Sunday, January 31, 2010

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!

Saturday, January 30, 2010

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.


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.

Friday, January 29, 2010

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.

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!

Thursday, January 28, 2010

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.

Wednesday, January 27, 2010

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.Justify Full
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!

Tuesday, January 26, 2010

Let the fight begin!

Late last Sunday night Dad and Sue were watching T.V. when she heard him shuffling his legs around. She described it as "restless legs". She asked him what was wrong and he said, "I don't know, I don't feel well." When she began asking him basic questions he couldn't answer her. So she called 911. Once the EMT arrived his blood pressure was high but his blood sugar was normal. They suggested to Dad that he go with them to the Hospital. He didn't want to go. They proceeded to tell him, "Sir, you can either go with us or with your wife, but either way you need to go." So, of course he said Sue would take him. The EMT said to Sue before they left, "Now, we are going to drive by in half an hour and you promise that Jeep is going to be out of the drive way." She said, "Yes!"

Dad walked into the ER on his own two feet but quickly after arriving told Sue he needed to sit down. It was obvious he needed to be seen quickly and it wasn't long before they took him back. The next few hours his condition worsened and it began to look more like a stroke. By 3am they were convinced it was a stroke even though the MRI was not showing any abnormalities. At this time the symptoms only presented on the right side of his body including his arm, leg and face.

Sue called me (Melanie) at around 9 am to say Dad was in the hospital. I immediately called Kordell and we drove straight to the hospital. When we arrived he was visibly upset (understandably so). He joked about not being able to making it to work. For those of you who didn't know Dad has been working at our gymnastics gym 3-4 days a week. He loved the idea that he was a janitor just like his Dad. He even joked at our staff party a couple of weeks ago when he introduced himself to the other 26 employees that "Even after all these years, I'm still picking up after her!"

Although he could speak it was with a slight slur. His blood pressure and blood sugar were very high. They began to treat it like any other stroke. He was kept very busy with OT/PT and Speech. He was able to stand on his left leg during PT and although very vocal about how ticked he was he still had his sense of humor. When the nurse would leave and say she'd be back he would say, "Don't worry, I'm not going anywhere, I'll be here when you get back."

On Tuesday they did more tests (MRI, cat scan & an ultra sound on his heart) and still no proof that it was a stroke. His blood pressure and blood sugar were still very high. He was still able to eat the delicious hospital food (ok - he really hated it), but was aspirating on liquids. So they thickened up all liquids but he was still able to swallow on his own. He started to have trouble finishing a sentence with out taking a breath. The doctors began discussing a "long-term rehab" room on a different floor where he would begin intensive rehab.

On Wednesday he was really tired. He was no longer able to stand on his good leg during PT. His appetite was gone. Whether he didn't want the hospital food or he was afraid to choke he refused to eat. His breathing became much more labored and you could hear the liquid in his chest when he took a breath. He would try to cough and his muscles just wouldn't do it. His blood pressure and blood sugar was still very high.

On Thursday the paralysis began presenting itself on the left side and he was really starting to have a hard time breathing. When I spoke to him that night you could hardly understand him at all. The Doctors said he would be moved to ICU in the next day or so. Now they weren't so sure it was a stroke. It certainly was an unusual case. They began to suspect Guillian Barre Syndrome.

I arrived at 8:30am Friday morning. When I got to his room it was empty. I went to the desk and asked where my dad had gone. She said, "Oh-I didn't realize you were family. Your dad has just been moved to ICU." She tried to prepare me for what I was going to see. Let's just say it didn't work. I walked into the ICU and straight to his room where there were half a dozen doctors around him. He was in respiratory distress. I just stood there in the door way and looked at all the doctors. His original doctor saw me and said, "You need to hurry and come see your father, we are about to inti bate him." I quickly gave him a kiss on the cheek and told him I'd be here when he woke up and they rushed me out. It was an awful sight, one I will never forget!

Sue was on her way to Hoquiam to tell Christopher about Dad. I called her to tell her she needed to get here now! His original doctor walked by and assured me "He is not dying. We sedated him and he will be asleep most of the day." Then she said, "You should just go home for the day." I thought, "Whatever lady, I'm not going anywhere!" I called Vicky and my mom so she could get a hold of Kordell. Regardless of if "he wasn't dying" right then, I knew it was not good. He was very unstable. Blood pressure was high, blood sugar was high, on a ventilator and his kidneys were not working either. We decided Sue would go see Chris since Dad wouldn't even know who was there. Chris needed to know what was going on.

Brooke came up from Oregon with Roni and Kordell Jr. (Kordell's kids). Sue arrived around 5pm along with many other family and friends. Including the entire Powell family. Nancy (BIG Kordell's girlfriend) drove up to Kordell's work to drive him to the hospital.

They did a spinal tap to find out if the Guillian Barre Syndrome or some other infection was causing the paralysis. Again, they did not believe it was a stroke. We spent the day waiting for the results. At 7pm when they kicked visitors out for the shift change Sue and I went to the desk and asked Dad's nurse if the results were back. She proceeded to tell us the results were negative for Guillian Barre. We then asked her what was next. She said, "I'm not sure the neurologist doesn't work weekends." WHAT! You mean to tell me there will be no more tests until Monday. In my most polite but very angry voice I said, "We aren't going to do anything else until Monday? Does that sound right to you?" She said, "I'm sorry that's all I know." As you can imagine this was not what we wanted to hear. We went home very discouraged!

Saturday morning Dad's brother Larry drove up from Oregon to see him. It was great to see them together for the first time in a long time! I know that meant a lot to Dad!

Due to the weekend he had a new crew including a pulmonary doctor and physician. THANK GOODNESS for this new crew! His nurse was named Susan and was amazing. Between her and the pulmonary doctor they decided it was an urgent matter and they would FIND a Neurologist to come in and help Dad. Finally, someone who saw the urgency! They even went as far to say, "If we can't get one to come here we will transfer him where ever we have to to find a Neurologist." Within an hour a new Neurologist was there. He looked through dad's charts and interviewed Sue and Dad. We had discovered that dad could answer yes or no questions by blinking his eyes. Within 5 minutes of being in the room this doctor did a test on dad's eyes and because of how they moved he stated conclusively, "He has had a stroke in the center of his brain stem."

FINALLY! An answer to what is causing this, so we thought.

Vicky flew in from Idaho and Devan (her son) drove up from college in Portland. All the kids and grand kids were together.

Sunday was a fairly relaxing day. We felt somewhat relieved that we knew what it was and now it was time to let his brain do the work to repair what had happened. Thanks to Kordell discovering that Dad needed his glasses we watched football with him all day. Unfortunately, neither of his teams won. I kept blaming his high blood pressure on Farve not winning the game for the Vikings! He was tuckered out and didn't even watch the overtime.

Monday we arrived to the original Neurologist saying he wanted another (#5) MRI to confirm the stroke in his brain stem because if it didn't show up then he wanted to do more tests to see if it was in fact Guillian Barre Syndrome. WHAT! We still aren't sure if it was a stroke or not? Talk about a roller coaster ride.

The results came back and the Neurologist came to find us and asked us to follow him to a conference room. It was obvious this was not good. We sat there as the Neurologist began to explain that the MRI was abnormal and he did indeed have a stroke in the brain stem. He went on to explain that worst case scenario is that his current state (total body paralysis) and on a ventilator may be as good as he gets. Knowing Dad's wishes we all knew Dad would not want to live on a machine the rest of his life. We were devastated!

Sue, Nancy and the Neurologist went in to tell Dad what they found. He surprised us all and said he was not ready to give up the fight. We (the kids) were all relieved to hear this. Because we too are NOT READY for him to give up the fight!

After we all gained our composure we went to see dad. We spent the day with him playing a game of Charades. It was fun for us, but probably not much fun for Dad. He had a lot to say and so we spent hours going through the alphabet to find out what words he wanted to spell. Our first word was IRE which was suppose to be ICE. He wanted ice on his neck. He went on to request everything from SCOOT MEUP to WATER. We kept asking him if scoot meup was a name? Finally we saw SCOOT ME UP. He rolled his eyes. We really hope he gets to speak to us again so he can tell us what he was really thinking! He went on to request we call Larry (his brother) to wish him a Happy Birthday. He also spelled JIMMY ALASKA FUTCH BEER STRAW. Sue remembered a friend of Dad's in Alaska who was in a wheel chair with a trake and he use to drink beer through a straw. I think a nice cold glass of beer is his motivation. Some habits die hard or not at all.

Today dad had a heart procedure to check for the cause of the stroke. They put a camera down his throat to his heart. He did well but they didn't find anything. He's been sleeping most of the day. He's pretty tuckered out with all the visitors. We just want to make sure he remembers all the reasons he has to live!