Come celebrate his life...

Come join us in the celebration of the life of Marshall H. Kosoff (also know as Grandpa Marshmallow) on Sunday, February 21, 2010. Memorial service at 3pm at the Lakeland Hills Community Center at 5801 Lakeland Hills Way, Auburn, WA 98092.

We will have a "Marshall-style" BBQ following the service including steak, baked potato and salad. Kordell is in charge of beverages.

He's gone.

We love you Dad! We will miss you!

It's time to let him go...

After an incredible fight, Dad has decided to turn the machines off tonight.

It's so hard to let him go. Hospice will make it peaceful.

Please pray for his comfort.

Surgery on the artery

This morning Dad has surgery. It went well and he came out ok. They went through his stomach which means he is going to be in a lot of pain once he wakes up. There is good news and bad news. The good news is the artery that was bleeding a few days ago is no longer bleeding, the bad news is the artery that was bleeding a few days ago is no longer bleeding. Which means the source of the internal bleeding is unknown. For now they will watch him closely, keep him comfortable and hope his blood count goes up over the next 24 hours. If it does not correct itself then they will do a Colonoscopy. We will update the blog as soon as we know more. Thanks again for all of your prayers.

Happy 67th Birthday DAD!

With balloons, two colorful birthday banners and jazz music blaring in the background we celebrate Dad's 67th birthday here in ICU. You can hear the music from down the hall, but no one is brave enough to tell us to turn it down. We are determined to make this a great day for Dad regardless of how disobedient his body is being.

They have been watching him closely the last 48 hours. He had a decent night with no major incidents. His blood count went slightly up which pleased the doctors. As for now they will continue to watch his blood count and as long as it is the same or a little higher they will not do the surgery. We will keep you posted.

We are trying to keep his spirits high. He had a lot of calls from people wishing him a Happy Birthday. The nurse was trying to cheer him up when she put water on a swab and told him to imagine it was cupcake flavor. She said she didn't think he was amused. I guess it was the thought that counts.

Happy Birthday Dad! We love you!

Not out of the woods yet, but better!

He is much more alert today which is great to see. His coloring is so much better. Yesterday he was white as a ghost and his eyes looked so distant. His vitals are back to where they should be. Hallelujah! His kidneys are better, but not quite where they need to be. But at least he is stable. His blood tests show there is still internal bleeding. They decided to avoid the coil procedure and move forward with the surgery. This morning they asked his permission to do surgery on the artery if they have to. We will know more later today.

Our biggest concern was how aware he truly is. The nurse said they did a brain function test on him and he was able to blink correct answers that indicate he is still totally coherent of everything. He is one stubborn guy, obviously not willing to give up!

I will update when we know more. Thanks again for your prayers!

It's time to PRAY again!

Just got an update from the nurse...

We were told Dad was going to be transferred last night at 4pm. We were sad to hear at the last minute he was not going to be transferred to Rainier Vista because they had not had a final signature from the doctors. What a blessing that ended up to be. This morning at 4am Dad's blood pressure and heart rate went dangerously low. They discovered he was bleeding internally which presented itself through his rectal tube (sorry for the details). It was pretty scary for several hours. They put another camera down his throat to determine it is an artery that is bleeding. They used epinephrine to close the artery. They will watch him closely to see if that is enough to stop the bleeding permanently. If he begins to bleed again they will do a procedure where they put a coil in the artery. Unfortunately this procedure has only a 50% chance of success. If this does not work they will do a more invasive surgery to repair the artery. Since he is not a good candidate for surgery we need to PRAY the epinephrine stops the bleeding.

Again, what a blessing he was not transferred to the nursing home last night.

He has had 3 units of blood already and they are planning on one more. He is stable but still critical. On top of everything else his kidneys are not working. Let's pray he has a better night tonight! Thanks for all your prayers!

Keeping him comfortable

The last few days Dad has been requesting more and more morphine. We want him to be comfortable, the only problem is he pretty much sleeps the majority of the day now. I admit it is nice to see him resting peacefully, I just miss playing charades with him.

They tried the speaking valve a couple of times yesterday. He began to feel anxious saying it was hard to breathe. I don't think Dad realized that even when they hooked the vent back on they didn't turn it on so he was still breathing on his own. Hopefully over time he will get more confident with the speaking valve on and the vent off.

It looks like he will be transferred to Rainier Vista either today or tomorrow. We will keep you posted.

Hurray for the Saints!

Sunday was a relaxing day for Dad. He was really tired from going all day Saturday off the ventilator. Our cousing Angela (Zan's wife) visited Dad in the early morning and Vicky and Devan hungout before the game. Kordell and Nancy came to watch the game with Dad, but he fell asleep before halftime. Uncle Larry called before the game and made a bet with Dad. Even though they both really wanted the Saints to win Uncle Larry wanted to bet Dad $5. So Uncle Larry took the Colts. Lo and behold Dad is 5 bucks richer. He was happy to hear the Saints won this morning.

The doctors have decided not to do another procedure on Dad. I hope it's the right decision. He will be discharged in the next few days to Rainier Vista Care Center. It is the best long term care facility in Western Washington.

It sure has been nice having my sister Vicky here. I know Dad has enjoyed seeing more of all of us. What is amazing is how a tradgedy like this can really bring a family closer. Next time you think you are too busy for your mom, dad, brother, sister, aunt, uncle or cousin remember there may not be a tomorrow and to MAKE TIME!

The best day so far!

Saturday was a great day in many ways. Dad was able to be off the ventilator for just over 9 hours. On top of that he used the speaking valve the entire time which takes a lot of work. Just hearing his voice, even if just above a wisper, makes us all feel so good. Not to mention it takes away most of the frusration of not being able to tell us what he needs.

He was able to not only tell us what he needed to make him more comfortable, but he told us how great the nurses have been (except one) and he wanted to know where Nancy (my brothers girlfriend) had been. She's had a cold and didn't want to give it to him. He used a few choice words, which I had no idea, but apparently Dad has always spoken like that when I wasn't around. I guess if I were in his situation I might want to say a few choice words too. On a much sweeter note, he was able to ask Susan if she would stay with him until he fell asleep. She is being so strong for him. I know going home to an empty house with just the dog Shamess is absolute torture for her. What we would both give to go back to the first 3 days when we just thought it was a R-side stroke. Then at least he could go home.

Dad is still very much in pain. The new bed he got is a better bed to help with bed sores, but not good for back pain. Even on the morphine he still hurts. It's so unfair that the paralysis doesn't just take the pain away. It really is the worst of both worlds.

The results from the G.I. test on Friday came back and they didn't find what they needed. Which means they may need to go back in (from the other end if you now what I mean). I guess it means he will get to stay in the hospital a few more days. We should know more tomorrow.

Kordell, Nancy, Vicky and Devan are going to watch the Super Bowl with Dad today. We asked him who he wants to win and he said plain as day, "The Saints!"

Thank you to all the family in town who came to see Dad:
Daughter, Vicky from Idaho
Grandson, Devan from Oregon
Nephew, Keith from Rhode Island

G.I. Procedure

The G.I. procedure went well. They cauterized an ulcer to prevent any further bleeding. Hopefully this is his last procedure at the Hospital. Now we wait for his final discharge date. He slept most of the day.

Vicky and her daughter flew in from Boise lastnight and her son Devan came up from Portland. It is nice to have them here.

Dad appreciates all of the comments and visitors. Thanks again for all the prayers!

It was good day...

Although Dad was too tired to be off the ventilator for any length of time today, it was still a good day. It's getting easier to read his lips and take care of his basic needs.

He did ask to use the speaking valve for an hour or so. Each time he uses the valve he has to be taken off the ventilator. Today he requested the usual water in his mouth, ice packs to help cool him off, reposition his head and then he reminded me to call Sue and tell her to sign some paper work. Very cute. He told me his eyes are bothering him. Double vision is part of a brain stem stroke. That may explain why he isn't that interested in the T.V. It was time to find Dad a nursing home, which brakes our hearts. We wish so badly he could go home. Unfortunately he requires special 24 hour care with ventilator capabilities. There are only 6 nursing homes in the State equipped to take patients on a ventilator. We looked very carefully at the two within an hour drive and chose the one in Puyallup. It is right in between Sue, Kordell and I. We are expecting him to be released early next week. We are still working through some other issues such as an ulcer that is bleeding. He will have a procedure done tomorrow to scope his GI. Hopefully this will be his final procedure and he can be discharged. Personally, I like him being in the Hospital where he has his very own nurse. But, it would be great to start some PT, OT, Speech and other rehab that they will begin once he arrives at the nursing home.

Christopher's visit

Dad, Christopher and Sue






Dad was pretty tired from practicing with his breathing valve yesterday. They waited to put the valve on until just before Chris arrived. We all knew going into it that this may be the last time he sees our Dad, but of course we pray it's not. We raised $325 to pay for this emotional 2 hour visit. He was accompanied by two very polite armed guards.

Dad's final words to Chris was to "Be good and take care of your Mom." Then before he asked to be put back on the ventilator he said, "Goodbye Christopher." That pretty much killed us all.

A special thank you to all who gave donations to make this visit happen!

Miracle #2 - Speaking Valve

We are all beginning to feel like we are bipolar. We're up, we're down, we're up, we're down. It's like the never ending roller coaster ride. Today is another great day. Dad started his third breathing trial today. It went so well they took him off completely with just oxygen put through his Trach. Then they decided to put the speaking valve on. It works! Although it is as quiet as a whisper, you can hear him! I half expected his first words to be "Give me a beer." Much to my delight he simply said, "Put water on my face." After 3 or 4 times he had me put a wash cloth on his face and just leave it there for a couple of minutes. When I was done he said, "Thank you." It was pretty awesome.

It takes time to learn to use the valve. You take a breath and say one or two words and then take another breath and say one or two words. They said once his lungs get stronger he will be able to speak louder through the valve but for now we take the whisper.

You can tell he is getting tired. This is the longest he's been off the ventilator. It would be like you or me on a treadmill for hours on end. They will probably put him back on soon just to give him a little break. Like any muscle the lungs should get stronger over time if he keeps practicing until they wean him completely off the ventilator.

The real trick now is making sure he doesn't get pneumonia or any other major infection. As if the bed sores aren't enough to worry about. His internal thermometer seems a little better. He hasn't requested to take his clothes off today. Yes, he literally demanded Sue take all of his clothes off. He was NOT happy when they said, "Marshall, that is not allowed." My Dad is not normally that kind of guy so he must have been really hot! Actually it's the nerve sensitivity that causes pain like when your foot is asleep and it becomes prickly. We believe that is what makes him so uncomfortable at the end of the day. Unfortunately Dad has the worst of both worlds, he is paralyzed from the neck down but can still feel the pain.

Well, our goal is to have more than one great day in a row. We hope tomorrow brings us more miracles! One day at a time!

A smile for Roni!

Today was a quiet day. Dad was still tired from yesterday's excitement. He was 45 minutes into his 2nd breathing trial without the ventilator when he told the nurse with his lips that he wanted to "GO HOME!" He apologized to Dad saying he wouldn't be able to go home and Dad got mad at him. Because he became very anxious they had to give him some medicine to calm him down. When I got there he was sleeping and he pretty much slept for 3-4 hours. He was waking up a bit just before I had to head home to get the boys off the bus. I asked him if I could take this picture for Roni (Kordell's daughter). We all miss his smiling face!

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!