UPDATE - what a great day!

Here is Dad having the ventilator removed and oxygen hooked up to his Trach. He was so excited to get out of his room for the first time in a week. Way to go Dad! You did great. Although the stroll was short (and painful due to the sores) it was exciting.

They left the ventilator off even after the stroll. I'll keep you posted on how long he stays off it. It is a huge step in the right direction. Even if this is as good as it gets it is a good sign that he will eventually be able to speak through the Trach.

Baby steps! Hurray for baby steps!

Thank you to Sue's sister Kathy who just left this morning to go back home to Illinois. She was a huge help to Sue and Dad and we look forward to her return! (No pressure - ha, ha, ha!) Nancy is going to keep Sue company to make sure she eats and rests when she can. Thank goodness for all the caring people around us to make sure the basics are taken care of!

Zan, Angela and their family stopped by today. Kordell and Nancy too. Devan stayed the weekend and was a great help to Dad as well.

He is resting now. I think breathing on his own takes a lot of work, but how great it is!

Miracle #1

I came in this morning and looked at the respiratory screen that tells how much work the ventilator is doing and lo and behold he had been breathing by himself for several hours. The ventilator assisted only at the end of each breath to reopen his lungs for the next breath coming in. He, however, was the one taking the breath. It is a huge step and truly a miracle! It is just the beginning of many baby steps he will need to live off the ventilator but the first bright spot we've had in many days!

Devan and I just help swab his tongue to quench his thirst or reposition him in his bed, but for the most part he sleeps. Between naps he requested we spell something. So we started with the letter A and he squeezes his eyes shut when we get to the letter he wants. It takes awhile, but we eventually get there. The challenge is to get the word before he gives up out of frustration. We started with W-A- L- L. He rolled his eyes as if to say "No you dummies." Then he lipped "start over" and I got it first try. So we started with W then we got W-A-L-K. He wanted to go for a walk. I said, "OK, I will ask, the worst they can say is no." So, I asked the nurse and she said, "OK." Hurray for Dad!

It was about that time that the respiratory therapist came in to proclaim dad was doing great without any assisted breaths provided by the ventilator. He wanted to do a breathing trial and take him off completely and try using just an oxygen mask. It was perfect timing for his walk/stroll. It is just a trial to see how he does. So at 2pm he will be moved to a wheelchair and taken for a stroll. This is so exciting! He was grinning from ear to ear! Talk about lifting his spirits! You really could see the joy in his face (and ours)!

Thanks again for all of your prayers. I will read him all of your comments so please send a note in the comment section! Just put in your email address and it will let you comment.

Will update later today on how the walk and breathing trial go!

The Diving Bell and the Butterfly by Jean-Dominique Bauby

2008 Olympics Sendoff Party

Sue, Devan (Vicky's son) and I spent most of the day helping Dad stay comfortable. He is still in a lot of pain from the Trach and feeding tube. His nurses have finally started letting us use the swab to wet his tongue and suck the water back out. He is so thirsty and there is no other way to quench his thirst. Although he doesn't have a fever today he is still hot. I finally convinced the nurses to let me plug in a small fan to help him stay cool.

He didn't have a lot to say today other than he was thirsty or wanted to be adjusted. For the first time in several days he let me read the newspaper to him. He also wanted me to read him the blog. The Pulminary specialist did not feel a breathing trial was necessary today. He is just not strong enough. We hope the surgeries are the reason for his lungs being weaker. It may take a couple days for him to get his strength back.

Feel free to send an encouraging note in the comment section here on the blog and I will read it to him.

LOCKED-IN SYNDROME

The Neurologist who declared Dad's stroke to be a brain stem stroke called Dad's condition the "locked-in syndrome". He said there was a man named Jean-Dominique Bauby who wrote a book about it after his brain stem stroke. If you can imagine he wrote this book one letter at a time. He recommended we read it.

I wanted to pass on the information about the book so you could check it out. Here's what I found: This Parisian journalist Jean-Dominique Bauby suffered a stroke in December 1995, and when he awoke 20 days later he found that his body was almost completely paralyzed: he could control only his left eyelid. By blinking this eye, he slowly dictated one alphabet character at a time and, in so doing, was able over a great deal of time to write his memoir The Diving Bell and the Butterfly. A few days after it was published in March 1997, Bauby died of pneumonia.[13] The 2007 film The Diving Bell and the Butterfly is a screen adaptation of Bauby's memoir.

For those of you who don't know what locked-in syndrome is I copied this off wikpedia:

Locked-in syndrome is a condition in which a patient is aware and awake, but cannot move or communicate due to complete paralysis of nearly all voluntary muscles in the body except for the eyes. The condition has been described as "the closest thing to being buried alive".

Locked-in syndrome usually results in quadriplegia and the inability to speak in otherwise cognitively intact individuals. Those with locked-in syndrome may be able to communicate with others by coding messages by blinking or moving their eyes, which are often not affected by the paralysis. Patients who have locked-in syndrome are conscious and aware with no loss of cognitive function. They can sometimes retain proprioception and sensation throughout their body. Some patients may have the ability to move certain facial muscles, most often some or all of the extra ocular eye muscles. Individuals with locked-in syndrome lack coordination between breathing and voice. This restricts them from producing voluntary sounds, even though the vocal cords themselves are not paralyzed.

FATHER by Christopher Kosoff

Happy Father's Day Dad!

Dad is resting now from his feeding tube surgery. It went well.

Our brother Christopher (Sue’s son from a previous marriage) is currently incarcerated. The only father Chris has ever known is our Dad. He’s been a part of our family since he was 2 years old. For those of you who have not had the opportunity to meet him he is a great kid (if you consider 28 to be a kid – man you know you’re getting old when you call a 28 year old a kid). Chris was in the wrong place at the wrong time with the wrong people and because of one bad decision he has to go through this devastating time alone. Every Friday for the last 7 years Dad has gone to visit Chris. So as you can imagine how difficult this must be for him to not be here with Dad right now. Check out the poem he wrote for our dad.

FATHER
By Christopher Kosoff

A father is a friend
A father is a teacher
A father is pure love
A father is respect
A father is a protector
A father is a man of lessons
A father is your first fishing trip
A father is your first home run
A father is your first touchdown
A father is the only man who can make you cry
A father is the one who teaches you honor
A father is the one to have the “birds and the bees” talk
A father is our first and only real hero
A father is our strength
A father is who we all wish to be
I wish to be a father too
I wish to be a teacher
I wish to be pure love
I wish to be respect
I wish to be a protector
I wish to be a man of lesson
I wish to be a man who I know
There is a lot I wish, but only one wish do I hope comes true.
“I wish to be the father you have been to me!”
You are my smile, you are that light, you are my friend, but most of all you are my Dad, and I LOVE YOU!

The Trach is in!

All went well with the Tracheotomy!

Although he is sedated he just opened his eyes and moved his lips and tongue to feel for the tube that is no longer in his mouth. I can only imagine what a relief that is. Tomorrow he will have a feeding tube put in his belly. On Saturday they plan to turn the ventilator off for a short time to test his ability to breathe on his own. We hope and pray he will be able to breathe on his own. Unfortunately, the doctors do not think he is strong enough to live without the ventilator. They do hope he will be able to breathe well enough to speak through the Trach.

We will continue to pray for him!

Through thick and thin...

To love and to cherish, through thick and thin.

10:00 a.m. - Dad is in better spirits today. He has a fever which may delay the surgery for his Tracheotomy. Thank you for your prayers.

Please continue to FAST and PRAY!

12:00 p.m. update - The nurse discovered the source of his fever is a sinus infection. They decided to move forward with the surgery today. We are waiting for the surgeon now.

Please FAST & PRAY for dad!

2008 Olympic Trials

Dad, Sue, Ethan, Drew and Camille

Dad is living his worst nightmare! He and Sue spoke many times about if Dad were ever being kept alive by a machine to just let him go. Some of you may be thinking that very same thing right now. It's easy to say when you are speaking hypothetically, but what about in reality? It's also easy to say when your mind is not intact and you're in a vegetative state. But Dad is very much there! Can you imagine laying in a hospital bed trapped in your own body with nothing but your eyes to communicate? No control over any part of your body including the ability to breathe and swallow.

Dad surprised us all including Susan when he told the Doctor he did not want to be taken off the ventilator. He's made it clear he is not ready to give up the fight. At first we were all relieved. Now as we watch him suffer we can hardly bare to see him tortured like this. He has so much to say and no way to say it. He's hot, thirsty and hungry. He wants so badly to move and yet his body won't listen. He is getting more and more frustrated and you can just see the sadness in his eyes and yet again today he said he was not ready to give up the fight.

Sue and I sat with the Palliative Physician today as he asked us Dad's wishes. He explained the options and gave some recommendations. He then took us up to Dad's bedside and explained it all to Dad. He said tomorrow we would remove the ventilator and see if he could breathe on his own. If he wasn't able to breathe well enough on his own they would then put the ventilator back in and do a Tracheotomy. Once the ventilator is removed they will find out if his swallowing reflux is working. If he is able to swallow safely and he can breathe on his own then he would be home free. If not, they would have to put the ventilator back in and do a Tracheotomy. He was breathing mostly on his own this morning so this was favorable news. We felt very encouraged.

A couple of hours later the Pulmonary specialist came to see Dad. She declared after reading the days charts she was not comfortable removing the ventilator. She did not feel his lungs would support him and she did not see his lungs improving beyond this point. UGH! What devastating news! I could see the air come right out of him. It was awful! Once the Tracheotomy is done then they will do a trial breathing test without the help of the ventilator. We pray he will surprise us all. Please PRAY and FAST for dad that a miracle will occur! He will get his Tracheotomy first thing tomorrow morning.

I just wish the Doctors could be blunt and honest and then say, BUT miracles do happen. Not give false hope just don't close the door completely. Everyday he has made small progress. Today he moved his big toe on his left foot and tilted his head forward. Until he goes without any progress I think he should keep fighting.

It makes us wonder, is he fighting because he wants to or is he just doing it for us?

Please FAST & PRAY for dad until noon tomorrow!