick that last few years and Marilyn has been right by his side each and every day.... unconditional love.....Please pray for Marylyn and her family as they endure this loss.... this is a family of God... Marvin is home......

G is adjusting to his glasses....about two weeks ago we recieved the diagnosis of glaucoma in both eyes... more tests are required to tell us what stage we are at and at what speed we should expect it to progress....glaucoma...another cost of surviving transplant... we are trying to cut the steroids and have made it down from 35mg 3 x per day to 20 mg 3 x per day.... not far enough, not even close... but, progress.....the rib is healing slowly and is still painful.... G has decided that he will finish this quarter at school and take summer and fall off... then, head back in winter quarter~ he just needs a break....job well done...

well, I hope that this will be a quick dose of diladid adn out of here... but I am as sure as I am that I wish we were not here among all the bugs, it will be another long and sleepless night...but that is ok....

sleep tight~~ Godspeed

Tuesday, April 28, 2009 6:03 AM EST

we gathered to cook outside on the gril in our slowly recovering garden and yard..... being away for so long, and having the house as a rental, well, it really took it's toll....but at the same time, kept the house payment going for the last year of our time in Pittsburgh~~ as Dr Costa said long ago, it comes at a cost.... I am not sure, no, I am sure, he really has no idea to this day of the depths of the words he probably does not remember speaking.....

speaking of costs..... Gary is recovering from yet another broken rib.... same side as last time when a rib was broken during an endo as he was turned and positioned on the table.... this time, walking the dog....Tosha who has a love for large trucks pulled on her leash~of which she knows better but temporarily lost her mind~ and with a simple POP, a broken, and very painful rib..... a day in the ER spent with Dr Neuenschwander (the wonderful ER Doc who covers in our local ED from OSU Transplant Team) confirmed no puncture to lung or liver.... thankfully, just a painful healing process..... with G's bone condition, it may take some time....

Thank you for leaving notes for G and me here on the bridge.... our hearts smile each day as we read your greetings~~ Godspeed

Sunday, April 26, 2009 1:02 AM EST

Yesterday marked four years post transplant…. Re birthday, life post miracle….

I can only hope that our donor family has peace, and comforted hearts….. I cannot imagine their loss…..their ability to do what they did….love, no other description, love……

Tell the ones you love that you love them; go for a walk in the rain….. treat today like there is no tomorrow…… always hope, and never let go~~

Godspeed

Sunday, April 12, 2009 7:34 AM EST

the sun is rising as I listen to the stillness of a still sleeping G~ it is Easter, most victorious of days, and we are home.....

our home sweet away from home, Pittsburgh is never far from out minds or our hearts.... so many we love are there, quiet heros are there, brave warriors are there, and the lesson of miracles and tragedy are there... this past week we watched online as Pittsburgh lay to rest three police officers who earned thier angel wings while simply doing thier jobs.... as we watched from Ohio, it occurred to me that many times we watched events happening here from there and somehow seeing familiar sights brought home a bit closer....this time we watched with saddened hearts as the familiarity of Peterson Event Center, the overhead shots of UPMC, streets and bridges brought our home sweet away from home a bit closer~~ God Bless each of these families as they now try to find thier way without these men they loved so much....

today we celebrate VICTORY! Who would have, who could have ever known that one single man, one life would change the world forever and give us hope.......Godspeed

Matthew 28:1-10
After the Sabbath, at dawn on the first day of the week, Mary Magdalene and the other Mary went to look at the tomb. There was a violent earthquake, for an angel of the Lord came down from heaven and, going to the tomb, rolled back the stone and sat on it. His appearance was like lightning, and his clothes were white as snow. The guards were so afraid of him that they shook and became like dead men.

The angel said to the women, "Do not be afraid, for I know that you are looking for Jesus, who was crucified. He is not here; he has risen, just as he said. Come and see the place where he lay. Then go quickly and tell his disciples: 'He has risen from the dead and is going ahead of you into Galilee. There you will see him.' Now I have told you."

So the women hurried away from the tomb, afraid yet filled with joy, and ran to tell his disciples. Suddenly Jesus met them. "Greetings," he said. They came to him, clasped his feet and worshiped him. Then Jesus said to them, "Do not be afraid. Go and tell my brothers to go to Galilee; there they will see me."

Saturday, April 4, 2009 9:31 PM EST

the final 4~ g and me are not huge hoops fans until the tourneys.... then we get in to it.... Michigan State won today (hey Bud, how cool is that???) now we are cheering for NC(I have always liked thier uniforms~~ haha) It is always amazing to me to see college KIDS and how giant they are... how do parent of kids who grow in to such GIGANTIC people ever afford those GIGANTIC SHOES???

well.... the week has gotten better for G~ headaches under control and able to be back in class.... thankful hearts.... we are nearing the mark of year 4! Just 21 days away.... it is all still overwhelming to know that the improbable, the impossible, became the possible... I think of our donor family and wonder what is going on in thier life today..... and wonder if they wonder what is going on in G's life, the life that he has becuase of them....today...

Please continue to pray for Maria, Jessie, Karis... for all of them.... for G~~

GO NC!! Go Jimmie! Go Jeff!

Godspeed

Tuesday, March 31, 2009 10:52 PM EST

the first day of class started with G excited as he headed out the door, anxious to get started on his new classes~upon arrival he discovered that his classes were not scheduled...the day was spent running all over campus, making corrections, stopping by the deans office, getting authorizations signed and at long last, everything in order~~ then it happened, in the middle of writing class~ sudden onset migraine, with vomiting.....

once again, G was under the hand of the protection of the Lord....I have no idea how he drove home.... I stayed with him on the phone, offering to just come and meet him, leave the truck somewhere and bring him home....he kept on driving, talking, stopping to throw up...then driving....on the other phone I had Theresa in the land of oz and she had Kareem..."once I get him here Kareem, and I can see him, I will know what we are dealing with" ~ at long last, the truck drove in, and I along with Theresa and Kareem went to gather G from the truck..... the plan, head for the ER~ the obvious worry, a brain bleed...no Kareem I really think this is sudden onset migraine ~ the plan~ iv dilaudid and zofran....okay, call us from the hospital~ will do

I have never seen the ER in such a quandry! no seats anywhere, the police there apparently following an accident, a very sick little baby - maybe two years old~

after calling Ash and Michelle and waiting an hour, I called Michelle to brainstorm... I think I know what we are dealng with, but what if I am wrong? should I just head for Pittsburgh? hmmmm, good idea, call Kareem, ask him to call the ER and tell them G needs to get in.... just then, they called us back... to my great dismay, the doctor in charge was what we in transplant land fear most when we are out of our comfort zone, a "hero" doctor~

not only did he not make eye contact, but did not believe that Gary had recieved a stomach...oh yes, I must be mistaken.... hello? He then assured me that he has been a physician for many years and has seen "this" many times....with all due respect, sir, I can assure you that you have never seen "this" before....so let me explain how this needs to go and we can spend the night quibbling over who is all in power here or we can address the issues at hand and get this problem under control~~long story short, at 3:30 am we arrived safely back home after numerous calls to Oz, and a not so happy ER attending, 2 mg of dilaudid, reglan and zofran on board...today has been a day of sleeping for G and an exhausting day of work for me...I have awakened G for food, drink and meds...otherwise, sleep... BP ok, color ok, maybe a little red, but another night of sleeping close by, just to be sure....

"First do no harm" kept running through my mind last night... I am thankful for Theresa and her ability to help me keep a potential dangerous situation with a hero doc under control... I am thankful that we are at home.... we will see what tomorrow brings...when tomorrow arrives.. for now, hopefully some much needed rest...Godspeed

Wednesday, March 25, 2009 8:00 PM EST

today I got my books for the new quarter that I will start on Monday. I was very sad to find out that I am on academic probation again becuase of Math - no financial aide for this quarter - this quarter I will work hard in Socialogy, yet another writing course and computer Math... I pray I can improve. I did get a A in my last writing class but oh that math...it is so hard to keep everything straight in my memory.

Spring is coming and I will be glad to see the cold weather leave. My back and joints do not like winter at all. I am working on cutting my steroids to 25 from 30 three times a day. I know it does not sound like much but with any slight change to the steroids I am no longer hungry and cannot stay awake. But if I get sick again with another infection the steroids work against me and they are helping to destroy my bones even more.

I feel good and I am happy to be going back to school for the next quarter. Mom had to, well she did not have to, but she did some serious money crunching to allow me to be in this quarter since I have no financial aide until I reach 12 credit hours. That should happen this quarter if I can just remember and keep everything straight. Steady as we go....

Please pray for my pal Maria...things are not so good~ and pray for Karis too~ it looks like she is going to need another transplant....Godspeed

Wednesday, March 18, 2009 9:40 PM EST

sometimes it is hard to make everything that makes no sense, make sense... and sometimes it makes more sense to understand that some things just don't make sense and maybe that makes the most sense of all...

while attending the calling hours and life celebration for Uncle George (an avid gardener and wearer of smiles) we had the joy of seeing some dear friends and meeting friends from California who have been with us on the journey for a very long time...it was a joy and a pleasure...Please continue to pray for the Curtis family as they endure these very difficult days... thank you so much for the notes and prayers we have recieved...Bless you~~

Gary made it through finals.... writing went great, math not so great... one of the complexities of transplant is the cost of memory and the ability to keep things like process's and events straigt in your memory which just does not work so well any more (in this case, math process's in particular) Math will be a repeat next quarter... but that is okay~ G continues on the antibiotic and looks better today

Please pray for Karis.... she is truly in a dangerous place and fighting so hard to find her way back....pray for her Momma Debbie as she endures and fights the battle along Karis's side...

one of the things that I so wish you, by reading these words that flow from my heart, could make sense of would be for you to able to know what a difference your prayers make....how much we all depend on the power of prayer and the Mercy of the Lord ~ in all the things that make no sense, prayer always does.....Godspeed

Monday, March 16, 2009 4:48 PM EST

thankfully we are home... another month of antibiotic and hopefully that will do the trick... G is tired but glad to be home and able to take his finals tomorrow....pray for clarity of mind for him and that he will not fall asleep

We came home only to learn that Uncle George earned his angel wings...pray for my Aunt Fran, Deb and her family, Lori and her family, Pam and her family, and Donna and her family as they say good bye for now to Pappy...

I also learned that my cousin Lynne is in Riverside doing battle with cancer... pray for her that the Lord would comfort her and encourage her as she battles on...

Plese keep our South Georgia family in prayer as well.. Stephanie continues to have issues with her heart (which by the way is a heart of pure, beautiful gold) and Sherry, Kev's Momma is caring for hubby Ralph who is recovering from surgery...and had a coly done herself....

so much going on... but His hands are on the wheel of the ship..all things through Christ who empowers....Godspeed

Friday, March 13, 2009 9:23 AM EST

as the quiet of the night fell over us yesterday G and M were making our way through the woods and over the three rivers back to Oz~~

we arrived at the hospital at 6:30 am for Head/chest CT and blood work... IV is in place for more Vanco if needed and fluids.... holding for the lab work and CT intrepretations....

Angie is here, Jess is here, G is here... Karis sadly is back in rejection.. please pray for her and Kareem and company (direction and wisdom) as this is a painful, dangerous fight that she is in the midst of...

will update on G later today... Godspeed

7:53 pm back at hotel tz... ct's look better, some slight med changes, and we will take another look tomorrow... so far~good news... Godspeed

Wednesday, March 11, 2009 4:57 PM EST

for most of us, the average joe so to speak... getting through the day is not so tough...oh yeah there are always some issues, no gas in the car, leaking water faucet, can't find my shoes, where are those car keys???

G is struggling to complete his writing course this quarter... hopefully he can find the energy tonight to finish his paper that is due tomorrow... math, well he is trying to hang in there with this class that is already difficult, but being sick is making it harder as he has already missed one class.. hopefully he can make it to class tomorrow... the next week will be finals.... our friend Karis struggled so hard to complete her education...these guys just struggle.. life is not easy... but with an amazing spirit and determination, they keep working at it...

thank you for your prayers... Godspeed

Monday, March 9, 2009 7:41 PM EST

All the art of living lies in a fine mingling of letting go, and holding on ~~~ Henry Ellis

I brought G home today (thank you Kim for your ability to trust me to move the day around to meet the demands that I must meet at the moment and keep breathing) and I am not sure who is happier, G or me? Probably G since we don't utlize needles at home any more.... we are trying yet another antibiotic as our problem still exists but we are maxed out on the Vanco... thnxx Deb for your suggestion of Avalox... Kareem gave us the go ahead and first dose is in! G came home with as he calls them double feet! His feet and legs are swolen and we (Kareem and me) think this is due to IV overload... our local hospital fearing dehydration ran the fluids 24/7- good idea, but this time, hmmmm, maybe not so good an idea... it is a fine line we walk... G is doing his feet and ankle excercises while trying to stay awake to hopefully get that fluid moving! We will see how he looks tomorrow, and have another phone conference with oz!

letting go, and holding on..... perhaps they are one and the same, just perhaps from different angles....just a short year ago, Baby Grady arrived to our arms which waited to hold; and Kevin took flight as his Momma had to let go~~the time has past quickly, slowly...all at the same time and Grady is learning to walk as his Momma lets go~ Kevin occupies a place where he will always be, as we all learn to hold on~ hold on to the memories, the smiles, and things about life that he taught us....one of those things was the art of letting go~~ Godspeed

Sunday, March 8, 2009 9:57 AM EST

after a night of much needed rest I returned to the hospital finding my self almost in a panic wondering if they have pulled blood work to check BUN, Creatine, Nuetrophil, HH, Bili.... and would they know the warning signs.... I have learned that is not customary for a pt or caregiver to view the blood results here in our local hospital.... of course, that makes sense to the average patient and family to whom this garlbalish would mean absolutely nothing... to me however, these numbers tell me how G's body is tolerating the Vanco, and allows me to breath......Jess our nurse understood that I am worried about G becoming nuetropenic, or of rising BUN/Creatine, and what is that bili doing anyway! To my relief, the numbers from yesterday looked good....thank God... G's red face is already making me want, NEED to see today’s numbers which are not back yet....

some may say, you know what, it may not be so good to know so much.... but....to the contrary, as a caregiver to such a complicated and fragile body, it is my belief, as a matter of fact, the simple truth that I cannot know too much... I have to know what is going on and how G's body is reacting so I know if we are making progress or opening an unwanted door to an unknown path....for now, we are good... today I will ask that the dilaudid be lowered to .5 q 4-6 prn... right now it is 1. q2 prn... unheard of in transplant land... that party is about to come to an end... bless our doc and nurses here for wanting to stay on top of the excruciating headaches and pain associated with this infection... however...... a sleeping intestine is not exactly my idea of a good time so.... .5 q4-6 prn...end of that story.....

today in particular our South Georgia family is on my heart.... on Tuesday we will celebrate the anniversary of Grady's arrival! HAPPY FIRST BIRTHDAY BABY! at the same time, we will have heavy hearts as the first year has passed since our beloved Kev earned his wings..... Pray for our continued journey, direction, safety, cautiousness, and for our South Georgia family as this very difficult day arrives.... Godspeed

5:25 pm - G is developing some sort of little red dots, pin points all over his body.... not red man syndrome... but what? will keep a close eye on this.... the horrors of graft vs host run through my mind....not to panic....if by tomorrow this has not resolved I will call oz.... take no chances~~Godspeed

Saturday, March 7, 2009 3:35 PM EST

Just when we need it most we are given the gift of a sneak peek of spring! The warm air renews our spirits worn down by the long winter~ the baby blooms now peaking out give us hope and the now forming buds give us the ability to simply believe~~

Last night while almost sleeping in his recliner, I noticed G’s face growing red…him, looks like the Keflex is going to need some reinforcements to kick this infection in the kester….sure enough, his temp was climbing… with Grady sleeping in his cribby, (Momma and Daddy were enjoying a quiet dinner out with friends) my call went out to Bridget in the land of oz~ with my plan firmly in place and Kareem’s approval for my action plan as he and Costa were heading in to the OR to do a transplant; we headed to our local ER (Grady boy had to be rescued by Momma and Daddy-sorry kiddos)

As fate would have it, although I am no a believer of fate- I only believe in on purposes- our ER Attending at our little local hospital was from OSU and you guessed it- a transplant attending there! He was very nice and was not upset or surprised to hear that nothing could be done without the blessing of Kareem and Costa~ our plan- head G off to sinus CT and chest XR while I call Kareem on the cell – proposed plan of action – IV Vanco, premeds, trough after 2 doses~ Kareem approved with strict instructions that NO other meds or actions were to be taken without his approval, yes Kareem, I know… and as I headed back to talk with our ER Attending and deliver Kareem’s blessing; Kareem and Costa headed for the OR to do a transplant… another long night, and long day for the team, this family, and prayers to the donor family who were on an entirely different journey~

G was admitted to our local hospitalto a room with a window that faces west- (the sunset will be amazing) under the care of our local PCP (thxxxx doc for being brave) who is piloting this ship under the guidance from the Captain who he has never met…. The nurse on the floor was apprehensive but, after some conversation felt much more at ease with G’s complicated body~ the day nurse has been wonderful, thank you Jessica for working thorough the complicated med list and complex administration schedule!

G will remain in the hospital here in Ohio for an estimated 3 days… as long as he responds well to the Vanco (which by the way he is highly allergic to) – the back up plan – head for oz…. thank you for your prayers…. Godspeed

Remember – spring ahead tonight!

Wednesday, March 4, 2009 7:53 PM EST

tonight we are battling yet another respitory infection, sinus infection, and sore throat... thank you Doc (local PCP) for getting G in today and again your patience wtih the cell phone conference to the transplant team... with any luck, the antibiotics will get ahold of this and we will be okay....if not better in a couple of days, off to Pittsburgh we will go...We are looking in to trying a new dressing to try to get G's skin around his incision to heal...as you may remember his wound would not heal afer transplant and then two years ago when we suffered that horrible bleed Dr Kareem removed all that damaged tissue only for the same issue to rise again... the new "dressing" for anyone who is interested is the Oasis Wound Matrix. I found it be researching the internet, then talked to Kareem about it, then finding nurses that are currently using it for 2nd degree burn patients, then, reporting back to Kareem. He or someone on the transplant team, set up an in service. The great debate goes on as part of the "magic" of this treatment is that it contains small intestine submucosa (SIS) material. We need to be sure that this would not cause any unwanted reaction to Gary's extremly complex system. We will see if he would need to go to the OR for the area to be prepared or if we would just apply the process as we are today. We will see how this shakes out...for now...we fight this crud that apparently is going around...and hopefully, remain home in Ohio.....

Please continue to pray for our many, extended transplant families who fight the fight and our South Georgia family during this difficult aniversary period of time... Godspeed

Friday, February 27, 2009 8:35 PM EST

Vivian is a friend of one of our extended transplant families in California~ this letter is from Vivian, it is a plea from a Mother who is trying to save the life of her daughter- if you cannot donate a kidney to save Shelly, you can copy this message and send an email to everyone you know and ask them to forward to everyone they know… Godspeed

Dear Friends,
Hello, my name is Vivian; and my husband Rob and I have a wonderful daughter
named Shelly. When Shelly was 12, we were told she had kidney disease. We took her to the Cleveland Clinic where they monitored her with visits for the next 7 years until in 1990 her kidneys stopped working completely and on June 1st I gave her one of my kidneys. It has served her well until two years ago when it failed. She has been on dialysis since.
Shelly is married and they have a wonderful eight year old son, Ethan. She has had a rough two years on dialysis and it is taking a toll on her. Ethan should have his Mom, Matt his wife, and us our daughter.

We are mounting a campaign to help her. The doctor's said out of 100 people one might match. So we are trying to find the needle in the haystack. As you can see by the story below, if you aren't pro-active in your search for a donor, none will be found. 18 people die on the list a day. PLEASE HELP us. We need as many people as possible to hear her story and consider the gift of donation of a kidney. The operation is so much easier now than when I did it and only requires 2 small cuts into the tummy and a shorter recovery process. I have lived fine with only one kidney; in fact we only need one. Living donation costs you nothing. Shelly's insurance picks up everything and Matt and Shelly are willing to cover lost
wages. The first test is literally only 3 small tubes of blood.

What can YOU do? As you can see we need the word out to as many people as possible. I see emails with hundreds of forward address on them when I open them. Let this be one on them and FORWARD to anyone and everyone. Would you consider being our hero?
To be considered as a donor you must have type A or O blood, be between 19 and 60, have good blood pressure without medication.

For those who would like to ask me questions about donation please contact me at vskladan@yahoo.com - I can't wait to hear from anyone willing to help.
If you just want to let us know how many forwards you gave this story let me know that too. If you need additional information on becoming a living donor please check out:
http://www.umm.edu/transplant/living_kidney_donor.htm

By the way, 100 Donor campaign - 96 more people to go! Thank you, Thank you, Thank you to those four people willing to be tested.

It takes a village... Godspeed

Friday, February 13, 2009 6:30 AM EST

Pray today for the families of the passengers and crew of Continental #3407 which went down last night near Buffalo~ may God cradle them and comfort them in the horrifying days that will come...

Ashlee, thank God for His Mercy and Protection was safe on the ground at home~~ Godspeed

Saturday, February 7, 2009 6:57 AM CST

"The smoke from the incense went up from the angel's hand to God" (Rev. 8:4). Incredible. Our prayers on earth activate God's power in heaven. Our words do not stop until they reach the very throne of God. Prayers move God to change the world. It may be that we do not understand the mystery of prayer; but we don't need to. This much is clear: Actions in heaven begin when someone prays on earth. What an amazing thought! from Max Lucado

Gary is doing well... he is working hard to survive his current math class using tutoring and dvd tutoring and keeping up with his writing~ this last week we grew very concerned that he was developing a blood clot in his finger, however, whatever was turnign his finger purple, is now subsiding...mysteries~

just a little update, Maria is home with her Momma and sweet little Bella! She has a long road ahead and intensive home care, but~ Maria is finally home....

thank you for your continuing prayers~~it is only through the Mercy and Miracles of the Lord that we continue...Godspeed

Saturday, January 31, 2009 6:37 AM EST

SUPERBOWL 43! Steelers vs Cardnals! Wow what a billing!

the last time the Steelers went to the superbowl we were in Pittsburgh and G was 9 months post transplant and working hard to learn to eat and expand his food horizons! We gathered at the Waterfront with Maria, her Momma and Bella, and Sherman (tz pt from Philly) to cheer the Steelers to Victory! I could not help but feel that the gridiron battle was somehow relfective of the battle going on in that very room~

This Steeler showdown will be amazing as the coach for the Cards came from Pittsburgh as well as the defensive coordinator~both vied for the job as head coach of the Steelers but, that was not to be... This Superbowl takes place as we are at home, in Ohio....for which we are so thankful...in the struggling economic times that our country; so many families are in and facing, we all need a break from reality~ the Superbowl comes just in time to provide a tiny time of relief~

Maria~ as you continue to struggle and fight the fight we hope that you can watch at least a bit of your beloved Steelers!

as I write this note, if only those giant Steelers knew how they impact the lives of so many who relate their own personal struggle and fight to the one that happens on the field...GO STEELERS!!!!

Godspeed

Thursday, January 22, 2009 7:43 PM EST

we are reminded that miracles and tragedy walk so closely, hand in hand...Please pray for the following with great expectation...

9:00 am Friday Morning Jan 23 - dear, sweet Maria will go to the OR for Kareem and Costa to clean out her stomach. There are blood clots in there which are causing great pain, putting her blood pressure to reach levels of danger~ Please pray for comfort as Maria undergoes this belly wash as we in tz land call it, and for God's hand to cover Dr Kareem and Dr Costa as they work. Ask the Lord to surround dear Susan, Maria's Momma as this delicate procedure takes place...

Karis - please pray as Karis continues to fight her way back and Kareem and company fight to get her on stable ground, that her bedsore can heal, that pain can dimish and Karis can be safely delivered from the valley's she has been fighting her way through...

Gary is recovering from e Coli UTI. Pray that the antibiotic gets all of those nasty little bugs before they can cause big time trouble...Gary is continuing in school and took his first math exam today...may the Lord allow him to continue in his effort...Godspeed

today my Mother had her coloy done at our local hospital and did very well. No complications, thank God and only one little polyp to be removed... we met a lovely nurse who's sister is suffering from multiple gastrointestinal surgical procedures and now has a non functioning intestine and stomach... we were able to give her the phone number to Dr Kareem... may God lead them....

there is no real upate on Jason except for today he feels a bit better... we still wait... keep Jason, Michelle and little baby Grady in your prayers...

in the last few days, I read an email from Kelly's Momma (Ohio)... Kelly was pretransplant after loosing her intestine following a gastric bypass~ Kelly earned her angel wings Jan 15th leaving her two daughters to be raised by thier Grandmother... lift this family before the Lord who always keeps His hands on us, even on the most dark of days, as they endure this pain and somehow try to build a life together, knowing that Kelly now has a perfect body, and is with the Lord

Godspeed

Saturday, January 17, 2009 12:06 AM EST

today history is unfolding all around us.... the newly elected President and his family are riding an Amtrak to Delaware, where Joe Biden and his family will join, along with his long time Amtrak conductor and his family, and then on to Baltimore, and then on to Washington DC... where over the course of the next few days, history will in deed unfold.... in the words of Martin Luther King Jr, you don't need to see the entire staircase, just take the first step~~ Pray for our newly elected leaders as they begin a journey of unprecented challenges....

more history ~ last night the temp (actual air, not wind chill) fell to -26 degrees......enough said~~ No doubt you have heard about the successful ditch landing of US Air in the Hudson River...Captain Sully and crew, all heros saving so many lives in the first ever successful water ditch ...Grady is getting his 5th and 6th tooth....all while playing with his blocks and little trucks and making music on his activity table and dancing (new photos coming soon not that I have figured out my new camara that the kids gave me for Christmas.... Gary is enduring the cold, missing school again last week to avoid exposure to the sub -0- air....the cold is hard on his joints...

Please pray for Mich and Jason.... Jason has not been feeling well for the last two weeks...a visit to the doctor, an MRI and the wait...

Maria was moved from Cleveland back to Oz (Pittsburgh) at 3 am and back in the direct care of Kareem and company....Maria is extremely ill and in need of our immediate, expectant prayer... Please pray for her Momma Susan, for strength, for comfort, for direction and peace... also remember Karis and her family, also fighting in Oz, she too, seriously ill... Kareem, and Costa....always in our prayers...Godspeed

Sunday, January 11, 2009 2:45 PM CST

Happy Birthday Kevin! Happy birthday Keith! It is hard to believe that Grady is turned 10 months old and Kev has been in heaven 10 months..... life steps....

the snow has been flying here and the ice accumulating making traversing any distance on foot a challange....
G continues to battle his sinus infetion but the chet part of this crud is better.... we are suppose to have some extreme low temps this week (single digits) so I am hoping for no further problems....

please remember our South Georgia family.....this day is mixed with joy and sorrow....they will gather to release baloons with notes of love to Kevin....also remember dear Maria who is fighting on in Cleveland and Karis who is fighting in oz....

Godspeed

Wednesday, December 31, 2008 12:06 AM EST

the dawn of a brand new Year and the Eve of the closing of the story of 2008... so many things happened over the last 12 months.... we along with most are glad to see 2008 come to a close

Tonight we will celebrate in the comfort of our home.... the fire will be burning, we will make pizza, some yummy munchies, and watch as 2009 officialy makes it's first appearance....

Thank you all for your prayers, your greetings of encouragement, and your continued support of Gary's Amazing Journey..... we are so very blessed.... Godspeed

Happy New Year!

January 1, 2009
The Dogs just won the Capitol Bowl over Michigan State!!!! GO DOGS!!!!!!!!!!!!

Wednesday, December 24, 2008 7:17 AM EST

Christmas Eve.... the eve of the greatest miracle ever known.... Gary is in the prodecure room as we speak undergoing his scope and biopsy.... the big culprit we are looking for, Rejection.... the second culprit, systemic candida....

our faith remains where it has always been, in the One who continually provides for and protects us....

I was reminded that the devil works overtime and tries to infiltrate your heart, your thoughts and your focus.... and just when you feel like you are seperated from God, suddenly He lets you know that He could not possibly be closer..... thank you Dan for being the amazing "boss" that you are and for all you have done to lesson the burden of this unexpected run to oz....

thank you all for your prayers of safe travels, and for mercies relaitve to the biopsy..... Please remember Maria in Cleveland, Jessie here in oz, and all of our extended transplant family as they continue to wage the war that is life.... will update later... Godspeed

7:00 pm EST He Shall Be Great, and Shall be Called the Son of the Highest~
from Luke 1:32

today has been long, and to say the least, exhausting.... a roller coaster of emotion ...Gary tolerated the biopsy well, as I write this there are no signs of bleeding...Praise God.... Dr Kareem announced that he felt MUCH better after seeing Gary with his own eyes, and poking him a bit.... he said the biopsy looks good, real good, but we still must wait for the pathology which is to come to us sometime tonight via a phone call.... for now, we wait....the other gift we recieved today, no systemic candida.... Praises to God....

as long as we do not recieve a not so good news phone call, bright and early tomorrow morning, as the sun rises on the day of celebration of the Birth of Christ~we will head over the three rivers and through the woods to home.....it is surreal as I look out the window of our ninth floor room here at hotel transplant....to the outdoor space below where the girls love to walk and where we held a power prayer just before Gary's transplant.... we have in deed traveled far....In His grace we continue, with our eyes focused on the future...... tonight we thank God for His MERCY once again as we sit on this special eve, and the eve of Dr Kareem proclaiming, this was a close one.....Merry Christmas! Godspeed

Tuesday, December 23, 2008 2:32 PM EST

the call just came, we are heading for Pittsburgh~G will have an emergency biopsy at 7:30 am to look for rejection... he has candida in his throat no doubt from the Cipro

pray for safe travels, and no bleeding in the morning....Godspeed

Sunday, December 21, 2008 7:04 am EST

Winter Solstice is upon us...today will be the shortest day and the longest night of the year.... the first official day of winter~

Gary is suffering from bronchitis and a sinus infecton and we are doing everything we can to get him better and avoid heading back to oz....the lung crud has really been making it's rounds and everyone I know, (including me, Michelle, Grady, Jason, so far, Granny has been safe) has been doing battle.... Monday will bring a chest and sinus xr for G, and hopefully a day of feeling better....

yesterday while doing the grocery shopping in anticipation of Christms at home, I could not help but notice the little conversations on cell phones about secret gifts, the rush to pick up the last needed gifts, and the scores of plates of cookies ready to become "homemade"~~ Christmas

this year, we are home for Christmas...hopefully the lung crud does not force us away... Home~ it is where people who you love the most gather to share ideas, memories, hopes and dreams, happiness and sorrow...strength and weakness~~ Home....is where we come to build the things that matter most and celebrate life.... We are blessed to be home for this day of celebration of the Birth of Jesus, who allows for all things in our lives....and think of so many who we love so much who will not be home, but will make home wherever they are....Please pray for Maria who continues in the Cleveland Clinic and for her Momma Susan at the Ronny McDonny House... for Karis who is also in a fight for her life in Oz...for Kareem and Costa who battle on and for the families who made a loving decesion during the most difficult of days allowing us all to be here, fighting on, living life~Please remember our South Georgia family as this Christmas season will be difficult~this year so many of our close friends, warriors, heros, have moved on to their eternal life, away from thier earthly familes....may Peace surround them all~

However you celebrate the most Holy of Days, the celebration of Jesus~ Gary and I along with our entire family wish you and your famiy the most Merry Christmas....

Godspeed

for those who have been emailing with concern that Ashlee was on the Continental flight in Denver which skidded off the runway catching fire, she was not....the report is that the crew and passengers all escaped, with one serious injury....Ashlee is proud of the highly skilled and trained crew who were the heros of this flight and saved so many and we appreciate your concern and prayers...

Monday, December 8, 2008 7:36 PM EST

tonight Gary completed his first full semester....last papers turned in, finals taken.....now, a break over the holiday....Joy surrounds us as he has completed this task which has long been an elusive dream.....

the end of the semester brought the beggining of a new headache, and a horrible cold....he has started his antibiotic and hopefully some rest will bring a halt to the onset of this headache.... if not improved by tomorrow, we will cross that bridge when we get there....

Please continue to pray for Maria as she battles on in Cleveland, for Karis as she awaits yet another possible surgery and the return of a permanent ostomy...keep all of the brave warriors and thier families in your prayers....

today we all live in a very scary world.....Godspeed

Monday, December 1, 2008 7:13 PM EST

Dec 1.... so hard to believe....

Please continue to pray for Maria....she is struggling....and trying to find her way to the surface...

Godspeed

Wednesday, November 26, 2008 11:02 AM EST

Psalm 107:1 (NIV)

"Give thanks to the LORD, for he is good; his love endures forever."

in our family, one of our tradtions has always been for each person to request one special dish..... it seems that every year, everyone requests the very same item....with the exception of Gary who has never made a request....this year, however, things are different!

This will be a very special Thanksgiving. It has always been my favorite holiday, and this year, we are home.....
really home, not just for a break, or a couple of days, but really home.... Thank you Lord for your allowance in our lives~~

Maria had surgery yesterday and I am happy to report that she is doing well.... "tons" of adhesions were removed, her pain is being controlled which is a much different approach that she would have had to endure in the land of oz with little to no pain meds post op. We are encouraged and hopeful that at long last, Sweet Maria can start to realy heal and rediscover her life.... Keep Maria in your prayers as these days are long, and the road lays out in front of her~~

Enjoy this Thanksgiving Holiday with your family and friends....we wish for you, God's amazing blessings in your life... Godspeed

Monday, November 24, 2008 9:22 AM EST

Matthew Chapter 13...13-17...the Parable of the Sower....15 But blessed are your eyes because they see, and your ears because they hear

as we near the celebration of family, love and togetherness, my heart is joyous to be at home.... the road has been long, and I am always aware that at any givin moment...we could find ourselves on the road back to oz.... I thank God for His Mercy in our lives and beg for His continued Grace.....

In the sadness of the news of the passing of Gretchen, which was sudden and without warning as her blood levels were good just last Monday; at the request of Gretchen's Momma, I would ask that if you have anything extra that you could share to help meet funeral expenses, as life insurance is not available, please do so by contacting Five Star Bank, Warsaw NY, ph # 585-786-3131 or by mailing a check to Five Star Bank, 55 N Main Street, Warsaw, NY 14569 made payable to Gretchen Miller Transplant Fund ~ your kind heart and compassion are deeply appreciated ~ Please continue to pray for JoAnn and her family.....

Please pray for Maria... she continues to be hospitialized in Cleveland... I recieved a voice mail from her Momma as she recieved the news of Gretchen... and I could feel the pain coming through in her voice....Maria is a gentle and beautiful spirit, and I would ask that the Lord please heal her, and make her whole as only He can do...she is her Momma's only child and the love of her life.... Godspeed

Saturday, November 22, 2008 12:25 AM CST

Gary here.... Micheal called us and told us that our friend Gretchen Miller, who also recieved 5 organs and shared her story on the Discovery Channel which maybe you watched, earned her angel wings yesterday. Gretchen came to Pittsburgh from New York along with her Momma who cared for her, supported her and always provided love.... we are deeply saddened to hear this news.... so many of my friends have lost their battle lately and it is hard to take. This loss hit Momma very hard... It has been so hard to see so many of our friends fight so hard, suffer so much, endure so much, get a little better and then loose the battle..... mu brother Kevin has been in heaven now for almost 9 months..... I miss him, I miss talking to him...but I know that he is no longer in pain, and has a perfect body, but I still miss him

Momma and me would ask the you pray for Gretchen's Momma as she suffers Gretchen's loss.....pray for our South Georgia family too.... Godspeed

Monday, November 17, 2008 6:23 PM EST

YEAH 48! YEAH JIMMIE! Yesterday Jimmie Johnson and his team won the Nascar Cup Championship for the third time in a row! AWSOME!!!! This has not been done in 30 years!

G is jumping for joy!

continue to pray for Maria who is in Cleveland in the hospital, and for Karis who continues to fight!

Godspeed

Sunday, November 16, 2008 9:09 AM CST

early this morning while taking the girls for their morning stroll, the snow was falling.... our first real snow of the season... and this year, we are home for it.... the thoughts flow freely when our two little girls and I stroll among the familiar historic homes, and the trees that have endured the storms.... Gary is now sleeping in his bed and is about to finish his first quarter at school without getting sick... oh every day brings with it it's challenges and constant threats from just the normal process of living life that have somehow become first nature to us.... Thank you Lord for your mercy and constant protection....we are keenly aware

through the journey we have met some truly amazing people....I wish you could meet them too... likewise, there are those who are spread across this amazing nation in which we all call home...who are so dear to our hearts, who we know so much about, who now so much about us, who are always there, ready to pray, listen, offer encouragement, send e cards and gifts that help a fighting warrier hang on in the darkest of days....all of this and and our eyes have never met.... one of them is my dear friend Carol.... she is a child of the Lord, strong, smart, works hard and loves her family....today is her son Jack's birthday.....Carol if you read this note, and I am sure you will becuase you are always checking in on us and can read my heart even when I try to hide away....we thank you for being the Mother that you have been and continue to be... we thank you for Jack's life and his legacy of standing up for the weak, for protecting the most vulnerable.... a tragic accident may have granted Jack his angel wings, but his love continues today.... Happy Birthday Jack..... Godspeed

Friday, November 14, 2008 8:50 PM EST

over the course of the last four years in particular, so many people have come in to our lives through a journey that we have been blessed to be on, and one that I would not wish on my worst enemy as the saying goes....over the period of the last few months we have lost so many who are so dear to us, and sometimes the pain from the loss seems greater than the joy of having them in our lives...but of course, that is not the truth... the Joy, the Gift of being blessed with just knowing these special angels is amazing, to have had the chance to laugh with them, sit with them, listen to them, love them...that is the greatest, most powerful gift anyone could ever have...

the truth is our lives are so much richer because of them.... Kevin, Jim, Warren, Jenna, Chris, Muhamed ... the pain is so real, and I am not sure it will ever get easier..... the struggle that Maria is fighting through, the battle that continues for Jessie...the war that they all wage each and every day....the grace that they all walk with, the smiles that they wear, the faith that they have that tomorrow will be a better day, no matter what.....

tonight another one of us, is fighting, fighting to hold on to life.. Karis is in serious rejection.....the war will begin with OKT3 and massive steroids in a serious all out war to save the intestine of Karis... she is a five organ who cannot be re transplanted, who has recently undergone hip replacment due to AVN caused by loss of blood supply to her hip. Karis is a very special friend of Carisa..... this war cannot be lost... if you are reading this note, Please, Please pray for Karis and her family who just lost thier Grampa...Please pray for Kareem and Costa who are directing the war in an all our effort to save this precous young, promising life....

We would ask that you join us tomorrow evening at 7 pm... what ever you are doing, where ever you are... Please stop for 5 minutes and pray with expectant prayer, lifting Karis before the Lord...that He would show her mercy, and surround her with His healing power, and protect her, comfort her... Godspeed

Thursday, November 6, 2008 7:33 AM CST

last weekend the time changed which brings the night fall earlier in the evening....however, it also bring the sunrise earlier in the morning...

so much has changed during the time that we were away in the land of oz and so much has happened in the short period of time since we walked back through the door to our home sweet home.... sometimes I still feel a little off kilter and find that I am still trying to adjust... Granny says that sometimes she forgets we are in Ohio, not in Pittsburgh... it is odd how being away for so long, living in so many different places, hotels, apartments, townhouses, family house (ugg), can mix up the pages of your mind....home seems to be grounding us all...and it is always good to come home to Ohio, to our own home after a visit with Kareem and company... what an amazing blessing

Gary is doing well I am so happy and thankful to report! School is coming along for him and he has an A so far in both of his courses... his memory loss and difficulty keeping things in order, processing his thoughts in his mind have really become apparent to me as he has returned to school....but he is thrilled to be attending classes and so far, so good!

so much has changed.... and to my surprise and joy, this year, (may have happened last year too, I don't know) Mom's Mums, which were given to us by our dear friend Linda who had surgery for breast cancer the same day as G's transplant and who is also the Momma to Chelsea kennel mate Zipper, are in FULL BLOOM! They are a brillant deep burgandy rust and just filled with blossoms...they have multiplied which will allow me to transplant some of them to an addtional location... Linda~thank you so much for sharing them with us as they welcome us home each and every day and I think of your Mom who must have loved them too! I just learned from Linda that her Momma shared a birthday with Gary ~ October 16....it is just amazing how small this giant world is that we all share...

Please contiue to pray for our extended transplant family as the fight to survive is not temporary and never goes away...continue to pray for our South Georgia family, the family of Polly McKee who was a dear soul and beautiful person who recently earned her angel wings, and our team of docs in the land of oz as they continue to do what they do each and every day to give us the weapons we need, and for those who need thier help and are looking for hope, the yellow brick road is not an easy path.....Godspeed

Tuesday, October 14, 2008 7:06 PM EST

10/16/08 1:30 am Happy Birthday G! we love you... Momma, Ash and Andrew, Mich, Jas and Grady, Gramma!

isn't it funny how often we see something new, such as a roof that has been replaced on a house, and think, wow, that looks wonderful....and perhaps never giving a thought to what was before, and what happened to get whatever the object is to it's current state?

through out yesterday and today, what was left of our roof over the kitchen portion of our home following our once in a life time encounter with a hurricane here in Ohio, so far from the gulf, (good ole Ike) was torn away to be replaced with a new roof....as the men worked to tear away the outer covering, another layer of shingles was revealed.... they then worked to tear that away as well.... to our surprise, this revealed not solid wood underlayment but rather, wood shake shingles! Wood shake shingles... who would have ever imagined? I must admit, it was painful for me to witness thier demise and I wondered if we should not try to save them, at the same time knowing, they would not stand the test of time in their very fragile state...and then as I watched through the window of the loft, the new underlayment replaced the wood shakes, and the black tar paper sealed it all up... and then, this beautiful little old lady got a new hat! The shingles look as though they belong, and they give no hint to the events that took place that put them there.....

it made me think of the reaction that people have when they see Gary.... Wow, you look great! on the surface, without view of the multiple scars and still open surface of skin, with the bone pain concealed, there is no hint of the road traveled to get where he is today....it is only when digging deeper, beyond the layers, that the wood shakes of Gary's life and the journey on which he has traveled are revealed...revealed but truly not known.....the only way that the sounds and the feel of the rain falling on wood shakes, to smell the sun warm and dry them, can be experienced is to have lived it......

thank you Lord for the wood shakes that make up all of our lives... for the blessings that You continue to provide..... we know not where this path will take us, but understand, that as this new hat of life is worn....it is because of Grace.....strong, and yet, ever fragile.....

Wood shake shingles....Godspeed

Saturday, September 27, 2008 5:55 AM EST

A Friend Loveth at all Times~Proverbs 17:17

our trip to oz went well.... G is sturggling to overcome this horrible cold, chest congestion and otherwise yuck that is going around... he is on Cipro 500 mg 2x per day

blood work stable...all we are doing this time is uping the bicarb...this will help up the o2 levels...

this week we learned that our South Georgia family was dealt yet another serious blow... Stephanie who is Kevin's sister in law, marrid to Kev's brother Ken, suffered a heart attack...Steph is only 34 years old.... she was taken to a larger hospital in Jacksonville and today is thankfully at home... the thought is that she threw a blood clot.....more evidence that out lives can drastically be changed in literally one beat of our hearts... Please lift Stephanie, Ken and thier sweet daughter Kenzie as they work through this, and ask that God will touch Steph will His mighty healing hand and continue to provide protection and blessing as they move forward....

also pray for Maria.....her Momma is away this week and her Dad is with her...they are moving in to yet another apartment, lower floor so Maria can go outside with Bella a bit....Maria is struggling and fighting....please lift this gentle, beautiful spirit and ask the Lord to intervene as only He can do, bringing Maria back to stable ground, safely out of harms way....Jessie also needs our prayers...she too struggles and continues to fight some unknown issue that is causing great pain...Glenda continues the long work of recovery following her 2nd transplant...

this past week, Muhammad who is from Saudi, earned his angel wings following a very long road of complications after his 5 organ transplant...his Father has been here with him for a very long time and they together have fought the transplant and post transplant battles....Muhammad's Mother, brothers and sisters were here with him and we are thankful for this...please pray for this family as they embark on the long journey home....

these are strange times that we are all living in these days... I personally would ask you to pray for our leaders, and future leaders.... our country sits at a crossroad...God's direction is so needed

Godspeed

Wednesday, September 17, 2008 8:58 PM tEST

it has been a wild week.... Ash was in Houston just before Ike...now Ike, after leaving behind his horrible rath on Texas and Louisiana has come to visit us in Ohio...in Indiana, Pa.... it seems Ike has made a visit to many of us.... leaving behind destruction and misery..... our power, phone, internet have all been out until now.... we lost our big ole Maple tree but thank God when it fellit did not hit our house, the neighber's house or anything else...well, it did wipe out the neightbors privacy fence, but did not touch the house... thank God for this mercy.... the screens on the screened in porch and the kitchen roof.... but all this stuff is fixable.... it is expensive to have a tree, or what is left of it taken down.....most importantly, everyone is safe....

our trip to Pittsburgh had to be delayed until next week...the gas stations are for the most part back open, and I think that today they all have fuel.... many of our neighbors are still suffering with no power...we have made made available our grill, the microwave, the kitched stove...even the shower to our neighbors if they need.... thankfully, it is not 90 like in Texas and not raining...

wow.. who would ever believe that in Ohio we would see 6 hours of Cat 1 Hurricane winds.... amazing~~

Godspeed

Saturday, September 13, 2008 7:52 PM EST

sorry G, GO BUCKS!!!!! G's Wolverines lost today...and Jimmie races tomorrow... we are ready! The race for the chase is on... GO JIMMIE! GO JEFF!

we are preparing to head to the land of oz so that G can have blood work early Thursday and see Dr Kareem for a check up, or should I say, check in! Hopefully, prayerfully we will get the ok to come home Thursday afternoon.... I am looking for someone to stay with my Mom Thursday... I am concerned leaving her alone...she won't eat if I don't put it in front of her and she is not real stable on her feet....oh she can walk, but is wobbly as she would say... if you know of anyone who would be availble to help us out for a day, please ask them to email me...

Please pray for our friend Maria...she is the most gentle person you would ever meet...she has a sweet little fur baby Bella who along with her Momma Suz takes such great care of her.... Maria is from Hawaii and had her transplant after G... she is in organ failure.... Her Momma is running her hospital care at home, much safer and more comfortable at thier home sweet away from home in Pittsburgh..... Maria is fighting hard, bravely and with great courage and grace... her hugs are the sweetest you could ever imagine.... Please, pray for healing and pain relief for sweet, sweet Maria.... also,please pray for Jessie.. her Momma and Daddy brought her home to Ohio for a few days...back to oz Monday....surgery consult...hopefully Kareem and company can get her pain issues figured out and go in there one more time and get her fixed....

Sweet Dreams.... Godspeed

Wednesday, September 10, 2008 7:01 PM EST

Our friend Karol from California, who’s lovely daughter Jenna had a kidney transplant left a note here on the bridge that said, I remember how much harder it has been…stay in the moment….

Today I was reminded, not that I will ever, ever forget, how much harder it was…. I received an email from someone who has visited us here on the bridge…. The email was concerning a friend who is on TPN due to pseudo obstruction and gastroparesis…after enduring 6 surgeries, the doctors have basically given up….telling her she would not be eligible for a transplant… too many surgeries….

The frustration wells in side of G and me…. As you will recall, he endured 32 gastro intestinal surgeries before we headed to Pittsburgh…..life so close to the edge, just barely hanging on….

If you personally have not been past the edge… saying that I mean, past the point that normally results in death…..I pray with all my heart, you have not been there and never will be… if you have not fought death off with everything you have.. it is hard to understand….but if you have been there, if you are there right now….we are praying for you……I know where you walk...you are not alone

It is sad and hard to believe that physicians can be so uniformed or misinformed..or are they too wrapped up in their world to take the time to search for an answer? Or are they too above themselves to say, I just don’t know…do they not take time to search for an answer for a direction for someone who may offer hope…. Thank god for Dr Nwomeh and for Dr McClung who were not afraid to say…. We need to find a new direction….

I ask you if you are reading here tonight, please pray for this person who is searching for help, searching for hope, searching for life….. Pray that they will be brave enough to make the call, to face the days ahead and that God will bless them beyond imagination…. and pray for the family who this very night may have to make the decesion, to donate precious organs~

all things are possible to a believing heart….the road to transplant and beyond is not easy, is not simple…is not, well, there are no sure things.. it takes a village… and we must be each others village…

Today our little Grady is 6 months old and we celebrate and sing out in joy…. Today, Kevin has been with the Lord 6 months…..miracles and tragedy…they walk hand in hand…

I remember how much harder it has been….. Godspeed

9/11/2008 it has been 7 years today.... may none of us ever forget...

Saturday, September 6, 2008 3:52 PM EST

last night we watched Standup to Cancer....an unprecedented effort of all three networks.... I heard a very interesting quote which was a favorite of a father as quoted by his surviving son....

"the difficult things we do immediately, the impossible things we do take a little longer"

every day I check on our bridge family..... my heart aches as I read the words and know that pain and understand that the difficult things that they are immediately doing come with uncertain outcomes and that the impossible things that are lurking in the big picture....will take a little longer... I look at Gary and see him doing better than any of us ever imagined he would.. most particularly after suffering his bleed, and the nearly year long fight it took him to get back..... I read our bridge friends’ words and wish that there would be away to make these horrible struggles, the fight, the battle stop...and for the world to just be okay......

Gary has now been home long enough that it is time for a trip back to the land of oz for a check up... he has had one series of blood work here at home, which thankfully looked great.... the next round will be done in Pittsburgh....I think of how much the Lord has blessed us and I am humbled and can hardly believe..... I am working slowly to try to recover form the multitude of financial issues that serious, long term illness brings.... I am making a concentrated effort but know in my heart, that the impossible is going to take a little longer.... all I can do is all I can do....the focus remains, that we must always be ready within a moments notice to load the car, and head back to the burg....that being said.... Please pray for our extended transplant families... for Jessie (Oh) who continues in oz with serious and painful issues following her second muti visceral tz, for Maria (Hw)who still fights the fight and is determined...for Karen and Mike who thankfully are doing ok....for Jarett (Ks) who again waits.....for Gregg (Oh)who has endured two multi viscerals and is an encouragement to all who he is around with his big smile and bigger than life spirit...for Angie (Oh) as she recovers from an infection in her foot which landed her back in oz... for Gail who endures the earthly loss of Jim...one day G will be able to call her to talk about his friend... for now, it is too close, too raw, to soon after loosing Kevin.... for our South Georgia family who would give anything they have on this earth to once again be trying to figure out how they will get back to Pittsburgh, hang out at hotel tz, catch the shuttle and battle the rain to spend yet another Sunday in a back breaking chair on 7 west....

the difficult things we do immediately... the impossible things....well, they take a little while longer....

Godspeed

Tuesday, August 19, 2008 7:28 PM CDT

It is not the mountain we conquer, but ourselves
Sir Edmund Hillary

Gary has enrolled in college.... this is his 3rd attempt...three is my favorite number which I am sure you know if you have been to the bridge very often... illness always stopped him before....this time, and I quote, "I am not sick"

it is so strange to hear Gary say that... I am not sick.... a couple of classes at time so as to not become overwhelmed or exhausted....Gary is tolerating his injections well as we try to rebuild his bone...the only side effect is head spinning after injection...

recently we attended an auction and replaced our lamps... wow, we have light! a refurbished vacum arrived and works like new....we are unpacking and it is fun to welcome our belongings back home....Ashlee's grapevine and ivy will soon stand proud on the shelf in the kitchen, Michelle's pots and pans hang from thier familiar spot on the pot rack (which by the way was salvaged by us a long time ago; beautiful wrought iron saved from the dump)

as we thank God for his continuing mercy in our lives, and the blessings that He alone allows...we ask for your continued prayers for Maria who is struggling....for Jessie, Angie, Karen and Mike, for Gail, Jarrett.... for so very many ... for Kareem, Costa and company who today, just like yesterday, and as they will do througout this night and begin again tomorrow, finding the weapons for us all to fight the fight....I think of our donor family... Lord protect them from the storm in Florida..... sleep well, sweet dreams...Godspeed

Wed 8/19 Please donate blood today! There is a critical shortage currently ... do this in honor of a beautiful little girl named Izzy...Izzy recieved 5 organs at Children's in Pittsburgh and sadly, recently earned her angel wings after 10 short years on this earth...she was a staunch advocate of blood, organ and tissue donation.... so today, call the Red Cross....and in honor of Izzy, share your blood...save someone.... Godspeed

Sunday, August 10, 2008 8:35 AM EST

the sun peaks through the leafs casting a dance on the window...the shadow of this ballet falls through to the inside of our home...summer at home... what a blessing

Today, August 10, 2008....Gary is 40 months out, Baby Grady is 5 months old, and Kev has been in his perfect body with the Lord for 5 months.......40 months ago today, Gary lay on an operating table, his heart on by pass to allow for the arotic graft to be constructed for the first time in history....this incredible task still today supplies fresh life saving, life supporting blood to the five organs which now fill what was the hollowed out cavity which had onced housed his non functioning intestinal system...life, given by a family we will never know.....well, never say never as I have learned....

it took us awile to get home after transplant ....39 months, and that is okay... with the exception of a few precious weeks in 2006 before graft vs host, and then later Rotavirus became a reality in this journey....being home has brought adjustments....our hearts are filled with joy at being back here and I think that every day, we find our selves saying, I cannot believe we are home...we are keenly aware of the enourmous miracle of still having our home. Many families are forced to walk away, leaving what was thier home, behind...simply walking away...The days since our arrival home have been filled with taking the pieces of what is the life that we live and putting the puzzle in to some sort of normal...it is easy to think that one just comes home and life falls in to place...it does not happen that way....I AM NOT complaining... I am sharing this information so that others who must be away from home for a long period of time, living on the very edge and sometimes hanging over the ledge and grasping with every strength they have, will not feel guilty, will not feel alone.... I do not know the total financial cost or where that will all lead as we move forward... truthfully, it does not really matter to me... what is the price of the life of someone you love, and is it ever to high to just simply try to help someone who cannot help themself? Money is so temporary, and so necessary....an interesting conflict of contrast....

Gary has not ventured in to sleeping in his room yet..he continues to sleep in the recliner....small steps... my room does not yet exist... I need to purchase a bed, dresser, all that stuff that makes a bedroom....Grama has settled back in to her room and we are busy framing photos of flowers to smile up her walls....

thank you for checking in on us.... we need and apreiate your continuous prayers...Please pray for our many friends who continue in Pittsburgh...this week in particular, lift Maria...she will perhaps be relisted...it is so much more than a three sylable word... please pray for her Momma Susan as well...Godspeed

Wednesday, July 30, 2008 6:52 AM EST

last night we watched the Primetime special about Randy Pausch.....no dobut by now you have heard of Professor Pausch..... in case you have not, do yourself a favor and click on the link below...... if you have never stepped inside a college classroom or lecture hall or if you have spent many hours in such a place, this 76 minutes may change your life... and without a doubt will touch your heart....

In short, dying is not about death.... it is about living... Godspeed

Sunday, July 27, 2008 7:37 AM EST

if you are not a morning person, you just don't know what you are missing...the air is clean in the early morning...the breeze is quiet....there is a coolness to the early morning that refreshes your body, as well as your mind.... oh there is nothing wrong with sleeping in.... I have always wanted to try it.... perhaps one day...

today we will celebrate the mark of the 80th year of my Mothers life....she is none too thrilled but we are! There is only my brother Don and me left... he and wife Kathy celebrated 18 years of marriage yesterday....we will all gather here today, at home..... grill some burgers and brats, eat some fresh Knox County grown corn off the grill, and have cake (baked and decorated by me :)) and top it with Michelle's home made ice cream... Jamie and Justice will be here... lord how I have missed them... Ashlee will probably be flying, but if not, she and Andrew will make the journey from Cleveland.. Dena and Ryan are too far away in NJ but I am sure a phone call will come... Chelsea and Pete are tied up with kid’s activities and Ryan and Erin are in Virginia.... I remember my Grama's 80th birthday... it was at my Mom's..I can remember thinking...hmmm, my Mom will never be that old.... time has a way a tricking us.... back then...Gary was hooked to a cumbersome machine that fed him, or attempted to feed him 24 hours a day.....he did not eat anything by mouth... he was pale and cold to the touch..... holding Grady last night, rocking him to sleep reminded me that babies are warm and pink....I have noted that this year, on my Mother's 80th birthday, Gary will eat food off the grill...enjoy it and not wait for pain to follow....there will be laughter and memories shared.... and I wonder if the thought will cross my kids minds... hmmm, 80... my Mom will never be that old....

Please pray for the Barr family... they live in Sunbury and their 3 year old is battling PNET.....at Gary's request we attend a fund raiser yesterday.... Godspeed to this family.... also please think of Jessie who is in the hospital in Lima...Angie who is just not feeling so hot...Gail as she works through these days after Jim's flight to heaven...Karen and Mike continued protection...Jarret who once again, waits.....Nancy who is working to put life back together somehow in the weeks since Warren earned his angle wings... and for our South Georgia family....the ache continues to be fresh... loosing Kevin has been a hard thing for us all to get our arms around.....

Celebrate today with us, even if you don't know Granny..... her life experience has reached 80 years... Oh the miracles she has witnessed... Happy Birthday Mom....

Godspeed

Wednesday, July 23, 2008 11:00 PM EST

the white shears once again dance in the breeze of the open windows, the weeds have been pulled from the herb box Ashlee and I built a few years ago and it like us is ready for new life, we have spent precious time with baby Grady, the dogs hop through the rooms with joy, and a beautiful photograph of Pittsburgh given to us by a dear friend hangs in our family room. Pittsburgh, where miracles happen... we are home.... things are coming together and our house is starting to feel like home and somehow I feel like our old house is as happy to see us as we are to walk within these walls again ... it is hard to believe that we are really here....God's allowance in our lives overwhelms me

G is doing well and after calling 17 different physicians here, we finally found one who will serve as a PCP...we had to have medication shipped from oz and have already hit the local ER as the infection in G's elbow made a sudden reappearance after a fall.. a quick cell ph call to Costa, and last minute stop at the pharmacy for Cipro and we are back on top of it.....Medicaiton is a complicated issue and it will work out in time....

Since our arrival we were very saddened to learn of the passing of our good friend Jim Haas....Jim earned his angel wings after a galliant battle with a horrible infection...Jim always wore a smile, always had something nice to say, and always made you laugh... Gary will always treasure the friendship he had with Jim...one of the sweetest human beings a person could ever meet.... Please keep Jim's wife Gail, who is just a sweet and wonderful lady in your prayers as well as all of this precious family as they endure this horrible pain....

As we bring to a close this day in our home.... I think of our friends who are either in Pittsburgh, or temporarily at home..and those who no longer have thier home....I wonder as I listen along with you to all of the political chib chab... health care for all? the cost of this, the cost of that.... I wonder, do the politicians really have any idea... Barack Obama and Hilliary were both within 50 feet of UPMC and never walked through the door....I wish they would have... I wish they would have....

thank you for your continued prayer for our family...... we are thankful to be home, more so than any words I can blog here can come close to expressing.... we close our eyes tonight not knowing what tomorrow brings.... but knowing that we are not alone.... Godspeed

Sunday, June 29, 2008 8:50 AM EST

I awoke this morning with my mind not being filled with all the tasks that must be acomplished over the the next couple of days..... my mind, my heart was filled with thoughts of friends....Mike and Karen... Sherry, Kev and our South Georgia family...Maria, Mum and Bella...Jessie and Linda...Angie and Linda...Jim and Gail..Greg, Nikki and Nancy and the rainbow given as a gift on Nik's wedding day.....so many dear and special people who are such a deep and special part of our hearts....if you are reading this little note....I wish that you could meet them, all of them, and just observe.....listen.....the issues with thier bodies is not the first thing you would notice or see....the first thing you would be struck with is thier eyes....alive, bright....thier smiles....I know people who have never been sick a day in their life who have never smiled like they do...not a painted on grin, but a smile from the soul.....I wish you could meet them....all of them.....

our next couple of days will be filled with the things that must be acomplished.....we are humbled, thankful....the next time you read words here they will have been written from my hands in Ohio....home....back to the place where it all began....Godspeed

Friday, June 27, 2008 10:22 PM EST

Friday night brings to a close a very long week....I don't know how many needle sticks G has had over the last 10 days...nor can I remember how many IV's have been ran....this week has tested me personally, and hopefully God would say....yes...you did okay....and did not doubt....may have had a couple of weak moments but we will chalk those off to lack of sleep....

the packing was removed from G's elbow today....it continues to drain....that is actually a beautiful thing....the last run of Vanco was today as well....the okay to head west has been granted.... praises.... of course we will stay on watch for infection or anything else that is well, not in the plan....

Home...... we are blessed to still have our home...there are many families not only here in transplant land who don't...and many familes across America for a variety of reasons that don't... our hearts are so thankful .....

Pray for Nikki... her wedding is this weekend..... the saddest of times followed by the happiest of times.... tragedy and miracles.... they walk hand in hand....Godspeed

Thursday, June 26, 2008 5:11 PM EST

after a night of broken rest, nausea greeted us with the raindrops of the morning....another early day of Vanco IV and some Zofran....then home for some much needed rest and dinner tonight with friends Laura and Denise.... tomorrow will bring another IV stick, more IV Vanco and hopefully no Zofran will be needed....becuase hopefully no nausea....tomorrow will also bring another pull of the packing, (one of my most dreaded things as well as G's) and a repack....then......our focus will be on home....home.....my mind cannot really get there quite yet....so much going on with G.....as long as the infection stays at bay, and I can handle changing the packing...okay take a deep breath....this open wound will not be a problem....

Pray for my strength, for no nausea, no more pain and no rain for Monday.......Godspeed

Wednesday, June 25, 2008 6:33 PM EST

surgery went well...the abcess was opened, cleaned, and then packed and left to drain, drain, drain...... it is painful and Kareem agreed to some pain meds to get us through the night....the lower arm and hand are quite swollen but there is no temp... I removed the tight post surgical bandage and replaced it with fresh, not so tight bandage...hopefully this will help... tonight we will monitor drainage, bleeding, swelling and temp... hoping we see nothing, well, except for drainage and moderate bleeding....

I discovered that I can rent a couple of guys to help load the truck.... for a mere 350.00 I can get someone to help load the truck on Monday and unload the truck once we arrive in Mount Vernon.... going to have to fit this in the budget somehow....thnxxx Linda for the hint....was really having a tough time trying to figure out how in world I was going to get through loading all on my own....

We will head for oz bright and early for yet another IV and more Vanco....then, we will see where we are.... G is glad the surgery is over....and hoping to sleep tonight.... I will not be sleeping far away; neither will Chels and Toshie.....hopefully by standing guard, any negative vibes that may think they are going to sneak in will be kept at bay..... Your prayers and thoughts are so appreciated.... Gary has read the notes left here on the bridge today and we both truly appreaciate the love and encouragement you have provided through the kindness of a simple act..thank you

.....tomorrow will be a big day...and hopefully a good day with no negative news....

keep us in your prayers ~~Godspeed

Monday, June 23, 2008 9:00 PM EST

the problem with our bodies stress response is that the more it’s activated, the harder it is to shut off...rather like a broken bath tub faucet...rather than leveling off once an event has passed (hmmmm passed, now there is an interesting idea) the stress hormones, heart rate, and blood pressure remain elevated.....I know a little about stress.....

our last week in Pittsburgh, full time week that is, has come with a huge amount of stress.....hmmm, how fitting I think to myself....so maybe tonight I will just try to empty my head so I can go to sleep...(normally I am not a whiner, I am a doer, but what I feel like doing is whining, odd)

the Vanco is not working...the dose was increased to 1.50 mg/250ml today, and again tomorrow morning...then on Wednesday off to the OR G goes. This will be surgery number...uhhhh, 37 or 38 or...well at this point, I cannot remember...the elbow will be opened, drained, cleaned, and hopefully the problem will be solved. The problem interestingly enough has grown from a bacterial infection to an abcess (love those things, have never had one in the elbow before, but plenty in the belly, and a few times in one of the horses feet)..hopefully healing will come without addtional infection from the surgery.....I have often wondered about those people who you know who have put their fist through a wall....what a release that must be! But at the risk of breaking my much needed hand, I retreat from the idea....The move is still on.... in my exhausted mind I am trying to figure out how to keep my sea legs over the next few days, get everything done that needs to be done, complete the packing, load the truck, (oh...did I mention that Ashlee's flight schedule is full next week?) and drive home to Ohio....then unload the truck.....I just need to eat more spinach....

last night Jeff Foxworthy of all people reminded me to Be Still and Know....be still and know that I am God, and through me all miracles flow.....I am reaching deep to be still and know.....recently I have been asked the question, how much can one person stand? how much I have been asked can one person endure until they break.... hmmmm, interesting question.....to which I do not know the answer.....perhaps over the next few days I will find out.... perhaps not....for now on this night before the light that will announce day 5 of Vanco...I am just trying to concentrate on being still....and I do know~

Godspeed

Sunday, June 22, 2008 8:54 AM EST

the early morning hours finds us back on 7 west... to my surprise, Kareem did not order a Vanco trough for today...normally this happens after two doses to determine the level of the powerful medication in the blood stream before infusing more....the nurse was somewhat concerned....but as we sit here....the third dose of Vanco runs... a serious attempt at beating this infection....

Gary is jibber jabbing away with a kidney transplant patient who was done on Friday the 13th....he is living in Erie...so far, so good... we are talking about fund raising...necessary for survival in transplant land....not an easy task but necessary to survive....

once the vanco is complete we will stop by CVS, pick up some prescriptions...then back to home sweet away from home to pack, pack, pack....

tomorrow we will know...is the vanco working....or, are we headed to the OR.... not to worry, that is His department... we are just along for the ride...Godspeed

Saturday, June 21, 2008 6:39 AM EST

the morning finds us on 7 west as the sun rises in the east...we see an old friend who recieved 2 organs in 1999, then a kidney to add to the mix in 2002...she has on ouch on her leg which demands Kareems attention...just across the room is a man who is fresh out of a kidney transplant and his caretaker sleeps in the chair....ahhhh, yes, those days of grabbing a little sleep whenever and whereever sleep is available....those little 5 or 10 minute cat naps are what gets you through and keeps you sharp....

G will have round 2 of a massive dose of Vanco, 1.25 mg/250 ml, in laymons terms, that is big....we wait for the IV team as his veins are, well, not all that excited about getting an iv every day and really do not cooporate very well. These moments are when you actually miss that PICC line...G is allergic to Vanco so he will need tylenol 650mg and 50 of benadryl 1/2 hour prior to the 2-3 hour Vanco run...today the arm is not quite as red but the swelling has not relented and may actually be a little larger....time will tell...it is amazing to me that G faces the known with a happy spirit and always hopeful heart....he knows this morning will bring more sticks and pain and hopefully not the agonizing itching... the iv team nurse arrives and wears a smile announcing as she moves the bed to access his right arm here is your free Kennywood ride....first stick, it is in, thank you Lord for your mercy....stings, ouch but not too bad....hey... here is an idea...let's try to hang on to this iv for tomorrow :) we will see how it holds up...

the sun is rising~the sky is dancing with colors that could only be placed by God....it makes me think of the promises of today as I hear the little conversations that go on around us.. FK level, blood pressure, any med changes, how much have you pee'd since yesterday, any nausea?, depression? are you feeling anxious? (hmmm, can't imagine why anyone would feel anxious here?) any numbness, ringling? rashes....are you short of breath, what color is your unrine...are you in any pain...hmmmm, no pain...oh..well that is good...turns out his care taker is his sister...let me see that incision...poor guy.... he is not used to there is no vanity or privacy here in transplant land.... anyone and everyone learns your history, knows your sleep patterns and what color you pee is within 5 minutes of arrival...ahhhh, sweet morning....

as they inject the premed, G gives instruction...and rearranges the tape on the iv....jokes with the nurse who is practically standing on her head to get the IV hooked up given the location ...hey, be sure you alcohol that....

as the day unfolds her on 7 West....life in our world comes to life...the new guy sorts his pills, his sister falls back asleep....for some reason, I was thinking of Kevin this morning sitting here on 7 west, sleeping in the chair....of Karen and Mike, of Maria....of Jessie and Jim, of Angie...of Warren...of Chris, and Jenna...of Kathy, of John...We have had birthday parties here, hugged, laughed until we cried, but never, never any tears...that is forbidden....tears = fear and fear is not allowed, no room, only courage...I hear Jia and Melanie the two nurses who arrived this morning bright and early to care for those who arrive on 7 West....angels of the morning...pre med in...let the day begin...Godspeed

Thursday, June 19, 2008 10:06 PM EST

this morning bright and early I ran in to Kareem in the parking garage...I could tell by his darkened eyes and weary face even so early in the day...it has been a tough week.....he asked what happened to Gary...why was he in the hospital... we talked briefly....he hugged me and we both moved on to attack the day at hand....

Gary will start five days of Vanco (IV Antibiotic for nasty bacterial infections) bright and early tomorrow morning... the infection in his elbow is turning in to the infection that is filling his arm....he is on oral antibiotics prescribed by Costa on the 17th when G was released but they are not getting the job done....Kareem is concerned that the infection will attack G's already fragile bones....if the Vanco does not work then on Monday we will head back to the OR...open up the elbow and see what the heck the culprit is......and yes I am aware that this is one week to the day that we are scheduled to leave oz and head over the three rivers and through the woods to home.... I must admit I had a brief moment of panic...okay, not panic but the thought of panicing was in my mind....so I had to call Ashlee and get a dose of it will be okay Mom....Michelle is fighting a horrible bout of bronchitis and worried that little Grady will get it from her... the doc says he more than likely will not get it.....but he did have a low grade temp last night.....oh life....I wonder sometimes what those people do with themselves who have a perfect little existence....no illness or at least normal illness's....quiet little day to day life....I wonder if they are board? I wonder if they even have any idea.... well, back to the present... Jessie is doing well after her surgery today to remove nasty scar tissue...was headed back to the OR tonight to have some stints removed...pray for Jess... Jim is hanging on and fighting the fight... pray for Jim.... Nikk and her Momma Nancy held a service for Warren today....my favorite picture of Warren is him at the grill in a baseball hat, sunglasses and a Steeler tee shirt....pray for them... today Kareem asked G about Sherry and our South Georgia family...G suggested a phone call ... I just can't was the reply...

as we all face days of pain and wonder about the day that is to come after today....I wonder about the battles that go on in silence...that noone is aware of....thank God for the bridge....where we can come to gather strength, to share our thoughts, to encourage and lift each other....it is a little like a filling station....we come to the bridge empty and and find fuel.....one day, one step at a time....sweet dreams... Godspeed

Tuesday, June 17, 2008 7:21 PM EST

G was released today..... the consensus is the headaches are coming from the FK.... I have asked Dr Costa to give some consideration to changing out the Lopressor for Inderal... will control blood pressure and hopefully kick the headaches all at the same time... Costa has to check in the Inderal to see if it would cause any threat to G or would interact badly with his other meds.... a juge homework assignment..... we are trying to cut down on tylenol to try to avoid tylenol bounce headaches..... hmmm we will see what we come up with.... when G was released he brought with him an infection which has settled in his elbow.....no idea where it came from or what it is... but he has one elbow that looks like the incredible hulk and is on antibiotics to kick that... hopefully they work and work quickly....it occurred to me today the the devil is working overtime to make us doubt, to make us afraid, to make us question the move home... but we will not be derailed....plans are "moving" forward.....

Please remember the family of our friend Warren....they are hurting, but know that things are not just okay for Warren now... they are in deed perfect....if you could also remember our South Georgia family... the days without Kev's earthly being are difficult....Jim continues to battle on in a serious battle... please lift he and Gail as well... Maria, Jessie, Jarrett, Karis...Karen and Mike, Angie...Greg...so, so many of these brave and amazing warriers....all of our donor families....without them none of us would be here now.....Godspeed

Monday, June 16, 2008 12:55 PM EST

it saddens my heart to share that our friend Warren Jones earned his angel wings today..... Warren, plain and simple was a very nice human being with a great sense of humor...and he fought the battle bravely... Please pray for Nancy, Nikki and this entire family as they endure....

Godspeed

Sunday, June 15, 2008 1:11 PM EST

sometimes, we just need to listen.....really listen..... last night after taking G and Grama a Brazillian restaruant that Gary has been wanted to go to forever.....we returned home to do some packing.... we only have two weeks to go! Tosha kept laying beside Gary crying....crying, CRYING, CRYING...she was intent and would not relent...she would not leave his side...

at midnight G awoke with nausea, vomiting and a severe headache in the back of his head and top of his neck....he has a headache every day but it is always in his temples and forehead...more than likely from the FK which he takes to keep rejection at bay....blood pressure was elevated and he was weak....even after he came to alert me, Tosha who was now in her crate for the night was still cying, and barking.....a quick call to our transplant hotline and a not so quick call back, we were on our way to the hospital to be admitted.... the nuerologist was waiting for us on the 12th floor and her concern the same as mine... are we looking at a bleeding vessel in the brain or an impending aneurysm??? A headache and rising blood pressure is never just a headache in a transplant patient and not to be ingnored. G's neuro evaluation went well, and the zofran I gave him before we headed for oz started to quiet the nausea and vomiting....He went to MRI at 5 am and was back at 7 am....by 9 am we knew.....no bleeds in his head...everything looked good.... Thank you Jesus.....they wanted to do a lumbar puncture to check for infection...but to my surprise it was Dr Bond to the rescue and for once, better mark this one down, agreed with me... no lumbar puncture...the risk of infection is too great and this should only be done when absolutly necessary... it is funny how even when we are facing a potentially serious issue, and we have no clue which way the roller coaster is headed next, there is no panic; just simple faith and knowing that we just need to hold on tight to faith and know that no matter what...we know who's hands on on the wheel of this ship.....

as I was driving back to our home sweet away from home with weary eyes and a tired mind... I couldn't help but think about Tosha's insisting cry, and evenutual barking. I thought about Chelsea sitting close by and looking at Tosha, and looking at me...today in retrospect I think she was the tutor giving her approval.... as I took Toshie and Chelsea for a walk late this morning they were both more at ease.....and Toshie has not cried at all today.... she has learned her job well from her fur sister Chelsea....and last night she earned my trust along with Chelsea's approval.....as I stroked her soft and beautiful sable coat...."you did good baby", "you did good, we just needed to listen"

today we are thankful for God's ever present hand on this beautiful frankenstein body that allows G to have life.....life, better than he ever had before his transplant... for neuro fellows who don't get enough sleep and tell bad jokes at 2 am, for MRI's at 5 am and yes, for a moment of peace between a Mom who does her homework and an advisary....but perhaps most of all... a knowing little bundle of love wrapped up in a sable coat with the face sweeter than I can describe.....after getting some rest I will return to oz to give G his injection and just sit for a little while... perhaps I will take the laptop and we will watch "The Bucket List".... and chat G in to what will hopefully be a quiet night of peacefull sleep...

Please continue to pray for G, for Jim, for Dilly, for Aries....for so many who today as every day....continue to fight the battle with grace, dignity and a smile~~

6:30 pm - I just learned that our friend Warren was moved back to the TICU... he has a very serious infection (neg bars for those who are tz folks) and is in need of immediate prayer and intervention.... Nikki who is just the greatest young lady and Nancy and Warren's daughter is getting married in two short weeks....Warren is pastor...Please urgently lift this entire family before the Lord..who through Him all things are possible.....pray with an expectant heart....Godspeed

Godspeed

Friday, June 13, 2008 10:43 PM EST

every step that we take in the journey requires that we take another leap.... when a person has a body like Gary's one would think there is not much left that is unknown, or untried.... this has been a week of taking steps and now we are about to leap....again~~

the amazing news is that Gary's hips are in better shape than we anticipated learning...before you jump for joy, they are in danger of breaking at any time... as are his legs, arms, ribs and pretty much everything in between...hip replacement is painful and dangerous for anyone, but extremely dangerous for a transplant pt....so what do we do... well... here is the leap... tomorrow we will start a new daily injection to rebuild bone...it will take two years and insurance issues are on going and unresolved... but with thanks to Eli Lilly and Company and thier willingness to cover month number one of treatment while we fight it out trying to get coverage, month number one will begin...tomorrow at 8pm the first of daily injections...we will closely watch calcium levels and keep a sharp eye out for any threat of infection, increased heart rate, any neurological issues...

after a quick trip to see Mark our pharmy guru in the morning we will also begin treatment of what turns out to be a yeast infection causing brown spots on G's neck and shoulders...our new dermatologist is also SURE that she knows the answer to our seemingly unending issue with G's incisional area..so we will pick up another new topical for that... what the heck, maybe this one will help :)

G is not looking foward to an addtional injection, most particularly one every day, or should I say evening... but...if it means that we can actually rebuild his bones that are disappearing before our eyes......in G fashion... we watched the video together and ...."let's get er done"

Our friend Jim is awake....well, sorta... not off the vent and still dependant on life support as his body is not able to function on it's own and his counts cames back positive so a newly placed PICC had to be replaced and the battle against this horrible infection(s) goes on.... Please keep Jim and Gail in your prayers...the battle is rough, and the threat to his life is very real...

Our little friend Dylan (Ohio) had what was the third attempt to fix his broken heart yesterday.... I am relieved and excited to share that tonight he is dong well! Dylan continues in the ICU at Children's in Columbus, Ohio...but, he continues and we are so thankful...Please remember Dylan, his two brothers, Momma and Grama as you say your prayers

Aries is fighting along and had an allergic reaction to one of the drugs in his chemo treatment... he is recovering from this set back and remains in the battle... please keep baby Aries in your prayers as well...

Next week will bring hip replacement surgery for Karis....Karis has endured two transplants and somehow managed to graduate from Notre Dame.. this is one amazing young lady... Please keep Karis in prayer as she will undergo this very dangerous surgery this next week....for her, the daily injections that G is starting came too late....

sleep tight tonight.. Godspeed

Monday, June 9, 2008 8:53 PM EST

the days at the hospital leave G and me tired.... we come to our home sweet away from home exhausted....but, thankful that we get to leave~~

our good friend Jim Haas from here in Pa is very, very sick...he is suffering from a lung infection of the most serious kind, and of the rarest kind...he is on the vent and in a special bed that allows for pronation therapy. Dr Costa is at the helm and Gail's sons came home....Please pray for this family who even in the most fierce battle, still manages a smile.... Please pray for wisdom of the physicians.....

today I recieved an email from our friend Linda in Cleveland...she had her surgery for breast cancer the very same day G was transplanted.... she asked for prayer for Leroy who is battling cancer for 2 1/2 years... and now the cancer has exploded.... you can read more about Leroy on his blog at:
http://www.npr.org/blogs/mycancer/

Please keep him and his family in your prayers as he bravely battles on....

which brings me to little Aries... he is just nine months old and fighting cancer in Ohio... he is the nephew of my friend Retta who I worked with before I brought G to oz... Aries recently went home to continue his chemo treatments... pleaase pray for this little warrior who bravely battles.....

There are days when I hear people openly complain about thier lives....how unfair something is, or how life just can't get any worse.... I want to walk over and take them, no grab them by the hair and drag them across the bridge to the TICU....if you want to see how bad life can get, I can show it to you....of course, I can't drag people across the bridge by the hair....and I am sure the the TICU would not hold all the visitors that I could drag over there....I just hope that if one thing, one message comes from all of this, it is that life is so very precious.....don't waste it.....and more importantly don't waste it by complaining when really, the things that get complained about are usually so temporary, so not important, so not life threatening..... life....embrace it today for tomorrow comes with no assurances....

thank you for your prayers for G, our donor famly and our entire family....Godspeed

Monday, June 2, 2008 8:12 PM EST

This week is filled with Dr appts...blood work etc etc... G is doing well and the clock is now ticking.... we are looking forward as the day nears that we will move home. Gar just needs to stay solid, have good check ups and not get sick!

blood work over the next few weeks and July will take us over the three rivers through the woods to home sweet home.... there is much work to be done, many things to be set up, established acomplished.... and we are working hard to acomplish it all.... my main goal for the next few weeks is to keep G safe and as healthy as possible... and to pack up our lives in the land of oz.....

Please pray for our good friend Jim Haas... he has been very ill over the last few weeks and was taken back to the TICU over the weekend....thank you all for you prayers for little Aries...he is nine months old and the nephew of my friend Retta in Ohio.... Aries is battling cancer and finally this week was allowed to leave Childrens and go home as his treatment continues.... God is so good...

We are watching the PENS play the REDWINGS and try to stay alive in the Stanley Cup.... go PENNNNNSSSSSS

Godspeed

Monday, May 26, 2008 11:51 AM EST

Memorial Day...2008

we are enjoying a quiet day at home....grilled some brats and dogs for lunch and will grill again later tonight for dinner....there was a huge party at the house across the way last night and the grocery store was very busy.... the next door neighbor left with his buddies for a day of golf...the pool is open and the water is clear and warm...but noone is swimming in the still chilly air....G is resting after a night of no sleep because of leg pain but otherwise feels good....

Today we think of the many who left the soil of our land to find themselves on a terrain far from home and unfamiliar...many who made this trek never again returned to walk on our land.....today we honor them and thier families....and keep them in our prayers....it is becuase of them that we have had the right and the privilege to partake on the journey....Godspeed

Sunday, May 11, 2008 11:51 AM EST

Psalm 139:13
You made all the delicate, inner parts of my body and knit me together in my mother's womb

The Mother of Mother's Day never herself had a child. 100 years ago Anna Jarvis gave birth to this special day at a quiet church service where Mothers were celebrated with a white carnation symbolizing maternal purity, or by a hand written note, or simply a day off...the Mothers Day Shrine just south of Morgantown, WVa symbolizes the first Mothers Day as May 10, 1908..the anniversary of the death of Anna's beloved Mother Ann Marie....this Mother's Day, I can hardly believe how blessed I have been in being given the children that I have...sometimes I think that they could have been anyone's children, anywhere...and they were by God's design, mine....each so different, each with thier own special design...Ashlee believes there is nothing she cannot do; Michelle is now a Mother her self and I am so very thankful that I could be there with her, when her little one arrived..Gary, growing, changing, strong and with a life experience that words cannot describe....

This Mother's Day I think of the many Mothers who I know personally who have not only been there when thier babies took thier first breath of life, but have sadly had to experience thier last breath of life... my own Mother has experienced this twice....my younger brother Gary, and my older brother Larry...one flying free as a child, the other later in life.... I think of Sherry...my dear friend in South Georgia who not only saw one little life begin but 2 at a time, twice! Kevin and Keith, Kenny and Kandace...my heart aches for her pain....my friend Carol...her son Jack is a very special angel....Barb who is the Mother of Jenna who also flies free...Chris Momma in Arizona, ...so many who today have only the memories of a child....all of our lives are more special and blessed because of these very special people...

Mothers Day is about joy... determination, possibility, hope, and strength.... where would any of us be without Mothers? Mending boo boo's with a kiss, healing broken hearts with a hug, planning futures with "I know you can do this's", building confidences with, "everything is going to be okay", and creating strong, smart new Mothers, and Fathers with, "I am so proud of you....my cup runneth over..."

Enjoy your Mothers Day......even if you have never been a Mother, I would bet you have touched a life as only a Mother can....from me and G, Granny, Toshie and Chels...Happy Mother's Day! Godspeed

Wednesday, May 7, 2008 4:46 AM EST

an early start to the day.... we are headed to the hosp for sugery...this time, not for G but for me (Lin)....will be an out patient deal....have a lesion in my leg that needs to come out...

G will check in with the docs today while I am in surg...his legs are swelling...hmmmm....

say a little prayer for Valerie who is also in surg today....much bigger than mine....much...

well, off we go....Godspeed

G here...Mom's surg went well and I brought her home. They removed a large lesion from her leg and one from her arm as well as 15-20 small ones. She is feeling good, tired and will need to rest. Thank you for your prayers.
Godspeed

Friday, April 25, 2008 5:48 AM EST

Gary...this little message is just for you....on this very special day...three years today....we celebrate your miracle, celebrate the life of your donor, and honor the brave and loving family who made life a possibility for you.

G.... I know that the days are not easy, I know that the knowledge of everything that can happen is very real for you. I know that each day you think about your friend Kevin, and seeing Jarett yesterday on TPN was hard and scary for you....most people go through thier daily lives without thinking of the possibility of dying.... I know that in your life dying is always a possiblity...I am so proud of you as I watch you and see that your focus is living, of experiencing life. Your courage, your positive attitude, your ability to reach outside yourself to the heart of someone else who is in pain, facing fears that are only known to you and the others who like you have faced the massive process of transplant, moves me and motivates me. When I think of all you have experienced, it overwhelms me. Sometimes my own mind cannot take it all in. Just 6 weeks ago Gary, we again experienced a miracle, the birth of our precious Grady, and tragedy, the loss of our beloved Kevin....we always say, miracles and tragedy walk hand in hand...... G, your life is a miracle......and because of your life others can see the possibilities! I love you honey and all of us are so proud of you and your ability to fight the fight....always know we are rigth here with you....we can do all things through God who gives us strength

and, all things are possible to a believeing heart.....Godspeed

Wednesday, April 23, 2008 10:32pm est

my mind is silenced by all the noise of the dancing memories that race through it of the past as we begin to glance in to the future.....in just two days we experience the mark of the third year of life, of hope....the third year since a family turned tragedy in to a miracle.....

Gary is looking better....he will return tomorrow for blood work and a visit with Dr Kareem....this will be followed in the next few days with a visit back to our AVN doc at Shadyside so we can talk about where we really are, where we are headed and what road we want to take as we journey to that place that is our future....another visit to the neurologist to talk about the continuing headaches, another visit to the doc to talk about those daily injections that still have not started.....hmmmm, for each day that goes by I wonder how much bone we are loosing.....

I went home last weekend to spend some time with Michelle and Grady....I smelled spring for the very first time this year out there at home on the farm.....the grass seemed suddenly greener, the trees seemed to be realizing for the first time that it is time to wake up....the aroma of fresh springtime filled the morning air....Grady and I got to dance around the kitchen and even had a nap or two together....Michelle on one end of the couch and me and our little angel on the other...life just cannot get sweeter than that......

as we come closer to this amazing Friday.....my thoughts are busy with so many decesions that must be made... my heart is over flowing with love becuase of the blessing that we have been given.....our journey continues....

Godspeed

Sunday, April 13, 2008 10:34 AM EST

it is a gray Sunday morning here in oz....cold has returned to the Pittsburgh region...it will be short lived, for spring is on the horizon, and will not fall to Mother Natures attempt at returning the daze of winter....

Gary's potassium improved with his blood work of Friday...starting this week, we are making a mental change of focus....the time has come to start thinking of heading home....we are nearing Gary's third year anniversary of his rebirthday, and this past year or so has proven to be as challenging and threatening as the days and weeks just after transplant....but I feel like we made it through the winter....and now as the warmth of the spring sun hits our faces...perhaps our focus needs to change.....perhaps the two to three per week trips for blood work and evaluation can start to become a conversation of extension....can start to become a conversation of heading home...this past week has caused me to reflect and recall how doors were opened for us to come to Pittsburgh, bringing Gary for his only hope, a last ditch effort for life knowing there was less than a 2 per cent of getting the call, and knowing that if the call came Gary may never make it off the table, knowing that at things are possible to a believing heart....
revelations this past week have turned my mind to ask God if He plans for us to return home...not for a few days, but for good, coming to oz for check ups only, and God forbid, if we should find our selves in trouble.....I have called upon a few of my prayer warriors, Carol, Sherry, Marilyn, Trudy, Judy, Diane....thank you all so much, to pray for direction, reflection, and quiet listening.....I as always feel an overwhelming need to act in God's will, to act in a way that is at His direction....the thought of returning to our beloved home town fills my heart with anxiousness; the thought of sitting in my loft with the window open with the old oak tree just outside, dancing in the breeze to finish the book; run, no race through my mind...at the same time I know there are many, many details to address.....it will all take time, coordination, establishment and provision.....It will take God's very present intervention....we have already seen the impossible become the possible, now are we about to see the improbable become.....

We are nearing Gary's third re-birthday.....in thinking of this, the first thing that comes to my mind is our donor family.....I think of this entire family but most particularly our Donor Mother.....for she has only memories, pictures, notes and so many other reminders of her precious baby.....I ask God to comfort her and somehow let her know what an amazing hero her son is and all that has been accomplished through their brave and loving decision....of all the lives that have been, and will continue to be touched, changed and saved because of one little 13 year old boy. I think of Michelle and Jason and little baby Grady, the possibilities and hope that he represents....God is truly so amazing....

Please continue to pray for our South Georgia family....the grief, the pain....and the pure missing that they are trying to endure as the days turn in to weeks.....time, it is going to take time. I spoke with Sherry and she is so thankful for the years that transplant added to Kevin’s amazing journey of life. She recently sent pictures of his service and it is clear that he touched so many lives and was and continues to be, as we know, so loved....

Transplant....it is not for the faint of heart, nor is it for the one who does not believe.....no matter what we face in our lives, and we all face so much, I know that we all must care for and nurture each other.....it takes a village. Please also pray for Kelley's Mom as she tries to get to Pittsburgh to be near Kelley (pre transplant) while she is in ICU....Godspeed

Thursday, April 10, 2008 5:00 AM CDT

"and with the morning comes light".....

what a simple little phrase..... but oh, so true
We are off to the hospital early, G's potassium has managed to take a hike....so, repeat blood work early and possibly an IV infusion.....

there are so many things happening right now in many aspects of our lives.....I will share details in the days to come, but request your expectant prayer as I work to sort through and find our next path....Godspeed

Tuesday, April 8, 2008 11:05 AM EST

as I write this notatation, captains log 4/8/08..G is in the capable hands of Dr Adam Slivka.... Kareem is worried that he could be in rejection given his bout of vomiting, and the return of lower right quad pain which increases when he eats....no panic, just wait.....in about three hours we will know....of course, pathology will have to come back, but.....

our friend Stella (Ohio) just told me via email that her daughter Kelley is back here in oz... Kelley is pre transplant and they have been working hard to actualy save her organs through a rigid and difficult intestinal rehab program....she is experiencing some huge problems and had to be brought back to oz....please keep this family in your prayers....also, think of our donor family as we near the three year mark of Gary's gift of love which gave him life....Maria, Jim, Angie, Karen, Jessie, Greg; please remember them all as well as our south Georgia family who continues to endure great pain....

also, pray for me as I try to stay on top of all that we experience and sometimes quite honestly, just feel like I cannot keep up and constantly think there is something that is going to fall through the cracks....but, one step, one breath, one thing at a time...I am happy to share that Tosha is returning to her old happy little onray self....God hears our prayers, even when they are for a little creature with alot of fur and four legs...

as I sit here waiting, saying a prayer that G will not bleed out during his procedure....I look around me....faces, some blank, some clearly not aware of what is really going on behind those big doors, some just drinking coffee, some irritated to be here....and then there are the familiar faces, the nurses who are so great in this area, anesthesiologits who are so careful to ensure that G will be asleep and give him some medicine to numb the skin feore those painful iv's go in....and of course, Dr Slivka....always with a smile, and the concern hideing just behind his eyes....cell phone calls, lap top computers clicking away.....life at the hospital....life, in our life.....the words come to my mind quickly, "it does not have to be perfect, it just has to be okay...."

Godspeed..

12:30 pm Biopsy is over, and went well, no sign of bleeding at this point, and Dr Slivka looked relieved...he did not see any rejection with his eyes... the only thing that he did see was undigested food...hmmmm, the stomach is not emptying properly.. but we will just set this piece of information aside until we see Kareem...now we wait for the reading from pathology....patience...g is sleeping off his anesthia in the recovery area.....I am thanking God for His mercy and for allowing a safe procedure and providing the capable hands that we depend on so much ...

Friday, April 4, 2008 6:35 AM EST

it has been a busy week for us here in oz.... blood work,Tosha's medical emergency, visit to the bone guy (Dr Yates, speciality AVN), MRI, med changes.....Gary is sleeping on this gray and rainy morning.....it was a long night of vomiting, headache.....funny how a long night equals a short night of rest.....hopefully today is a better day for G....

Godspeed

Monday, March 31, 2008 10:06 PM CDT

Gary and I took Toshie to the regular vet today ....thankfully we located a vet who is actually right next door to the hospital, just down the street from our home sweet away from home.... she thought Toshie is looking better, and we agree, clearly better than last night....but still not out of the woods....she still cannot keep water down, so per the instructions of the vet, we tried 50/50 gatoraide.....we will see how this goes....the vet was outraged at the cost that we we had to pay at the hospital....so thankfully, did not charge today to see Toshie.....G is a great care taker understanding that Toshie, like he is fighting pancreatitis.....it strikes me as odd that Tosha, who to most is just a little dog....but here we are, with two pals fighting the same fignt, using the same meds.....G said he knows how she feels when she tries to take some water and can't.....two little souls.....hmmmmm, it makes one wonder.....

G will see the AVN specialist on Wednesday..... we are still trying to co ordinate his injection treatments for his osteoprosis...seems like a long and winding road to get this completed...but we have been there before.....

G would like to ask that you keep our little Toshie in prayer...after all, God creates all creatures great and small....he would also ask that you continue to lift our South Georgia family...and his friend Jim who is in the hospital very sick from exposure to house plants....he hopefully came out of the ICU today and is off the vent.....

sleep well....Godspeed

Monday, March 31, 2008 1:15 AM EST

G and I just returned home from the ER.... this time, not for G....Tosha became ill today and by tonight was growing more ill...so it became necessary to seek emergency treatment.....a mere 4 hours and $600.00 later, we were advised that Tosha's liver numbers are through the roof...she has pancreatitus.....they told us that this runs common in Shelties and advised that she be admitted for two days for extensive treatment.....the $2500.00 cost to admit our little girl is more that our transplant budget will allow... so they ran bolus IV fluid under her skin to keep her hydrated (she cannot eat or drink anything for 36 hours) presented me with a prescription for the very same antibiotic that G takes when he gets pancreatitus, and G and I ran to Giant Eagle to get some Prilosect for her..... I offered to run IV's for her here at home and after the Vet's shock that I would suggest that, she realized that I truly understood Tosha's blood results and the digital pictures of her digestive system.... G was asking about her lipase, AML, etc etc... then we had to confess, we are transplant folks, we know the drill....Tosha is more comfortable here with us and we will give her the meds and keep her warm in her crate with her blankey....of course if she worsens, we will have no choice but to have her admitted to the ICU for intense care.....

Tosha is very special to G, to all of us....she does not have a mean bone in her little body...she is the happiest little dog and loves everyone she meets leaving them with a smile across thier heart.... Please say a prayer of healing for our little Toshie.....we need her to get well, G needs her to get well....Godspeed

Friday, March 28, 2008 3:24 PM EST

yesterday G had blood work round #2 this week....up on his FK to 5 mg, and up on the K dur.... his potassium is a bit low....Kareem has agreed that G should have an intestinal biopsy when Adam comes back from India in two weeks (I won't let anyone else touch him) as well as a look at his stomach....he is having right side (low quad) pain and we need to be sure that there is no rejection hiding in there anywhere......as much as we hate to have that biopsy...uggggg, but....at least he is here at our home sweet away from home and not an inpatient.....

last night we opened a very sweet box from South Georgia.....in it, news paper articles, pictures, cards....It is so hard to believe that Kevin now flies free in the heavens....my heart almost can't take it in.....it does not seem real.....Sherry told me that another young man who was also from Georgia who had a 5 organ about a year ago (we never got to meet his family since we try to stay away from the hospital as much as possible due to the high risk of Gary catching something)passed away afer Kev....miralces and tragedy, they walk hand in hand....again, we focus on the miracle, knowing that tradedy is out there, not far away....lurking, like a thief in the night

for now... keep our South Georgia family in prayer.... thier hearts are aching.....Godspeed

Sunday, March 23, 2008 7:19 AM EST

John 11:25-26
Jesus said to her, "I am the resurrection and the life.He who believes in me will live, even though he dies; and whoever lives and believes in me will never die.

the sunrise this morning was warm and beautiful on a very cold Pittsburgh, covered still with naked trees and frosty houses....as the sun rose I was thinking about so many who we love dearly who today march a new and difficult path....and thinking of those who's lives have been forever changed by events that were only allowed by God's grace....joy fills my heart that Easter is a message of new life, new begginings and the knowledge that eternal life is ever lasting.....no matter what our struggle, because of Easter, there is always hope....

Gary is sleeping alot as he continues to battle hemolysis...Monday he will have more blood work to see where we are, and then again on Thursday...if his bili continues to rise and his platelets continue to fall he will be admitted...we will hope that does not come to pass because there are so many bugs at the hospital....for today, we are off to church, and then are driving further out east up in the mountains to an Easter Brunch....Gary loves meat and we should find a few varieties there....he is anxious to watch the skiers "tumble" down the hills....

Have a blessed and Happy Easter.....Godspeed

Tuesday, March 11, 2008 10:19 pm EST

Before I formed you in the womb I knew you, before you were born I set you apart
Jeremiah 1:4-5

Yesterday at 12:02 pm Grady David Row made his entrance in to the world bringing with him, hope of life yet to come....He is perfect, and he, Momma and Daddy are doing wonderful....6lbs 5 oz, 18" long.....I have not had time to gather my thoughts on this amazing event and be able to sit and put them in to words....Gary and I were both with Michelle and Jason when thier little miracle arrived and I will forever be deeply thankful. Ashlee was flying, but shared in this moment of joy via the cell phone (she will meet her little nephew in person very soon)...I held Michelle's hand, which suddenly felt so tiny in mine as she delivered God's most perfect of creations with Jason at her side.....simply, amazing....We bow down with thankfulness and most humble hearts to the Lord God almighty to whom the glory of this little life is dedicated....

To everything there is a season, a time for every purpose under the sun. A time to be born and a time to die;
ecclesiastes 3:1-3

Throughout this amazing journey that is our life, I have often reflected on the fact that Miracles and Tragedy walk hand in hand....It saddens me to share that on the very same day that our little angel entered this worldly life, Kevin was awarded his angel wings.....Please keep our dear South Georgia family in your prayers as they endure this unthinkable pain and gather to celebrate the amazing journey of Kevin C Wade's life. Our lives are so much richer because our path crossed with this delightful, happy go lucky, giant hearted man. Kevin, we will miss you so and hold you forever in our hearts and treasured memories...to read Kevin's Obituary please copy and paste
http://www.thealmatimes.com/obituaries/

May God surround us all with love, peace, and hope....Godspeed

Sunday, March 9, 2008 10:59 AM EST

just as the sun shines through the gray clouds that surround the land of oz, Gary has improved as the culprit was identified, and treatment plans adjusted...this mothers heart is full of joy and thakfulness as G is returning to his old self.....Ashlee made it back to Cleveland early this morning and called to let me know she had landed safely but could not move her car.....after some sleep (she flew all night) she will head back to the airport to dig out her car.... Michelle and Jason as making final preperations as tomorrow in to thier lives will enter the baby that they have waited for and anticipated for so long now....they will no longer be a couple....they will be a family.....

I was so worried, yes, I said it, worried, the Gary would not be there for this momentous event....that I would not be there for this moment in Michelle's life that will never again be repeated.... but becuase of the intervention of God, his mercy, the fantastic guys in pathology who found the e coli, the quick response from Dr Costa and Dr Kareem.... g is getting out of here today....just two days after we were deeply concerned about what was attacking his complicated and fragile system....G has had fantastic nurses this admission and we are thankful to each and every one of them who played such a vital role in getting G back on his feet so quickly....

Your prayers are deeply appreciated....wthout this intercession, well, there would be no journey....we are off to the pharmacy to get new prescriptions including the continuation of a very strong anti biotic (G's blood cultures were neg bar today :) but he will need to continue treatment for at least two weeks) then, off to pack up and prepare to head for Ohio bright and early tomorrow......Please continue to lift Michelle and Jason and thier new little baby before the Lord asking for a safe delivery......I will up date the bridge and bring you all the very first precious pictures of our angel....Godspeed

Prayer Request: Kevin, Judy, our tz team and donor family, Maria, Angie, Warren, Jessie, Karen and Mike, Jim,Jarrett and so many others who today, at this moment continue to fight the fight....

Saturday, March 8, 2008 11:36 AM EST

Saturday morning and the rain is falling here in the land of oz....west of us, 4 hours away, Michelle and Jason are buried in the snow.... about 10 inches and still falling....the twp guys were calling to check in on them as they live at the end of a little dirt road, and of course the twp guys know that there is a little one on the way.....the little one for now has decided to just stay put...but...the clock is ticking..by monday if no baby, the doctor will set nature aside and take over....as I write this notation, the ice BALLS have begun hitting the window....the winter storm of 2008 has arrived in Oz....just to our north there is already 6-8 inches of snow....Ash is in Seattle.....safe and sound.....

I am feeling better today as Gary has improved...he was awake this morning, and even took some watermellon...brushed his teeth, washed his face and sat in the chair for a bit talking to Michelle....perhaps the strong antibiotic is getting ahold of our infection which we now know is e coli....most likely came from the urinary tract....looks like a visit to Dr Jackman is in order once we get through this....E Coli.... I am awaiting the results of this mornings blood work...this will tell us how the liver is doing and if it has decided to not gobble up all those red cells...thankfully the white cells are holding....knock on wood....hopefully, the bacteria count is down today.....like Michelle and Jason, we wait....

I am still holding out hope and praying that I can shoot to Ohio, go HOME, for the arrival of this very special and much wanted baby.....Michie is my baby, and in the countable coming hours will have a baby of her own....a more precious life event I cannot imagine.... Lord please allow me to be there.....have mercy on our family, surrond us with protection and love as you do each and every day, amen....

Continue to keep Kev in prayer.....Judy and the family of Michelle's friend Holly (Ohio)...Holly was expecting her first baby, just three weeks behind Michelle and suddenly without warning, she earned her angel wings taking her unborn baby daughter Zoey with her.... Please pray for this family as they endure an unthinkable pain.....

Godspeed

Saturday, March 8, 2008 11:36 AM EST

Friday, March 7, 2008 11:56 AM EST

Gary is extremly ill today...they are taking him to Ultra Sound to take a look at the kidneys....

Please pray for G today....last night we were very optimistic, things were looking better....

I am just trying to not panic today....there is a blizzard in Ohio...confirmed by Ashlee who is trapped at the airport (Columbus, Oh) trying to get to Seattle, Washington...she tells me that she canot see out the window of her hotel...Michelle is at work today but I have not been able to speak with her....

I was hoping that G would be better today and ready to escape...so that we could prepare to head for Ohio and have this baby....but..... Over time, through transplant, I have become somewhat of a control freak....I feel like if one thing comes unglued, everything will spin out of control.....I am reminded today, that having my babies who are the beat of my heart, spread out in many places, enduring many situations, living life with all it's many colors is very trying.... Lord, remind me that you are the master of the plan, know the finish from the start and all the steps we take in between.....

thank you for your prayers....... I will update later in the day, early evening.....Godspeed

Friday, March 7, 2008 2:03 AM est

G's ERCP went well, thank God... no complications...Dr Slivka found that the liver and the ducts are beautiful...no stone, no obstruction....thank God....

He feels like the sepsis is coming from the bladder or a UTI...hmmm, our new issue....but, we will take that over a liver problem... hopefully tomorrow's blood work will show us that we are headed in the right direction and the bacteria count will be lower or maybe gone (?) and hopefully the hemolysis is stopping....we will see what tomorrow brings for us....

Michelle and Jason past their due date yesterday and the doc said if the baby does not arrive over the weekend (along with the blizzard which is exactly what Jason predicts) he will enduce labor on Monday.... they are quite ready and we are all quite excited about the thought of our little angel arriving....it is funny how deelply a little life can touch your heart before you have even met....

Kevin continues his fight in South Georgia....please keep him and our South Georgia family in your prayers....also pray for our friend Judy back home in Ohio...her hubby Fred earned his angel wings yesterday morning... Fred was a deputy sherrif in our county and a nicer man you would never meet....Fred had a great laugh, and a huge smile and would give you the shirt literally right off his back....the heavens shine brighter tonight becuase his star is there.....Please keep Judy and thier entire family in your prayers as they suffer this painful loss....

Your prayers are truly appreciated.... you may not think about it and really realize....now....off I go for hopefully some much needed sleep.....Godspeed

Wednesday, March 5, 2008 9:29 pm EST

whew, I am just plain tired.....

Gary had a long day today... he needed blood, mag, potassium, his antibiotic, phos, and is alergic to all of them... so lots of iv benydryl....tomorrow morning will be the ERCP and hopefully a clue in to what ever happened to start all this craziness.....He does have our lap top in his room and the hospital is wireless now so he can see your greetings..... thank you so much for your notes of encouragement... I know his heart is lifted when he sees your messages here....

Michelle and Jason's baby, our little angel is due tomorrow....hopefully, the little one can just hang on a few more days....a snow storm is brewing for Friday and there are already blizzard warnings for Ohio.... omg......

our friend Fred was admitted to Knox and he is seriously ill and his organs are shutting down....Please pray for he and Judy.....for God's love and peace to envelop them....also please keep Kev in your prayers.... Maria, Jessie, Jarret, Warren, Karen, Greg, Angie....keep them all in your prayers.... they are all so brave, so cheerful, have such great smiles and have endured a hell that words cannot describe... and still they meet each day with an amazing sense of, well, appreciation, joy, and bravery......sleep well.... Godspeed

Tuesday, March 4, 2008 8:24 PM est

Call out to me, and I will answer, showing you great and mighty things, which you knowest not
Jeremiah 33:3

this little sentence, this little verse takes on a whole new meaning today for me....Gary and I headed back to oz early this morning, encouraged after yesterday's vomiting and 6.6 bili count, yellow skin and eyes....all which had been replaced by lighter skin, clearer eyes, (not perfect, but it doesn't have to be perfect, just okay) menatlly prepared for the neededle sticks, the iv's and a very long day....once the iv was in place, (a delicate process with G's tired and beat up veins) the blood work was drawn, the wait began.....then, suddenly out of the OR Dr Kareem returned to see G again... are you sick honey? is your belly hurting you? your bili is better today, but still at 3.3, are you sure you are not sick? No, I feel much better today Doc....but I do have the FK shakes pretty bad today...

well, honey I have to admit you because you are septic! What, where did that come from? Kareem fells sure that G has a stone caught in his duct work somewhere and that the infection, for whatever reason, is not manifesting itself with the typical signs....so, per Kareem, just lucky that G started vomiting and we pulled the blood culture study, "just in case",,,,,so tonight, G is on 12S, recieving IV antibiotics, increased steroids, and will have more bacterial blood studies pulled tomorrow....the hemolisys is showing signs today of improvement but will require very close monitoring so it does not sneak up on us and deliver a sucker punch....on Thursday G will undergo an ERCP....this will allow them to go in to G's transplanted liver and all of his duct work, looking for our problem.....

tonight we are thankful to the Lord for showing us what we had no idea was lurking in the dark and hidden world of Gary's very complex system.... had we not discovered this, within just a day or so, we would have been in a life threatening situation.... Dr Kareem is confident that we "found" this silent sepis in time to avoid organ damage or worse, organ failure.....things of which we knewest not...Please keep Gary in your prayers as we face yet another threat head on....Please continue to pray for Kevin and our South Georgia family.....Godspeed

Monday, March 3, 2008 4:40 pm est

as the sun is shining and warming the earth, melting some of the much hated ice away, I sit here on 7 west with g...he is resting after a day of sudden onset vomiting....a quick trip to oz, some blood work, some zofran, and a quick ultra sound...along with Dr Kareem's ever sharp eyes reveals, our old enemy, Hemolysis is back....this happens when the liver starts destroying the newly made red blood cells in G's system....the plan is to bomb with solumedrol, up the steroids back to 50, increase the potassium and come back tomorrow to see if we gained any ground.... Kareem does not want to admit G..there are too many germies here...too dangerous since we are kicking what is left of his immune system in the pants to drop it back down....they did addtional blood studies to determine if it is G's immune system causing the problem, or if it is the donor immune system as it was in the past....if you remember, normally, the two mesh... in G's case they both decided to hang out together... and sometimes, to disagree...after we get the counts back, we will know who needs slapped around ...for now, keep G in your prayers that our early and aggressive treatment kicks this problem in the sear of the pants before we find ourselves in serious trouble....

an update on Kevin.... Kevin no longer has any veins or access left for an IV or a line....so at this point, all meds have been discontinued with the exception of some morphine drops that he is receiving by mouth...this will hopefully stave off some of the intense pain...Please pray for God's loving Mercy for Kevin and his family....it is so very hard to see a dear loved one in so much pain, so seriously ill, and know, there is nothing one can do to change anything.....the world, believe me, has been a better place with Kev in it....his smile, amazing spirit, courage, laughter and huge heart are an uncommon thing....With all our hearts, we still believe, that where there is life, there is hope.... and all things are possible to a believing heart.....

Godspeed

Wednesday, February 27, 2008 10:00 PM EST

the snow has been falling so hard that it has been difficult to see...today, driving in the falling snow I was thinking about how it was rather like our journey...sometimes, it is just plain hard to see....

but at the same time, just as the sun sneaks through the clouds, the flying snowflakes......our positive mindset sneaks through the harsh words we must sometimes hear and G's smile pushes the difficult things in to another place...our hope is always the forefront, and for this I am so thankful...

We learned today that G's bone loss (seperate problem than the hips, knees, shoulder, and ribs) is far greater than orginally thought....and even thou G is taking oral medication and using topical prescription to battle this, he now must begin injections every other day.....G talked to the doc so I have to get the details, but for now, we are in the process of Dr Kareem giving his blessing for this treatment.....we must be careful adding any medication as all it takes is one wrong move, and the roller coaster is set in motion and out of control.... but, for tonight, we will find our smiles, and prepare our minds to handle the injections and addtional blood pulls....It is not a problem that we can just ignore....we must find a way to combat the disappearence of G's bones and we must do it now....if only they were as strong as his resolve and amazing spirit.....

Michelle and Jason called last night and the day is drawing near that our little angel will arrive....2cm and 50faced, head in the birth canal....Michelle and Jason are ready, and excited to meet thier new little baby.....we all have our phones on baby watch and waiting....Ashlee is flying back and forth between Cleveland and Boston...numerous times over the next few days....I have no idea how she keeps up with herself....

stay warm, brrrrrr it's cold out there....Keep Kev in your prayers as he battles on...he is thin, sleeping, and surrounded by his family and love....Godspeed

Monday, February 18, 2008 6:54 PM EST

I am happy to provide a little up date on Kevin... today he is awake and even ate some jello! Happiness flows.....one day at a time.....

Gary is doing well, trying to get rid of the coughing crud...as am I....his bone pain continues and of course we know why....our visit to the endocronologist confirmed his bone loss issues....some more blood work was pulled and as soon as it is back we may start on an IV treatment to try to rebuild lost bone....we are already actively treating with medications taken by mouth and per absorbtion through the skin.... there is no more agressive treatment than we are already doing....the next weapon is the IV drug....allthough quite honestly, seems a little like fighting a house fire with a glass of water....but....we will see... This treatment will not correct the AVN in the hip joints, the ribs, the knees (and possibly one shoulder now) but.....it may stop the bone loss in general in it's tracks....the good news is the bone loss post transplant has not increased....it is at a steady, or "stable" rate....haha... I love that word.... The hip issue demands further attention... so, we will team up with a specialist at UPMC Shadyside who does hips and deals with AVN.....Hip replacement will be a last resort as this will be an extremely dangerous surgery for Gary, or any transplant patient to endure....so, for now, we will continue with hot water therapy, massage therapy and get in to the AVN doc.......

we are just three weeks away from welcoming a new life in to our family... Michelle is doing great, and she and Jason are preparing the nursery...Jason cleared the room, Ashlee put the crib together, and Michelle supervised....job well done.....

sweet dreams ....Godspeed

Saturday, February 16, 2008 11:49 PM EST

Tom Matthews, in a book called Aim For the Heart says "To open your heart means risking it all – to experience great joy and profound sorrow"

Great Joy.....the call long awaited that had a very small chance to come....profound sorrow, knowing that another family also recieved a call that will never leave their minds....Great Joy~the amazing people that God allows one to meet while trying to find the path through an extrodinary journey...Profound Sorrow~ having to realize that sometimes we must set them free....Great Joy to experience knowing that you are involved with the finest physicians literally on the face of the earth....Profound Sorrow, to know that sometimes, even they cannot fix it when it is broken.....

all along this journey that G and I, our entire family really, and all of you have been on, many times I have said that miracles and tragedy walk hand in hand.....in our world, we try to focus on the miracles.....knowing more so than others in the world that tragedy is just a heart beat away; but even in tragedy, there is always a miracle....

Kevin's family took him home for a couple of days... I have no idea how they acomplished this, but for a couple of days, he was home, in his own bed.....perhaps not in his best physical interest per his Momma, but at the same time, best for his spirit....tonight Kev is back in ICU and extremely critical with pneumonia in both lungs...his numbers are bad, and he is on b pap to assit his breathing... I talked with Keith, Kevins twin and he said Kev is not awake....the tragedy that Kevin and his family are enduring as the hours ware on is not the legacy of his life....the miracle of his smile, and wonderful sense of humor~that is the Great Joy that is Kevin....Pray for our South Georgia family this night, tomorrow, and for the coming days....minute by minute they have been advised....that is the profound tragedy.....when a precious life comes down to minutes...

I will update in few days about G's visit with the endocronologist...the news was just as we had thought....she is looking in to some addtional treatment plans after pulling some more blood work (waiting on results) and advised us to seek council with an Orthopedic physician who specializes in AVN and hip replacement (Thank you Dr Britton for your kindness, support and guidance) Sometimes it is a little like sailing off in our little canoe heading out across the ocean...

Great Joy....Profound Sorrow.... it is impossible to have one and not the other.....Great Joy......love, the profound sorrow~not to love....~all things are possible to a believing heart Godspeed

Thursday, February 7, 2008 5:54 AM EST

the long awaited day has finally arrived.... we were greeted this morning by freezing temperatures after having a high of 62 just yesterday.... we were also greeted by G's very sore throat, congestion, and chest cough....not good....

so today, we will see the Endo doc, head for blood work and find Dr Kareem to have him take a look at G.....what sounds like the simple cold can be a very serious threat to G ... hopefully we will get on top of this bug before it causes great grief....

I have learned from our past experiences not to put too much weight in a doctors appointment...the most simple thing seems to take weeks, months to resolve, for decesions to be made, opinions to be formed....there never seems to be an immediate opinion or direction....I know, in the logic part of my brain, that this is becuase what we are doing is so very complicated, G's system is so complicated and there is no room for error....so today, I am asking the Lord for patience.....the one thing I am not very good at or blessed with.....patience.....

Please continue to pray for Kevin as he fights on through some very dark days surrounded by his family.....Godspeed

Monday, February 4, 2008 5:20 pm EST

5:41 pm Tuesday
Message from South Georgia~
On behalf of Kevin's family, Thank You to Everyone who is praying for Kevin. It means so much to us. Just keep praying. Kevin's future is uncertain at this point, he is in terrible pain and so weak. He is tired. We appreciate the prayers, more than you will ever know. Thanks Again !!
Kevin's Family

three more days until we see the Endocrnologist and have blood work done.....

Please know that you messages of love and hope that are being left here on the bridge for Kevin are being sent to him via e-card to the hospital in South Georgia....

thank you so much for your love and caring.....Godspeed

oh, by the way....WAY TO GO GIANTS!!!!! Take that you Patriots!!!!!

Sunday, February 3, 2008 9:13 AM EST

Our logic should dictate that it is easy to trust God when the world is looking upon us with favor...when vacations come together, pay raises come, and when the world and all that is in it seems to be right for us and those we love...even then, there are those who don't think of God...why would they? Life...is good.....but when suffering comes...the kind of suffering that leaves us questioning our very foundation....our beliefs in who we are, and more importantly who God is and if He is real?...It is then that we are forced to face the most difficult questions, the most difficult realities....without our knowing, it is during these days that we grow the most.....

a note from Gary...

G here~ Momma talked to Sherry last night in South Georgia...I was sleeping in my recliner....Momma said her voice was wavering, but she is strong...Kevin is very, very sick....and I don't know if I will ever see my buddy again, here on earth I mean...the hardest part is that he is in pain...most people have felt pain but I will tell you that the kind of pain I am talking about is the kind that causes you to not be able to breath. Not just for a minute or two but for hours hours on end. Even morphine, dilaudid, all those drugs don't take the pain away and they make you itch so bad it hurts. They just make you sleepy and let you go to another place to try to run away from the pain. I had a dream the other night that Kevin died. It woke me up....I thought I heard the phone ringing, but it was only a dream. Momma has pictures of our family on the the table. These pictures have moved alot over the past few years, every time we move to a new place. Ohio, Pa, Ohio, Pa, Ohio, Pa...and Kevin's piture with his son Payton is there...Kevin is my brother and my friend. I wanted to tell you about Kevin. Unlike me, Kevin was not sick all his life. He worked as a lineman for the power company in South Georgia. He would go out when the hurricanes tore down lines and put them back up. Kevin loved his job. Then, one day he got sick. Really sick. And now, after his second transplant (3 years Nov 2007), he is really sick again. Sometimes I wonder why if God is so good, why does he let some people get so sick? Why does he allow so much pain? And why does he let families suffer? Momma tells me that this happens because when we are at our weakest, God is at His stongest. And sometimes, someone we don't even know, will see how under so much struggle, we face life each day. She tells me that when people see me, they would not even know how many problems I have had or what I have been through. All they would see is my happy heart. Today my heart is aching for my South Georgia family. For Kevin. I hope that Dr Street and Dr Kareem can find a way for Kevin not to suffer anymore. I know they have more drugs. If you think of Kevin and I hope you do, say a prayer for him. Ask that God will have mercy and take away his pain and agony so he does not suffer any more. It makes you very tired, and makes you very weak. Ask God to help them find the right drugs and give them to him. Ask God to comfort his Momma Sherry in particular...just like my Momma, she feels his pain and cannot find a way to fix it. Most of all I want you to know what a great guy, what a great Dad Kevin is. He loves hunting, the Georgia Bulldogs, Wrestling, and Nascar (Dale Earnhardt JR, thats ok Kev) He loves to be outside, and love to putter around. He loves South Georgia, his son and his family. And, he is my brother and my friend. As Momma always says, all things are possible to a believing heart. Where there is life, there is hope. Sherry, Kenny, Keith, Kandace, Ken....I love you

I also want to tell you that Heather recieved her transplant. She is still in the hospital but making progress. We are thankful!

Godspeed

Sunday, January 27, 2008 8:30 am EST

yeah for me! I finally was able to add some pictures! The picture on that you see here is Gary having a little rest with Tosha (the one closest to him) and Chelsea....three pals....I added a picture of Gary and Kevin, Gary, Michelle and Jason, and Gary and Ashlee...

Gary has been resting and has had a quiet weekend...just a few more days until blood work...his weight appears to be holding it's own...is it possible that we are moving forward? We are hoping that we will get in to the Endocrinologist soon so we can get a handle on our bone issues, how bad or not bad it really is, where we really are, and hopefully start talking about action to be taken to combat the problem and resolve some of the pain...patience, patience....

(G here) Please keep my buddy Kevin in your prayers...he is very, very sick now and I am worried about him and all of his family. Also, pray for Heather...she needs her transplant now. Thank you for praying for me, and my friends...

Godspeed

Saturday, January 26, 2008 8:48 AM EST

in the quiet of a very cold January morning, I sit at the computer looking across the road, past the row of pine trees, through the white and naked branches of one sycamore in a group of oaks, to a cluster of homes which fall down the hillside....up on the next ridge over from our home sweet away from home, sits a hospital....not one of ours (UPMC), but one that leaves us in the path of the nightly sprinkles of light of life flight.....Gary has had a good week.....I sit in the silence with a thankful and quiet heart.....he will have blood work afer just a few more days of being on his current dose of steroids (we are down a full 10 mg from where we started) This morning he looked slightly thinner, but his color good....as I see the homes that cover the landscape across the road and down the ridge, I wonder what the families over there are facing today.....to my amazment, I have discovered that there are a few tz families here in our area.... funny..... it seems that the transplant meca that was Oakland has moved east in to the base of the Laurels....it is quieter here than in the city....and we are thankful that we have been allowed to be here, a little farther from oz

I look to the naked trees and and snow which covers the hillsides, and think back to the warmth of South Georgia....not just the temperature, but the hearts of those who are there...Kevin is seiously ill and just two days ago nearly had to be put on the vent because of the difficulty he is having breathing....I talked to his Daddy and his heart is heavy but remains faithful and hanging on to hope....the days and nights of watching, waiting....watching....agony....Sherry...if you happen to stop by the bridge, know that we love you all so much....and we continue to lift Kevin before the Lord and hold you in our arms

On morning news they spoke of how the "stomach virus" is hitting this area quite hard....fear emcompased me....stomach virus...otherwise known as Rota Virus appears to be lurking again with the cold air that has surrounded the entire area of oz.... As February sits out there waiting for our arrival, I pray that God will protect us through this time and keep IT far from us, and us far from IT....keep it far from ALL of us to whom is poses such a threat....Rota Virus.....the manifestation of the devil....we are nearly a year in to Garys climb out of the horrors of Rota....we never want to return ....

A couple of updates from home....Dean's tumor was removed relativly simply, thank the Lord, but they did find some "spots" on his liver... we wait to hear back from his biopsy...and a note from my friend Rosemary telling me that Leroy Watters earned his angel wings...we all worked together at Dana....Leroy always wore a smile, lived his life his way, and was a freind to all who met him quick to help anyone he could, however he could. I recall his eyes filling with tears when we talked about bringing Gary to Pittsburgh to await organ transplant..Leroy, it was certainly my pleasure to know you and call you friend....

Please continue to bring so many before the Lord....there is power in prayer....just the act of speaking to Him envokes untold power....Kevin, Maria, Jessie, Jim, Karen, Angie, Warren, G, our donor families, Heather, Greg, Hugh....so many, many more..... Godspeed

Sunday, January 20, 2008 8:27 am EST

Great Physician, we ask for the healing of body, mind and spirit of our dear friend Dean Streby. Reveal any hindrances to his healing to the eartly physicians who will care for him and remove this tumor. Provide courage to his family to trust, believe, and feel your presence and comfort in the days to come. In Jesus name... Amen

today I recieved an email from Jane Streby in Fredericktown, Ohio... her husband Dean, who was the postal carrier in Fredericktown for longer than many of us have been alive is going to Riverside Hospital for surgery to remove a tumor in his colon....Dean is a special person who I have never once seen frown....he is one of those people that if you are blessed, you meet once in a life time.....today, tomorrow, this week....Please join us to lift Dean, Jane and this entire family in prayer......

Godspeed

Friday, January 18, 2008 7:36 PM CST

“One word or a pleasing smile is often enough to raise up a saddened and wounded soul.”

it has been 11 days since G's improved check up....in the 11 days, he has had one bad day when pain wracked his legs and back.....the other days there has been pain but manageable with pain meds, massage, hot water therapy, rest and heat.....his weight is holding, but not without a fight...this is a process that is taking time, persistance, hard work and a postive frame of mind. G's skin continues to be a force to be wreckened with, but that too...a battle we will win...forward we march....

G talked to Kevin on the phone just a night or so ago...Kev's Momma had plugged the phone in near the hospital bed in South Georgia so Kev to speak to G if only for a few moments....over and over I heard Gary speak Kevin's name...Kevin, Daytona is just around the corner, Kevin, you have to get better, I know....I know....it is okay Kevin, you have to keep fighting....you can come stay here with me and Momma in Pittsburgh, I miss you Kevin... you have to get better, did you talk to Kareem....two pals walking on a road that even with a map cannot be found unless you are there, walking....walking

Sherry sent an email to tell me Kev did remember talking to Gary... he did not remember talking to his brother Ken, but he did remember talking to G.....I sit here now and look at the picture of Kevin and his son Payton....Payton is 7 years old and the pride of his Daddy's heart...a brave young man....just like his Daddy

being here in oz has been a struggle for us in many different ways....sometimes it all catches up with us...with me... and I have to search deeply to find the strength to carry on, to walk through another day....sometimes the feeling of exhaustion overwhelms me and it seems like if there is one more little thing placed on my plate; one more little drop of water in my bucket; one more little egg shell in my basket....I will surely colapse.....but then I think about how blessed we really are.....the miracles that fill each one of our days and how hard we have fought to reach this point....even in the struggle, and on the darkest days, I know that we in deed are the lucky ones......to Chris's Momma in Arizona... we have not forgotten you, we have not forgotten Chris, we never will...we send our love even today

We had quite a scare this week as Granny had to have a repeat mammogram and ultra sound...she is a cancer survivor of 40 years and the the doctor called me and told me that he had fear that "they saw something" in her mammo just before Christmas...G and me along with Granny walked bravely in to the hospital here in Pittsburgh (which G thought was a little strange becuase this time he was not the patient), our hearts filled with hope, our anchor firmly planted, and our faith in tact....just two hours later we were told....everything is okay....Praise Jesus for His mercy.....Just a few weeks ago Granny's sister in law passed away in Iowa from an aneurysm....around the same time her brother in law was diagnosed with cancer....today, we learned that Granny's brother Glen earned his angel wings after a brave battle with kidney failure....tonight Uncle Glen has recieved the ultimate healing and we Thank God for His tender love and grace.....

It is to be extremely cold this weekend...our plan is to keep G warm and hope his bones do not feel increased pain from the dropping temperatures.....please pray for so many who are in pain and have such need tonight.... for Aunt Bonnie as she endures the sting of the loss of Uncle Glen....Godspeed

Wednesday, January 16, 2008 4:36 AM EST

I recieved an update on Kev..... he is back in the ICU after managing to stay home for 10 full days... Kevin and his brother (twin) Keith turned 39 on January 11~Happy Birthday Kevin and Keith... the road is long, the battle fierce.....but the heart..... limitless

Godspeed

Saturday, January 12, 2008 4:58 am EST

as I sit here wishing I was sleeping, I hear a few cars going by and wonder where everyone is headed on this early Saturday morning...I think about G sleeping peacefully and thank God for this gift....Gary looks great right now....better than he has ever looked in his life I think...perhaps we are truly making progess.....and at the same time, there are those bones.....well, one thing at a time....I have decided I will once again attempt loading some recent pictures on the bridge this weekend.... we will see if I can pull this off....

I have not had an upate on Kev but will post it as soon as I do...thank you for your continued prayers for our South Georgia family....enjoy your weekend...Godspeed

Monday, January 7, 2008 6:38 pm EST

AN AWSOME CHECK UP FOR G! Praise God for His Mercy!!

Gary had an awsome check up today... at long, long last!! Dr Kareem felt it is safe to cut the steroids by 5 mg each dose which in a day will be 15mg less going in to his system....everything else stays for now, don't want to make to many changes at one time.... don't rock the boat as they say...... we will cut the roids starting tomorrow, this takes us down to 40mg 3x per day... still high, but 10 mg from where we were....Glory! One little step at a time... ROCK ON G!!!!! We are still awaiting our call from the bone doc....but today, we are nothing but happy....

We are in a fight with insurance again over two of G's meds....maybe I should contact all those folks who are running for president and talking about health care for all....hey, how bout spending a little time in this world and get a real taste of healthcare???? well, that is a battle for tomorrow, for today, we are watching the BUCKEYES and just letting peace surround us that Kareem feels G is ready to start moving forward with weaning the roids down further....Lord, have mercy on us, and hold G in your arms, keep him steady and stable as we move ahead in faith...Amen...

GO BUCKS!!!!! Godspeed

Sunday, January 6, 2008 6:52 pm est

okay... I have been Brittany Spears to death.... I can't take any more! Seeing her picture on every newscast for the entire weekend did however provoke a thought....Why I wonder is this news???? Isn't that great that Dr Phil ran to her side??? I am sure the hospital has a psychologist on staff. Perhaps they were busy...well anyway, the thought was as I wonder why this is news, what about Maria's story??? What about Angie's story??? What about Kevin's story??? What about Warren, Gary, Jim, Karen, Jessica, Jarret, what about Kelly's story, and Greg, Jenna, California Jenna, what about the families that made gut wrenching decisions in an effort to make the worst pain they have ever known mean something, count for something...what about care providers who sacrifice without boundaries???? Why are these guys not news??? Is it because their stories are so big, so time expansive, unbelievable??? Or is there not a reporter who can get their arms around it??? What about the physicians who work when they are so tired that all they can do is manage to walk in to a room, eyes black with evidence of another long day which followed the one before, minds clear and focused....the nurses that sometimes leave the hospital with the tears still damp on their face....why is this not news???? If you are reading this and you are media...please, please tell me...God in heaven for the life of me, I just do not get it

tomorrow bright and early, (thank goodness this is my personal favorite part of the day, and thank goodness, Gary does not mind waking early) G and me will head to oz...I know that Gary has gained enough weight that we will not be talking about TPN...at least not tomorrow...it is amazing to me how quickly his weight can flucuate..up, down, down, down, down, and suddenly, up...well, we are thankful for the up....we will however talk about bones....bone pain and if his color is good when Kareem see's him we won't talk about that..if it is not good when we see him, we will talk about that...we will talk about his blood work and where we go from here... is it safe to attempt to cut his steroids a little bit more??? this is imperative because of the issues that they are causing with his bones in particular, his ears (which by the way today are showing signs of improving, but please don't say that too loud), his eyes

I too will see the doc tomorrow (after G)...ugggg, the orthopedic surgeon... I crunched my left knee in a fall recently, and well, it is pretty messed up... will see what the good doc has to say....

Yesterday my Aunt Fran and Uncle George celebrated 50 years of marriage! Congratulations to them and Godspeed as they face together a serious health crisis with Uncle George...he is fighting cancer...but for today, no cancer...just a groom of 50 years!

Please continue to keep Kev and our South Georgia family in your prayers..... his battle continues

Our beloved Steelers lost last night against the Jacksonville Jags.....the press is beating them up pretty good...but G and me, Granny too, would like to be on record as saying we love our Steelers!!! The Buckeyes play tomorrow night in the National Championship game...GO BUCKS!!! Gary is counting the days until the boys roll their cars back out on the track in Daytona....what I love is how he is always looking forward.....praise God for His amazing spirit and strength......

Sleep well, sweet dreams.....Godspeed

Tuesday, January 1, 2008 6:58 AM EST

Happy New Year! Wow, 2008....it seems just a year or so ago, everyone over the face of the planet was scurrying to protect themselves and their computers from the turn of the M....2000..... wow, that was 8 years ago......

2008....reflection, forward thinking, optimism, hope, and faith.....perhaps, mostly faith......as the remaining 364 days of 2008 unfold, our wish, our prayer for everyone is first of all, health....salvation, and a sense of adventure....G and me, our entire family, have been on an amazing journey, and if you are stopping by to visit or have mentioned us in prayer; even though you may not have physically been here in oz, you have been on the journey with us.....together we have walked the valleys, climbed the mountains, and look forward to the future and whatever it plans to deliver.....the future, and all it promises to bring....a new baby (Mich and Jason), perhaps a new marriage (?)(Ash and Andrew), amazing milestones (G - 3 years post tz), new friends, new life, new promises, new understanding, renewed hope and celebration of all the gifts that God has allowed.....

We hope that you can celebrate today with vigor and faith.....that is not to say that the world in which you walk everyday is perfect or easy, whatever perfect or easy is...but to look forward with promise in your mind, faith in your heart, and compasion in your soul...

Enjoy the journey.....2008....a year to be great...Godspeed

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