Merry Christmas from Heaven

Today, at Church, a special lady gave an ornament to my mom, for our family. The ornament is pewter and says "I love you all dearly, Now don't shed a tear, I'm spending my Christmas With Jesus this year." and is accompanied by this poem:


**click on it to make it larger!

How beautiful is that? Thanksgiving was so hard and when my husband stood up before we ate and said "I'd like to propose a toast to Kraig......" we all cried. The Christmas season has been even tougher but we continue to go on. As he would want us too. We continue to find strength and love and hope in Jesus as well.

Wishing you and yours a very blessed holiday season.

xxoo

Tough Day

10 weeks
70 days
1680 hours

since my dad left this earth. two things i've come to know since his passing 1) i'm no longer afraid to die and 2) life does go on. we all miss him so much and some days are harder than others but i hold onto the belief that we will be united with him one day.

my sister and i continue our journey w/ RCIA. i am finding much comfort and peace in Jesus. it's been so good for my family and especially for my children. funny how i never understood my fathers time and devotion to his religion when he was here on this earth.

what's a post w/out a photo? this was last summer. a glass of wine, a sunset and a view of the lake. i think you can see how much he loved those things.

and a song......

.Thank You.

I don't know if anyone comes here anymore but as I lay in bed last night I was thinking of this blog and of all of you who visited, cared, prayed, gave us strength, shared your own tragedies and triumphs and left beautiful heartfelt comments. I miss you all and I wanted to say THANK YOU, for everything. You've no idea how much it's all meant to my family and I through this difficult time.

I will start the RCIA program Monday night, w/ my husband as my sponsor. My sister will be attending as well, w/ my mom as hers. The kids will be taking religion classes at the same time. They started last week. I find it ironic that my father found his faith, after he lost his father and the same thing is happening to me. I feel my father's presence when I'm at the Church. I feel close to him and connected. He would be so proud that we're doing this. I wish I could walk the walk w/ him but I KNOW he knows---I know this b/c before school the other morning, my son asked me if I had a picture of Noah's Ark and I went upstairs and got his Boy's Childhood Bible that my dad gave him on Easter last year---and as I opened it---there was this hand written note, to Carter, from my father, but I couldn't help but think, it was his message, that morning, to me, that he was so thrilled that "those babies were getting religion" (he always would say that to my mom "those babies need religion" but not to me---he didn't preach).




Then out of it, fell this picture---it's my dad holding Carter when he was just days old.





Of course I cried but what a treasure for me to find. I will cherish it always as I have nothing in my father's handwriting.

If you are reading this, it means you're still stopping by, still thinking of us and for that I thank you.

xxoo

Service in My Dad's Hometown

Yesterday we went to my dad's hometown for a memorial service that his mother and sister planned. It was BEAUTIFUL. There was a gathering in the Church Hall afterwards (thank you Kim for all your hard work w/ the food and set-up and clean-up and to everyone else who contributed as well). The Reverend spoke of my Dad as if he'd known him his whole life. We sang "How Great Thou Art" and "On Eagle's Wings" (my Dad loved both of those songs). My Dad's twin sister read a poem, from a book that belonged to her Uncle, that he had left for her.

God's Will for you and Me!

Just to be tender, just to be true,
Just to be glad the whole day through,
Just to be merciful, just to be mild,
Just to be trustful as a child,
Just to be gentle and kind and sweet,
Just to be helpful with willing feet
Just to be cheery when things go wrong,
Just to drive sadness away with song,
Whether the hour is dark or bright,
Just to be loyal to God and right,
Just to believe that God knows best,
Just in his promises ever to rest--
Just to let love be our daily key,
That is God's will for you and me.

~Anonymous

My sister got up and spoke and she did a beautiful job. I wish I had a copy of her words to post here. Perhaps I can get a copy next time I see her. I got up and read "I Wish you Enough"......you might remember it from an earlier post.........it was an e mail I found, that my Dad had sent me a few days before the stroke, that I hadn't read. In lieu of flowers, we asked for donations to go to the youth center, b/c it was so important to my Dad. That said, I wanted to share with you some words from the Deacon at the Church:

Kraig knew all of this. He knew how important scripture was and he read and lived it every day. he reached out to many people of our community of Holy Cross Church. He taught scripture to our children. The parents of an 8th grader told me that when their daughter was in Kraig's group in the 6th grade, his teaching of scripture changed her life. She is only one story of many. Kraig single-handedly ran a middle school youth group in our old youth center. He has laid the foundation for our new youth center, The Underground, that is almost completed. Kraig's legacy will always be there in the Center. (A NOTE: One of the entrance walls to The Underground will be a white wall, like a white board where the kids can write stuff to each other, and erase it later. We will name the wall The White Wall! The wall will include a dragonfly in honor of Kraig!).

If you don't know........my Dad's last name is White. Thus the "White Wall". How cool is that? It makes me so happy to see things happening in his honor and to see that this is part of his legacy! Also, my sister and I will be going through the RCIA program at the Church starting next week. I wish I had walked this walk w/ my father while he was here on Earth but I didn't. I know he will be proud. I intend to stay connected to the the Church, his home away from home, and in doing so......to stay close to him. I hope I can make a difference there someday, the way he did.

.The Service.

My fathers funeral was yesterday. It was a beautiful service and a beautiful day and a wonderful celebration of my fathers life. It was also one of the hardest days of my life.

A few weeks ago I found, online, this story about a dragonfly. I read it and tucked it away. When my father passed, my mother said "I just wish he could give me a sign that he's okay......why can't he do that?" and I instantly thought of the dragonfly story and said "I know why......" and I read it to her. At that moment, I knew I had to include it on the programs for the Church Service. Here is the story....

**double click on image to view larger

After I decided to use that story I was seeing dragonfly's everywhere I turned. Flying around me at the Church the day we made service arrangements, I drove by "Dragonfly Cafe" where there was a big dragonfly on the side of the building and when I came home I saw Delaney's pink bike helmet in the garage that has dragonfly's all over it. I took it as a sign that my father's soul had made it's journey to Heaven and he was letting us know he was okay. Then at the service when Deacon Hawk did the Homily I was touched to hear him use the story and build upon it. At the cemetery, as we gathered around for final prayers and goodbye, a dragonfly came, flitted around, landed and hung out on the flowers atop my father's casket. That dragonfly stayed the entire time we were out there.

The Eulogy I gave my father, it's short but I was asked to keep it 3-5 minutes long by the Catholic Chruch:

If my father were here today, he'd say "look at this beautiful day God has given us" because that's how he started his day, whether it was 20 below or warm and sunny. Today, is the perfect kind of day to celebrate his life. Thank you all for coming.

I remember when my Grandfather passed away and my father was preparing his eulogy. He was so nervous about getting up in front of everyone and wondered if he'd make it through it without breaking down. Today, I completely understand how he was feeling. Like father like daughter with the fear of public speaking.

The fact that you're here means my father has touched your life in some way and I know I don't need to tell you what a wonderful man he was or how much he loved his wife and best friend of 40 years, his children, his grandchildren and the rest of his family, the Red Sox, Sunny days, a walk on the causeway or a glass of wine with his friends.

I know every little girl thinks their father is the best dad ever---but mine truly was. He was the kind of father who played the guitar and sang silly songs to us, who made homemade fudge on Christmas Eve and the best pizza ever. He told the silliest tall tales. He once got his then 3 year old granddaughter to watch an entire Red Sox game by telling her the catcher was Barney the Dinosaur. Those of you who knew him well knew he had an innate ability to tell a story. He could take a 5 second story and make it last 5 minutes, with his arms going and all kinds of expression in those kind blue eyes of his. We'd all smile and roll our eyes, grandchildren included. This morning, I asked my daughter, Delaney, "what's something silly you remember about Poppy?" and without hesitation she said "remember how Poppy would always pretend he was missing a finger and he would tell me that a turtle bit it off?" I'm going to miss those stories.

We can't forget his sense of humor, which we saw glimpses of, right up until the end, even though he didn't have much to smile about. For example, 2 days before he passed away I sat and did a crossword puzzle with him. I said to him "horse blank, 4 letters". He held up his hand and put up four fingers, one by one and said "crap". So Dad.

The other night my 8 year old son, Carter, came to me and sat on my lap and cried and said "why did God have to take Poppy?" and as I searched for something to tell him, to help his broken heart feel better, I felt a sense of peace as these words came out of my mouth, because I knew, in my heart, it was true.......

"God loves Poppy so much that he took him home to be with him. Poppy tried to get better, to come back to us, to be with us but he was just too sick. He's in a better place now and he's happy and I know he's looking down on us. He'll always be with us in our hearts and minds but we're sure going to miss him being here with us."

My wonderful friend Jan sketched this portrait of my father for me. I will treasure it always. Thank you Jan!

**click on photo to view it larger

The arrangements........

You can read a full obituary in tomorrows Burlington Free Press.

Visiting hours will be on Friday, September 4th from 4-7 p.m. at the Mountain View Funeral Home on Pinecrest Drive in Essex.

A mass of Christian Burial will be celebrated on Saturday, September 5th at 11 a.m. in Holy Cross Church in Colchester. Burial will immediately follow.

In lieu of flowers we would like donations to go to the Youth Center at Holy Cross Church.

Homesick

sent to me by a friend. thank you. it's perfect xo

Finally Home

My Dad passed away at 2:45 this morning surrounded by all of us. We are going to miss him so much but we know he is whole again, no more suffering, no more pain.I'm certain he is out for a nice long walk right now w/ his father---who is showing him around heaven.

We are making arrangements and I will post them later.

Xo

Bad News

My Dad had another bleed this morning. Bigger than the last one.He is back at the hospital and they are keeping him comfortable.There is really nothing they can do. It is just a matter of time.He'll be going "home" soon. Pray for strength for all of us as his journey comes to an end.

It's been so long.......

since I've seen my Dad like this that when Delaney said "mom, look at Poppy" while this flashed across my computer screen it stopped me in my tracks. It's hard for me to remember him any other way than the way he is right now. I am going to print this and put it by his bed side as a reminder to the staff that THIS is my father and as a reminder to my Dad to SMILE. I know he doesn't have much to smile about these days but a little positive energy can go a long way! Funny thing is......I've never seen these photos before. They are from Carter's birthday last summer and were still in RAW format tucked away w/ the other unprocessed shots from the day. I'm not sure why it came up on my slideshow, as it's not in the slideshow folder, but it did........and I needed to see this........I think the whole family did.

I'm not quite sure what he's doing---although I think it's his version of "hang 10" turns "call me", lol. He's a goof.

Day 64

So many signs that the summer is coming to an end. School starts in 3 days. The pools are closing. The days are getting shorter and cooler (I noticed last night it was dark at 8:00). The fair is in town. Tuesday is September 1st. The summer of 2009 is one I will always remember.

Yesterday I took my dad down to the kitchen/waiting room. I told him there was a computer in there and would he like to do anything on it. He said that he'd like me to pull up redsox.com and then I asked him if he'd like me to find some information on Remdog for him (Remdog is an announcer, for the Redsox, who has been away since May w/ lung cancer and depression. My dad LOVES him). He said yes. He hates having to wear that helmet (he will need to wear it anytime he is out of bed, until the bone is back in place and we are not sure when that will be) but I kept reminding him that all great athletes wear a helmet to protect their heads. Ivan---thanks for the Redsox sticker.

My dad continues to make progress. yesterday he was making his chair go by himself w/ his foot and hand. He grabbed the handrail and put his foot on the floor and thought he was getting up. I told him all in due time. Of course he's frustrated and confused at times. Still trying to piece things together and make sense of it all. He's hasn't been sleeping great either. He and I did a crossword puzzle together yesterday (he is a crossword guru) and he amazed me. I said "____ Moines, 3 letters" and he said "DES, D-E-S" and then I said "Air Force One......3 letters" and he said "jet" and "dispensable candy, 3 letters" and he said "Pez, they still make that stuff?" then I said "horse _______" and he thought for a minute and said "crap". Haha. That sense of humor shines through.

I know many of you have expressed your wishes to come visit him but we think he needs more time. We don't feel like he's emotionally ready to have visitors other than family right now. We'll let you know when he feels up to it. In the meantime, your continued prayers mean the world to us and him.

xo

Just Smiling...........

The last few days have been so good for my Dad, and in turn, for all of us as well. He has really found his voice and has been talking a lot and making perfect sense. He even told my mom "yes go away" when she asked him if he wanted privacy. She didn't take offense and we were both so glad to hear him express his wishes. He told the PT that what she was doing hurt his back (he has a terrible back and we just knew it was bothering him) and when one of them spoke very loudly to him and repeated herself twice he said "I heard you" (lol). My mom told him this morning "Lisa doesn't think you remember her" and when I came in later that afternoon he looked right at me and said "I know who you are, I remember you!". It had obviously been on his mind all day. I cannot tell you what those words meant to me. He's really become aware of himself and his surroundings and is very concerned w/ who is doing what to him. It's truly amazing the changes taking place every day.

Keep those prayers coming---they are being answered. As always, THANK YOU!

P.S. I asked him "Dad, how old are you in this picture?" (the picture on the header of this blog) and he answered right away "8" and my heart kind of sank. I said "Dad, you are 62 here......" and he said "6 and 2 are 8". I just now remembered that the night of his birthday he looked at his cake and said---"I'm 8?" and I said "sorry Dad, I didn't have a 2."

Sorry I haven't updated!

Gearing up for back.to.school (1st and 3rd grade this year) and trying to enjoy these last few days with the kids, although I have to be honest, I'm looking forward to the break and getting back to my Photography business.

Physically my dad's getting stronger daily. He's been outside a few times and my mom said he really enjoyed that. He's been spending time in a chair, sitting on the edge of his bed and holding his torso up unassisted for a bit. I haven't been to any of his sessions yet but my mom says he has improved so much from when I last saw him try to do this in the hospital. He really seems to like the girls who are doing OT and PT with him and even gave one of them a smile when she asked for one.

Mentally he has his moments of clarity and then other moments not.so.much. For instance, yesterday, after a day of not speaking much and mostly ignoring everyone, he said to my mom "I'd like to get back in bed please" and at that time his mom and sister came in and my mom asked him if he knew who they were and he said "Geri" (his mom) and "Kathy" (his twin sister) and then he looked at my mom and said "Sherry". Then his mom said "you have a brother in Texas" and he said "Kevin". Then he looked right at his mom and asked "what happened?". He seemed to remember up to the point of going down for his stent surgery but nothing after that. They assure us this is pretty normal for what he's been through and it's going to take some time. That said, I wish his mom and sister lived closer b/c he really does seem to have great moments of clarity when they are present. It makes you wonder where his memory is, at this point in time.

I won't pretend that it's easy when your father doesn't seem to know who the heck you are---but you quickly remind yourself that it's not important right now, it's not about you and you imagine what he's feeling---but how can it not break your heart? It's all heartbreaking. I'm having moments of clarity myself these last few days and I'm realizing that NOW comes the hard part---for all of us---especially my dad. I'm willing to bet that what he's been through, can't compare, to what lies ahead. We need to stay strong, keep the faith, be supportive, PUSH and never quit.

I hope to make it in tomorrow or Wednesday morning to meet the girls from OT and PT and see how my dad's progress is going. More then.

As always, thanks for your thoughts and prayers!!

xo

My dad loves this song-- he sang it to his granddaughter Jillian when she born and through the years while he rocked her. Once he sang it to her new baby brother and she got so jealous. That didn't happen again.

All settled in!

When Rick and I walked into my Dad's new residence for the upcoming months, he looked right at us and said "hi". There were many things my Dad did today that tells me, w/out a doubt, that he is the same old Kraig and that he understands everything. I think he finds it comfortable there. He's got a nice sunny room all to himself, a fan and NESN comes in on the t.v. -- what more can a guy ask for?

In all seriousness though--we think it seems like a fabulous place. His nurse had a talk w/ all of us, my Dad included, and said his nurses will wear regular clothes b/c it is important for him to see that he is not sick anymore, this is not a hospital. She said therapy is going to be long and grueling---it goes 8-4 Monday thru Friday (obviously there are rest periods in there) with weekends off. They encourage family members to be present during therapy. At the end of her speech she said to my Dad "are you ready to get busy?" he answered her by smacking his hand on his pillow as if to say "damn right I'm ready". Tomorrow a.m. bright and early he will put on his t shirt, shorts and sneakers (w/ help, of course, for now) and get busy getting busy!

REHAB!!!

So last night I was visiting my Dad. He was out of it still and had a rough day. Around 9:00 p.m. he seemed to be sleeping comfortably, finally. The nurse came in and said they would be moving him to rehab tomorrow (today) so I looked around his room and began to gather some things that I needed to take home, such as the Hello Kitty CD player Delaney so graciously lent him ("Mommy, you don't need to buy a CD player for Poppy---I'm not using my Hello Kitty one--- he can borrow it" God love her) and as I looked around and said goodbye to one of my favorite nurses I was hit with this wave of emotion. I can't really put my finger on what it was. A mixture of things, I suppose.

Relief, that he was finally well enough to move on?

Fear, that he'd be leaving the safety of the hospital?

Sadness, that I wouldn't see those few nurses who were "angels" on the inside anymore?

Empathy, for my dad, for all he'd endured and all the hard work that lay ahead of him?

Thankful, to God and all of YOU who have been praying for him and supporting us.

7 weeks
53 days
1272 hours
No matter how you count it
It's time that none of us can ever get back.

BUT, he is finally going to get busy living again. I have tears flowing as I type this.....I have always been so proud of my Dad but I can't even begin to tell you the new found respect, love and pride that I have inside my heart and head for this man. He is truly a gem. His faith, his will, his prayers (& ours) and skilled Doctors and nurses have gotten him this far and his faith, strength, determination, fabulous therapists and his family will help bring him the rest of the way.

So happy to finally turn the page and start a new Chapter. This chapter I like and can't wait to see the wonderful things to come! As I type this, Dad is probably getting ready to be transferred into that ambulance that will take him to a place that will slowly bring him back to his life and all of us.

xo

“But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.” Isaiah 40:31

‘Do not fear, for I am with you; do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, surely I will uphold you with My righteous right hand.’ Isaiah 41:10

Seizure!

I just happened to be across the street from the hospital this morning at the Dentist office for a cleaning--when the hospital called my cell to tell me that my Dad had had a seizure. They put the metal trach in this a.m. as he was on his way to rehab this afternoon and that was necessary. Obviously this is a set back and rehab has been delayed. He is on an anti seizure medication (Delantin) and sedated (w/ adavan). Preliminary EEG results look okay--we are waiting for someone to read the results. They did a chest x ray and will do a CT in a bit. They say it is not uncommon for stroke patients to have seizures. He was on Delantin before but they took him off of it. Praying this is just a small set back!

**UPDATE--as of 5:00 things look good. The EEG showed no further seizure activity, the CT showed no changes and the chest x ray was good as well. He's out of it still but very active.

***8/19/09 Update- I just called up the hospital (w/ a pit in my stomach, I haven't done that since his ICU days and it all comes flooding back to you) and he had a good, restful night. No more seizures and he's a little more awake this morning. I won't get a chance to see him until tonight so I will update then.

More good news!

Today my Dad was accepted for rehab at Fanny Allen! We couldn't be more thrilled. This is the place that is 5 minutes from my house and about 20 minutes from my Mom and sister. They hope to have him there by weeks end. Things went so wrong for so long that this string of "good" feels extra wonderful!!!

I asked my Dad if he still believes God is good. He said "YES!".

I just know bigger and better things are to come from him.......stay tuned.

Time to get ANGRY!

I spent some time w/ Dad yesterday. Whenever I put a magazine or anything else w/ text in front of his face it seems as though he's reading it. I know he needs reading glasses normally and who knows how his vision is now. So I wrote his name, large, on a piece of paper and held it up to him and asked him what it said. He said "Kraig". Then I made a happy face and a sad face and asked him to point to how he was feeling. He pointed to the sad face, of course. Then I gave him the pen, which he held as he should, and he put a circle w/ a line through it on the happy face. While that broke my heart, I was elated to know that he's reading and comprehending, which is amazing!!!! Father, from my Dad's Church visited and when we all said the "Our Father" he joined in with us and blessed himself at the end of it. I can't tell you how happy I was to see that his faith is STILL strong and that he's still praying. That said, he's so ANGRY now. Which we've expected and been waiting for and quite honestly, I am relieved to see some anger from him. I keep reassuring him that it's okay, it's part of the process, that we understand, that we aren't taking it personally and that we won't go away, no.matter.what! I can't pretend, for one second, that I know what it feels like to be him right now. I imagine he's thinking, at this point, that the alternative may have been better. I know in time he'll feel differently. I can't wait for him to get to rehab and to be able to get outside and feel the sunshine on his face, smell the fresh air, see the blue sky, the trees, hear the birds.......something other than those hospital walls and ceiling. This will give him more reason to fight and work hard.

Continue to pray for his respiratory health and that they get him over to rehab this week. He needs that so badly right now. Please pray that he will be strengthened to endure and not give up.

In reading to my Dad I came across the following---which I found meaningful.

Psalm 116:8-9

"For you, O LORD, have delivered my soul from death,
my eyes from tears,
my feet from stumbling,

that I may walk before the LORD
in the land of the living."

Psalm 118:17

"He will not die, but live and declare the works of the Lord."

Someone found their voice!!

Two posts in one day, I know!! But I couldn't go to bed w/out sharing the good news w/ everyone. Yesterday my Dad got a new trach---one that would allow for a speaking valve to be put on it---today they put it on. Tonight when I walked into his room I read a sign above his head to him.....I said "Dad, the sign says "speaking valve on trach, leave on as tolerated". Is it bothering you or is it okay?"......he said something so I leaned down near the valve and asked him to repeat what he said and he said "it's being tolerated"! Just like that. Faint and raspy but there was no question what he said. I put my hands on my hips and said to him "it's being tolerated!!!!!!" and smiled and shook my head---he could have just said "it's ok" but no---so Kraig. Later he said "I love you too" and "yes" (in response to my saying God is good) and even "goodnight" to my Aunt Stacy. Rick handed my Dad a baseball (a soft squueze ball) and my Dad threw it to Rick---several times. When my sister came to visit my Dad pulled her in for a hug!! The nurse cried. Heather cried. There were lots of moments between he and my mom today as well.......I will let her tell you about them in her comments :) What a difference a day makes.

Oh yeah---they brought in a therapy dog today to visit my Dad. They put the dog right on his bed--- apparently he loved that. Started scratching him behind the ears :)

Off to thank God and get some sleep. What a wonderfully, happy, emotional day for everyone.....especially my Dad. He is coming back to us and we can't stop smiling!

xo

August 15th

Just a quick update, as I run out the door, to let you know my dad continues to make progress. He follows more and more commands every day. I put a mouth swab in his hand the other day and he brought it to his mouth and tried to brush his teeth w/ it. So I got him a toothbrush and he brushed his teeth w/ it :) When I showed him a sign that my Aunt suggested we make for above his bed, stating which channels he likes to watch (ESPN and NESN) he gave me a BIG thumbs up! He's been receiving lots of physical and occupational therapy and they say he's doing well. Yesterday they used the board to stand him up and he's been getting chair time as well. He still is not moving that left side though. All in due time.

My Aunt sent a book for us to read. It's a story about a lady named Kate Adamson who suffered a stroke at the age of 33. She was completely paralyzed and spent 71 days in ICU. She doesn't have use of her left arm and walks w/ a limp but made a miraculous recovery. She had what they call "locked in syndrome". She was aware of everything being said and could feel everything being done to her but could not communicate at all. I haven't been able to put the book down. Guess what day she had her stroke? June 29th, same day as my dad (although not the same year). There are SO many similarities between what she suffered and what my Dad is suffering through. I can't help but feel that God led my Aunt to her website one night to find this book and share it w/ us. Thanks Stacy. This book has helped me understand what my father probably is feeling and going through and has given me SO.MUCH.HOPE! I can't wait to pass it on to my mother. xo

He's ready to go to rehab next week I believe. We can't wait for that to happen.

xo

August 11th

Dad is still moving in the right direction. He is VERY alert now and staying awake most of the day. Loves to watch ESPN. The Nuero team finally figured out that he won't "perform" when 6 of them come in but he will if one or two of them come in alone. That is so my Dad. He hates crowds. They make him nervous. Glad to see that part of his personality is still intact. Yesterday they got him out of bed and into a chair. I had left already but my mom said he really seemed to enjoy that. He didn't even mind his helmet. He will need to wear that when he is out of bed and/or doing physical therapy until they replace the bone flap that they removed to make room for his brain to swell. They will put that bone back eventually. It makes me sad that they will need to cut him again---especially now that the area is all healed and his hair is growing back. Seriously though, isn't modern medicine amazing? It blows me away the things these Doctors are capable of.

Just keep praying for his respiratory health. I know getting that trach out will be a HUGE step in his recovery process. In order for that trach to come out he needs those secretions to go away. In order for that to happen he needs to be doing deep breathing, moving around and coughing strong. All those things that we do, w/out giving it a second thought, to keep our lungs clear.

Yesterday his Doctor mentioned rehab again and said that if they can get his respiratory care in order he may go as soon as this week. We still aren't sure where he is going at this point but this will be so good for him. He needs to get busy. No more lying there watching t.v. This will occupy his mind and motivate him. He is very emotional right now, as you can imagine. I can see it's very easy for him to shut his eyes and "tune out".........BUT I think he will thrive at rehab. I am so excited to see continued progress.

As always, thanks for your continued thoughts & prayers!

xo

August 8th.........more good news!

This morning when I got to the hospital a lady on the Neuro team told me "I got your father to hold up two fingers for me this morning". What?! She told me he seems to "comply" when you actually do it while asking versus just asking. So I sat w/ him for awhile--- he ignored me and went to sleep.

As I got up to leave I tripped over my own feet, landed on my knees on the floor---making a TON of noise in the process (OUCH!). When I looked up he was wide awake looking at me like "what the heck??". After that he did all kinds of impressive things for me when I asked (and demonstrated).........like waving goodbye, holding 2 fingers up, high fiving me and sticking his tongue out. I smiled so hard and kept telling him he rocked, lol. When I finally got out the door, and it was hard today b/c he was making me so proud, I said goodbye and waved and he waved back :)

I've no idea how much he understands or what he's thinking but I am darn proud of him and I'd call this progress. I know he has so far to go but every step forward gets him closer to where he needs to be. And we'll , each and every one of us, be right there by his side to help him and cheer him on.

Thanks for sharing our happy news with us!

xo

August 6th-- The full update

The last week has been an emotional roller coaster . Last Friday when we asked the Nuerosurgeon for his opinion "no holds barred" he pretty much said that my dad was in a vegetative state, did nothing purposeful and that we should pick a time frame of 2 to 3 weeks and if he wasn't any better we would have some tough decisions to make. WOW! This coming from someone who admitted he spends less than 5 minutes a day w/ my dad.

Luck would have it that at the beginning of every month the Nuero team rotates. We now have 2 new fabulous Doctors working w/ my dad. They kind of went back to the drawing board w/ things. They ordered another EEG and an evoked potential (to test the pathways between the peripheral nerves through the spine and to the brain by stimulating nerves with small electrical pulse). The EEG showed further slight improvement on that left side and the evoked potential looked excellent--everything is getting through on that left side. They said he has lots of healthy tissue and there is reason to be hopeful. So now they are still trying to figure out WHY he isn't doing more. BUT today, finally, thank GOD, he followed some commands for the Doctor. You have no idea how good that was to hear. We've seen him do stuff but they haven't. Finally, they did.

That leads me to my other good news!! After my dad had his stroke, but before his stent, a caseworker (we'll call him Bill) came into his room to introduce himself and say "hopefully you won't need my services but anything can happen so you never know." That was the last we saw of him over the past 5 weeks, until Monday when we met w/ the social worker about nursing home placement and he sat in on the meeting. Well, it turns out, he's our angel for the week. After meeting w/ us he just felt like my dad really deserved a chance. He remembered meeting him and how young and healthy he was and after meeting w/ the new Nuero team he felt like he needed to help him out. With his help and the help of the Nuero team he has been approved for acute rehab. This means no nursing home!!! Can you see me smiling?? There are a few places they are looking into for us--Spaulding Rehabilitation in Boston, Sunyview Rehabilitation in NY and Fanny Allen Rehabilitation (which would be fabulous b/c it's 5 minutes from my house and 15 from my Mom). We'll take what we can get though.........all 3 are supposed to be fantastic.

This afternoon my Dad was bright eyed and watching t.v. Whenever I asked him to look at me he did. He turned his head and looked right at me.........I talked to him about rehab and then said to him "if you understood all that give me a thumbs up" and right away he gave me a (very shaky) thumbs up. I kissed him and told him he'd made his daughter VERY happy. At one point he was holding on to the tube that goes to his trach and I told him to let go of it and he kept shaking his head no. He is getting strong---I couldn't pry his fingers off of it. That said, when my mom came around and said "Kraig, let go of that and give me your hand" he did just that. Ain't that love?? Then the nurse came in and said "it's okay. I told him he could hold it". I smiled. He knew it was okay and was telling me so the only way he could. He was probably wishing he could have told me to buzz off. You can imagine my Mom is so thrilled. She awoke this morning and called me and said she wasn't going to cry this morning---that she was going to be positive. I guess that paid off. Oh, I can't forget the fact that he only needed suctioning once in 14 hours. He was needing it hourly.

I know there are still miles to travel but finally.........some good news.........after a long 5 weeks. The new Nuero team and "Bill" have been absolute Godsends. As have all of you who are thinking of us, praying, sending cards, keeping the faith, leaving comments. We love you all! I know my Dad would be blown away w/ the amount of support you all have been giving to us. I continue to pray, that one day soon, he will be able to read this himself.

August 6th

Finally a little bit of good news to report........they have accepted my dad for Acute Rehab.......that means no nursing home at this point! I gotta run right now. I will give a full update later.

Thanks for all your continued thoughts and prayers!

August 2

Can it really be August 2nd?
31 days since my Dad has enjoyed his life?
A walk on the causeway, a Red Sox game, Foodees Pizza, a coors light or a glass of merlot, a nap? The sunshine, Church, his bible, time spent w/ his wife, his grandkids, his children, his cats?
You see, if my dad had passed I feel like I could celebrate his life.
I would be heartbroken, yes.
But I could think of him and smile knowing he was in heaven, with his father, with God.
Happy and whole again.
Instead I have to think of him (and trust me when I say that not a minute goes by, on any given day, especially the sunny beautiful ones, where I don't think of him) lying in that hospital bed, broken and living in his own private hell.
Wondering just how much he is aware of, what he's feeling, thinking, hearing, seeing.
Wondering if there is something he is trying to tell us.
I am so ANGRY!!
I am so sick of hearing "everything happens for a reason" or "God has a plan". I am ashamed to admit that my faith is shaking.
I think his suffering is unfair, uncalled for, unnecessary. Mean.
I wish I could make him better. That there was something more I could do.
I'll just keep putting my face and voice in front of him to let him know I'm there for him.
Please don't take this as me giving up on him, b/c I'm not. I'm just feeling for him.

**Sorry I haven't been updating as regularly, it's just that there isn't much to report. Progress is slow. They were trying to rush him out of the hospital and to a nursing home on Monday but we bought a few days time. They say they aren't doing anything for him that a skilled nursing facility can't do. He's still needing frequent suctioning.

Thank you all for your continued thoughts and prayers. It really means a lot to all of us.

Dreaming

I had a dream this morning
It was about my Dad
In the dream he was whole again
Healthy, smiling, laughing, walking
Talking about his journey
How he could hear all of us
Talking to him, praying w/ him
How thankful he was that we never gave up

I awoke from the dream with a kiss goodbye from my husband who was leaving for work. I told him about it immediately, he said "that's a really nice dream" and hugged me. Rick has always had a lot of respect for my father....for how hard he works and the person he is. I'm so thankful for Rick's support through all of this. He really has been a rock for all of us. He is visiting my Dad as I type.
Rick and my Dad on our wedding day. I can't believe it's been 11 years!

July 29

Sorry I haven't update in a few days. We have finally had a bit of summer and the kids are demanding pool, beach and boat time. I've still been up to the hospital every day to visit w/ my father. Haven't missed a day yet.

Monday they moved him to a private room which is nice for us, definitely more privacy but we're a little nervous that he isn't hooked up to any monitors anymore and doesn't have someone sitting in the room w/ him anymore, as he's still needing frequent suctioning. He still has a lot of junk in his lungs. Praying real hard for those to clear up so he can have that trach removed.

I think he's doing well! At this point he is fever and infection free. He really looks like himself again and he is finally getting some quality rest. Yesterday he was awake most of the day. The Doctors are saying that he still isn't doing anything purposeful and mention the phrase "vegetative state" more frequently than we care to hear. He may not do purposeful things for them but he really does for us. I'm keeping an open mind that things could go either way but I'm not ready to give up on him yet. It's still too soon. After all, it's only been 15 days since he came out of his "coma" and opened his eyes. Yesterday they did another EEG but we are awaiting the results. I am about to head up so I will update later.

Peace.Love.Pray!

My dad and his boy "Milo". Milo really misses his Daddy too. Milo and his sister Mitzi got up every morning, bright and early w/ my Dad and he fed them and played w/ them.

Held

I heard this yesterday and think it's such a beautiful song. The chorus moved me......I can't stop listening to it.

This is what it means to be held
How it feels, when the sacred is torn from life
And you survive
This is what it is to be loved and to know
That the promise was when everything fell
We'd be held

Third times a charm?

So yesterday they moved my dad out of ICU and back to the same bed on the 6th floor. Let's try this again? He's still receiving the heprin and the latest MRI shows no change either way within his brain. Outwardly, you can see the swelling is starting to go down. The area with the bone flap is starting to sink in---which is a good thing.

Still hanging w/ him, talking to him, reading the paper and the bible. It's all I can do at this point---and pray. I hope we see some changes soon.

The social worker is bugging us about nursing homes for sub acute rehab. We feel like they are trying to rush him out of there. I let them all have it yesterday and told them he would NOT be going anywhere until he was truly ready. This hospital is driving me crazy.


















l to r: Kraig, Jill, Me, Carter, Delaney, Rick, Sherry, Deven
*click to view larger

This one made me smile!

He does love his Red Sox shirts.


Click on photo to view it larger.

July 21st

Yesterday the plan was to give Dad a spinal tap and take about 10% of his spinal fluid in hopes of temporarily reducing the size of the fluid filled ventricles in his brain in hopes of seeing him come around a bit more and also to look for infection. The first attempt at the spinal tap was done in his room. They tried 3 times w/out success. He has had back problems most of his adult life and apparently has some arthritis there as well as a degenerative disc problem. SO they ended up having radiology do the spinal tap w/ guidance. They were successful. We don't know if there is any infection yet and, unfortunately, we did not see any change in his neurological status either. They say he does not do any "purposeful" things or follow commands. I have some him do some of each but not consistently. I do feel like he has his moments when he is "there" and in those moments all I see on his face are sadness and fear.

This morning they decided to start him on a heparin drip. They feel the risk of the clots are greater at this point than the risk of a bleed (which they don't anticipate happening). They are checking his blood every few hours to make sure things are okay. I believe they will do another CT tomorrow to check for any changes in his brain and lungs.

They are really stumped as to why he is not neurologically doing more and why he's not following commands. According to his CT he should be showing improvement. At the very least they feel like he should be talking a bit, following commands consistently and moving that right side a lot more. A secondary infection or something would cause delay but so far they have not found one. Perhaps he just needs more time? I don't know. Only time will tell. I hate to feel the way I do, frustrated, hopeless, angry.......but I'm only human. I think we all are starting to feel this way. It is so hard, day after day after day, to see him lying there, terrified and trapped in his body.

My faith is being tested for sure........I'm digging deep!

The Dash

A dear friend of mine sent this link to me a few weeks back. I'm sure she wouldn't mind me sharing her words w/ you---

There is a poem/movie on-line called "The Dash" (click for link). It was sent to me when my brother passed and helped to remind me how life should be lived. From all that I read in this blog and from talking to you, it sounds like your dad already lives life to the fullest, as this poem reminds us to do. For all of you who haven't read/seen The Dash, I'd take the time to do so. Turn up the volume...beautiful music accompanies each verse as well as gorgeous photos of nature. Your dad is going to pull through this, Lisa, and continue to live life as this poem intends.

I watched this and was moved by it. It really does remind us what is important in life and how you just never know what's going to happen in life. I have gone back to it a few times to watch it again. My friend was right about my Dad already living life to the fullest and I know he is proud of his dash thus far. I know every daughter will say their father is a good man but I really truly mean it when I say my father is a good man. Anybody who knows my father will tell you that. He doesn't care about the materialistic things in life. He never asks for anything from anyone. He has done so many GOOD KIND UNSELFISH things in his life. He doesn't deserve this. I hope he's not suffering.

My Dad and Carter

On Thanksgiving.........
Carter really can play Chess. He's pretty good at it! He had to remind Poppy of some of the "rules", lol.


click on photo to view larger!

July 20th

I was too tired to update last night.......12 hours at the hospital takes everything out of you.

My dad had a major set back yesterday. I had told my mom to take the morning off so I arrived to find him having trouble breathing. The respiratory therapists were w/ him. His heart rate was 92 and his respiration, which had been 30, was at 45. I held his hand for 40 minutes while they worked on him. I have never, in my whole life, been so afraid.

When they stabilized him they took him down for a CT of his head and lungs. The Neurosurgeon resident that we've been dealing with, who I don't care for at all, said he'd be come back w/ the results right away. After an hour and 1/2 a medical student, who's been wonderful to us through all of this, said he'd go find him. So, said Neurosurgeon comes back w/ a mouth full of food apologizing for the delay and saying that his blood sugar was low and he had to eat something (OMG) and then w/ a mouth full of food says "anyway, Kraig has had a pulmonary embolism!". Turns out he had a blood clot in each lung and the ultrasound showed a DVT (deep vein thrombosis--blood clot) in his left leg that was on the move. They made the decision to put a filter in his Vena Cava to stop the other clot from moving. Normally they would give heprin in this situation but b/c of the brain bleed, they can't. The Dr. yesterday said this could cause his death (the PE). It's serious but we're praying!!!!!!!

On a positive note---the CT we saw yesterday showed that the bleed is considerably smaller and that the left side of the brain looks unaffected. The neurosurgeon felt hopeful b/c he said this is the side of the brain that does all the cognitive thinking, speech, etc. BUT his ventricles are swollen and he has a little hydrocephalus. If he requires more drainage they will need to drain from his spine as they took the drain out of his head a few days ago (too prematurely if you ask me and I questioned it when they did it). He feels like his progess has been slow b/c of all these secondary infections/problems. If my dad can get over this latest hurdle.......I think he'll start to see progess.

I just checked in w/ the hospital to see how his night was. She said it was good. There is no evidence of the clots moving. We just need to wait and pray and hope the clots are absorbed.

PRAY!

My Dad the chef.........

Ask anybody who's tried it,
my Dad makes,
hands down,
the BEST pizza EVER!
It's been a while since I've had it.
We used to tell him that he needed to open a pizza joint and name it "Poppy's Pizza".
Apparently he made it like a week before his stroke.
I didn't get to have any.
I hope I get to have some again.

And cinnamon rolls.........
oooey, gooey perfection.
I used to love to watch him make them.
He'd flour up the counter and spread the dough,
butter it up, roll it, stretch it, sprinkle it.......
I can smell them now.
Brings me back to a late Sunday afternoon winter as a kid.

He used to make us breakfast for dinner.
We always loved that.
He'd make fried dough sometimes.
Other times he would wrap those little smokies in dough......
we'd have them w/ maple syrup.

And spaghetti w/ pepperoni in the sauce.......
and eggs benedict........
homemade french fries
and homemade fudge on Christmas Eve..........
slightly burnt toll house cookies (every time)
and there was lots and lots of Jiffy Pop on the stove top too.

My sister sent this to me today......her and Dad!

July 19th

Yesterday they moved my father out of ICU and guess where they put him? Right back where he started from, before all this nonsense happened, on the 6th floor, in the same room, in the same bed. Perhaps this a good sign and a 2nd chance at things. Now his physical therapy can start and he can begin his long road to recovery. It will be nice to not have him behind locked doors and that means no more picking up the phone to get permission to come in.

As I mentioned in my last post, things are moving slowly. My Dad definitely has those moments when he is "there". In those moments it's so wonderful and heartbreaking to see him. I just sit there and think does he know what's going on? Is he afraid? Is he in pain? Does he know us? And then I think if he does know what's going on---that this is his worst nightmare come true (as I mentioned earlier, his grandfather had a stroke at 62 and was paralyzed), even if just temporarily. His lungs are so full of junk and it's so painful to sit there and watch him cough, or worse yet, be suctioned. I have been praying for clear lungs so they can take that trach out.

A great friend of mine said it best in a comment--that this is the kind of test that none of us ever want to face but eventually all of us will and that faith of all kinds is what will get us through these tough times. He is so right. I continue to ask God for strength for all of us. I know that NOW is when the really tough part starts and when Dad is going to need us the most. I intend to be right there by his side. Whatever he needs...........

July 17th

I may not post as frequently now as there is not much new to report. We are told progress will be slow and we really won't know the extent of damage until he fully wakes up. We are trying so hard not to lose faith and praying for strength. It's so hard for all of us to see him the way he is right now. He does some purposeful things but it's not consistent or constant. Time.......he needs lots of time. Continue to pray and I will continue to keep you updated when something new happens.

Never Alone

I heard this song on the way home from the hospital the other night. It made me smile, it made me cry. I thought of my mom, my dad, my sister, brother, my husband, my kids.........and the rest of my family. I just wanted to tell you guys that you're never alone. No matter what happens--I'm always here for you and I love you. Life can change in the blink of an eye.

Today is my sons 8th birthday! It's bittersweet. We are big on birthdays around here and always get together to celebrate each and every persons. My father will be missed today. He sings happy birthday really "silly" and makes Carter laugh. He would love the chocolate cake w/ chocolate frosting that I made.

Happy birthday to my big little man. He so reminds me of my dad in so many ways. I've always said that (my mother in-law has always said so too)! From the way he bites his lip w/ his upper teeth to his engineer wired brain!

July 15th

Today I woke up to the sun shining and a smile on my face. I thought, once again, of my Dad saying "look at this beautiful day that God has given us". My mom came over and we went up to the hospital together.

We arrived to find my Dad sleeping but he soon woke up and opened those beautiful blue eyes for us. When I say opened his eyes--think newborn baby. They are only 1/2 open and not for long periods of time. You can tell the light bothers him and he is not moving his eyeballs around. Just opening them and blinking. I do believe he sees us and recognizes us though (probably through a vaseline induced haze)---we'll say, for example, "dad you know mom is here right? blink your eyes if you do...." and he does and he'll hold his hand out for her. Today he kept bringing his hand to his head and using his fingers to "trace" the staples. It's a big cut and he knows it's there. I can only imagine what it feels like to him. He seemed confused and definitely afraid. so I spent a lot of time giving him an abbreviated version of what happened and reassuring him that he was okay and that there were things he couldn't do right now that were to be expected for where he is in his recovery. We talked to him, I read to him and eventually he dozed off. It's so hard to leave him when he keeps holding his hand out to you.

This morning they clamped the drain in his brain........he did great all day w/ it clamped. In the past when they did this his blood pressure would go really high but today it remained low. Tonight they completely removed the drain! The more things they get out of him the better, they said.

He's moving his right side so well. You can see him testing things out. My Dad is an engineer and you can just see his mind at work. Move the foot at the ankle, wiggle the toes, spread the toes, bend the knee, lift the leg......move on to the arm....so far the only thing he hasn't moved is his left arm (although I've seen his left shoulder move and he is trying to move that arm---I say he does it eventually). YES--- he moved his left leg today all on his own.

Another day of progress. We'll take it. I'll say it again, God is good and he hears every single one of your prayers!! My entire family thanks you for all your love, prayers, thoughts and comments.

July 14th

Today started out as a bad day for all us. Just feeling lost and sad. Trying to hang on to that last bit of hope. My mom was with my dad all day today and he was pretty mellow, no movement or anything, just deep sleep. Deep sleep and a fever. They drew blood, did a chest x ray and an urinalysis. Pneumonia? Kidney infection? Staff infection? Nothing? Only time will tell.

I didn't get to go to the hospital earlier today b/c I didn't have anyone to stay w/ the kids. So I went up later in the evening. I got there around 6:15 and was discouraged. I sat and cried. Pulled it together and read to him from his bible. Closed the bible and started talking to him---about everything, the kids, the weather, his brother who is coming to see him Friday from Texas and all of a sudden up goes his right arm and it's heading right towards his staples on his head. So I grab his hand and hold it. Then I look at his face and I can see blue from his left eye (he has the prettiest blue eyes). "Dad are you trying to open your eyes?" my heart was pounding. And sure enough, little by little he opened that eye about 1/2 way and his right eye a bit too. This went on for 20 minutes. He was trying to talk too but I told him "you can't talk right now so don't try". He was moving that right side all around. When I asked him to move his toes he would. I told him that he had vaseline on his eyes so if things were blurry that was why. He kept bringing that hand up to his head and it never dawned on me that he might be in pain. The nurse said "Kraig, blink your eyes if you are in pain" and blink he did. So she gave him something and out he went. God love him.

My mother and sister went up later and rounded the corner to see him lying there scratching his head w/ his eyes 1/2 open again. He appeared to know who they were and did much of the same things w/ them as he had w/ me earlier. When the nurse asked him if they were being loud he shook his head no. He keeps touching his head, he seems confused so my mom and the nurse were trying to give him an abbreviated version of what happened. Obviously he's still very out of it and still coming around.

There really are no words to express our happiness right now. We're taking it day by day and today, was a good day. Today, God sent us a reminder to not lose faith.

Praise God and you all you wonderful people who are praying for my Dad!

My Dad the Entertainer

Just felt like sharing this! when I think of my childhood---I always think of this.

my Dad played the guitar for us.
we would all pile onto my parents bed.
and jump around and be crazy.
he never told us to sit still.
he was good at it.
he enjoyed it.
we loved it.
he could sing too.
grandma's feather bed by john denver was one of our favorites.
anything by John Denver really.
bad bad leroy brown by jim croche was one of his.
when we "outgrew" his music choices
he tried to learn songs from "Grease" until his fingers were raw.
if that's not love---I don't know what is.

P.S.
there was also a song about chasing women.
we loved it.
we still know it by heart <3
i've never heard anyone but my dad sing it.
hearing the song now i realize
he sang it just perfectly.
http://www.youtube.com/watch?v=J6Uq5VHGuPA

July 13th

I made it to the hospital at 8:30 a.m. only to find out that the nuero team had been in at 6 a.m. Sigh. So I sat w/ my Dad for awhile, read to him and told him about the Red Sox Game last night and how the tooth fairy ALMOST forgot to leave money for my son (I saw his tooth "box" sitting on the counter as I walked out the door and ran upstairs to put the money under his pillow---if any of you still believe in the tooth fairy and I ruined it for you---I'm sorry) and other small talk. He was moving his right side quite a bit while I talked w/ him.

The Nuerosurgeon did make his way to the waiting room where he spoke w/ us (my mom, my sister and I). The results from the EEG and the other neurological tests done last Friday looked good. The side of the brain w/out the bleed responds as it should while, obviously, the side w/ the bleed is weaker. That could be due to the swelling. Only time will tell. The ICP variance is due to the drain. When they clamp it off his pressure goes up--so he is not ready for that to come out yet. He said he is still critical as long as he has that swelling and the drain. It could still go either way. He said his movements are spontaneous and he doesn't follow commands. However, he did follow commands later in the day. The nurse would say "Kraig, move your toes" and he would. He's been very active today. Still not awake........but I'd say this is more progress and another step forward.

God is good!

Today marks 2 weeks that my father has been away from us. To say we miss him is an understatement.

July 12th

Not much to report. My father had a quiet, uneventful day. His ICP was higher and he wasn't as active, although, he seems to be resting so peacefully and I even heard him snoring at some point. I'm telling myself he's tired out from yesterday and he needed the rest. Plus, it's Sunday--- a day of rest. 1 step forward and 2 steps back. I feel like tomorrow he will take a step forward again.

Tomorrow, we plan on being at the hospital, in his room, at 8:30 a.m. Neurosurgeons BEWARE! You'll not get by me w/out answering a laundry list of questions I have compiled for you. It's time for some answers.

More then.............

I Wish you Enough

I was just cleaning up my inbox and came across a bunch of e mails that my father had sent me. When I found this particular one, sent about a week before his stroke I sat and cried. I hope I can see his blue eyes again and laugh with him again. He has the best sense of humor.

It was about a father and daughter at an airport and when the daughter boarded the plane the father said "I wish you enough" and the daughter said "I wish you enough too Dad and I love you." A stranger asks the father what that means and he says "I am old and sick and this may be the last time we see each other. When we said, 'I wish you enough,' we were wanting the other person to have a life filled with just enough good things to sustain them."

He then recited the following:

I wish you enough sun to keep your attitude bright no matter how gray the day may appear.

I wish you enough rain to appreciate the sun even more.

I wish you enough happiness to keep your spirit alive and everlasting.

I wish you enough pain so that even the smallest of joys in life may appear bigger.

I wish you enough gain to satisfy your wanting.

I wish you enough loss to appreciate all that you possess.

I wish you enough hellos to get you through the final good-bye.

July 11

So I woke up this morning to a phone call from my sister. She was wondering if I had checked in w/ the hospital yet---something I do every morning to see how my fathers night was and then I report to her and my mom---it's hard for my mom to make that call. So I got up while the house was still quiet and came downstairs with my husband. He had opened the door to the side porch so we stepped outside. It was one of those perfect summer mornings, temperature was just right, nice breeze, birds chirping, sun (FINALLY) shining and it smelled so good out there. It was the kind of morning that made me wish I drank coffee and read the newspaper so I could sit out there and do just that. Then I thought of my dad and how he'd love to do that and then I thought of something my mom told me he said every morning to her---be it 20 below zero or raining.... "good morning--look at this beautiful day God has given us". I couldn't help but think it was going to be a good day!

The phone call to the hospital was good news. His nurse said he had a great night, he was moving his right arm a bit and that his ICP (brain pressure) was at 2. WHAT? Are you kidding me? Our visit today was good. Dare we say he's turned a small corner? We walked in to find him w/out a single tube on his face and looking much more relaxed and comfortable!!! He is still not awake but he is breathing completely on his own. Every once in a while he forgets (he has been on a ventilator for 9 days) and that's a bit scary but he gets it right back. He was lifting his right arm up and moving it, moving his big toe on his right foot, his shoulder and his head. Lots of swallowing, moving his mouth and steady breathing when I read to him from his bible again. His fever was down, his swelling near the bone flap was down, his blood pressure is still a bit high but much better than yesterday. No results from the neurological tests yet.

Let's hope and pray that this is the first of many good days on his road to recovery. We know it's going to be a really long road but we've all signed up for the ride.

Thanks again to all of you who are reading this and praying for him. Please, if you're reading, leave a comment. I know when my Dad is well he will love to read about his journey back to us and to see how many people were praying for him!

Also, thank you to all of you who are visiting us at the hospital. It means so much to the entire family. If you haven't stopped by but want to, please do. We'd love to see you. The waiting room gets lonely sometimes and the clock ticks slowly.

July 10

Today they put the trach and feeding tube in. Both procedures went well. My father seems much more comfortable w/out those tubes in his throat. We didn't get the full results from the EEG and the other tests BUT they did tell us that from the EEG they looked for seizure activity and found none--which is good. We are not anticipating any other results until Monday as it's the weekend-- but you never know. His blood pressure is still high and they seem to be having a hard time controlling it. He still has the fever too but his lungs still look good and so far the cultures don't show anything growing. No other changes. I will report again tomorrow. Today was a frustrating day. It's so hard to get answers from anybody at the hospital.

July 9th

Today was a long and stressful day. It started w/ a phone call to the ICU where they told me his blood pressure was still very high and had been throughout the night. The nurse said it would be a "busy" day. She told me he had been off the sedative Propofol for 24 hours and that may be the cause of the high blood pressure (I'm talking 180-185). They needed to keep him off sedation to do the EEG and the other tests. They only managed to get the EEG in today. Once they did that they put him back on the sedative a bit and when I left he was resting comfortably (or at least he appeared to be). His blood pressure was 135-150, his ICP (brain pressure was good) and he was calm.

They also managed to get a Cat Scan in today. The results of that were encouraging. The cortex looks good (this is the outer part of the brain that controls memory, attention, perceptual awareness, thought, language and consciousness). The bleed is already smaller in size and being reabsorbed by the brain. The ventricles have less fluid around them and have decreased in size. His overall ICP (brain pressure) is lower. Today he responded to pain everywhere except his left hand. That said, while this is encouraging, it doesn't necessarily mean anything. The results of the EEG will give them a better idea of what's going on, although, as I mentioned before, it's not 100%. Still watching his temperature and for a secondary infection. More tomorrow.

Thanks for all the continued thoughts and prayers, phone calls, text messages and Rhonda & Ali---thank you so much for dinner and dessert the last few nights. You have no idea how much that helps after a day at the hospital.

July 8th

He has been running a fever for a few days that tylenol controls but they don't know the source of the fever. They suspected pneumonia but yesterdays chest x ray came back clear. They did another one tonight. We will see the results of that tomorrow. They want all the tubes out of his nose and throat so they will do a temporary tracheotomy and put a feeding tube directly into his stomach. He is mostly breathing on his own but the vent is giving him a little "push".

Tomorrow they are going to do an EEG, some type of nerve stimilus test and a light test to help them determine what is going "upstairs". These tests aren't 100% but they hope they will give them some useful information.

Today, we personally felt like he was more "there" than previous days. His blood pressure went up while we were in the room talking to him, he moved his mouth a lot and had a few "coughing" episodes from the tubes. They say these things can just be reflexes but but today was the first time in 5 days we saw these things.

Tonight I can't sleep. His blood pressure was high when my mom & I left and his breathing was fast. They were drawing blood to make sure "nothing was growing" (ie; infection). Tonight, like every other night, I pray to God that he makes it! I pray for him, for all of us who are missing him and especially my mom.

My Father's Faith

About 7 years ago he felt something missing in his life. He found God. He initiated the RCIA process at the Catholic Church and made his confirmation at the Easter Vigil. His faith is strong. He teaches Religion and is very active in the Church. He is 100% sure of what's on the other side. His bible is in his hospital room with him, well loved, duct taped spine (my father loves duct tape and uses it on everything) hand written notes throughout and treasures and trinkets in between the pages. I have been reading his bible a loud to him when I get a chance b/c he likes to read it every morning (if you know of anything I should read to him, please leave a comment). We have been able to find some peace in his faith.

Catching up on the last few days.......

Obviously they have been extremely difficult and his condition is critical. They have no idea the extent of the injury to that area of the brain. They will only know when and if the swelling goes down. They have no idea how long that might take--- a week, 2 weeks a month? The neuro team turns his sedation off every morning to see what they get and it varies each day. They know his brain stem is functioning, they know he responds to pain, when his ICP (brain pressure) goes up they can bring it down by repositioning him which means he is feeling discomfort, he has a gag reflex, his pupils are the same size and respond to light, his breathing tubes adjetate the hell out of him----all positive things but they could mean nothing. His ICP fluctuates daily between 15 and 25. His blood pressure is relatively stable unless they move him a lot, bathe him, fuss w/his tubes......then he gets worked up. All the Cat Scans show nothing new since the initial bleed. That is also good news.

We are at the hospital constantly and visit him as much as we can. We talk to him, hold his hand, pray and gather strength from each other.

July 5th---Wedding Anniversary

July 5th was my parents wedding anniversary. Needless to say, it was an extra difficult day for my mother. He was supposed to have been released from the hospital on July 4th. I assured her they would have "their day" in the future.

July 4th--The Drain

On July 4th they called us at home and said they needed to put a drain and a monitor in his brain. It was a critical piece of his care that was missing. They had no idea what the ICP (pressure in the brain) was. Normally they would have put it in when they removed the piece of the skull but obviously they didn't b/c he was so critical. Today, he was only 2 days off the plavix (they like them to be off for 5 days before they do any surgery) so he ran a 20% risk of having a bleed on the "good" side of the brain. Yet, if they didn't put the drain in he ran the risk of the bleed getting larger and more damage being done. So we gave permission for the drain and the procedure went off without a hitch. They wanted to see his ICP below 20 and it was at 14 when they put it in. Earlier in the day when they brought his sedation down they did get some spontaneous movement from his right arm and leg and withdrawl from pain on the left side.

Emergency Surgery

So the Neurosurgeons took him away to remove part of his skull and told us it could take 2 to 4 hours depending on how things went. We held hands and prayed and cried and prayed some more. After 1 1/2 long hours they came back w/ a thumbs up that there had been no bleeding and things had gone well, that they would try to wake him in the morning and we would go from there. So we were hopeful---until we went in to see him and the nurse said worse case scenario he never wakes up and best case scenario he wakes up w/ some deficits, how big or small would have to wait and be seen. I can't even begin to tell you how terrified we were or how heart breaking it was to see him this way, breathing tubes, machines, cut, stapled, shaved (well not completely---but he had a mohawk he would not approve of).

The Bleed

While my Dad was still in the post op recovery room waiting for his room in ICU things took a turn for the worse. His blood pressure spiked and he was no longer responding. At this point they took him to CT to find he had a bleed in the area that was weakened by the stroke. They have no idea why the bleed happened but it did and it was sizeable and it was causing swelling. We were told that they would need to remove some of his skull to give the brain room to "swell". We were also told "if he bleeds when we do this, he dies". This was due to the fact that he had been on heparin for 3 days and plavix for 1.

July 2nd--Stent Surgery

On July 2nd at 1:30, my mother, my sister and I kissed him goodbye as they wheeled him away in his bed for this simple procedure and said we'd see him in a little bit. The Doctor said it would take 1 to 2 hours for the procedure. Turns out they didn't start until 3, finished at 4 and came out at 4:40 to let us know that everything had gone text book, better than they had hoped, he was awake, talking, responding and doing great. They were bringing him to ICU and if we went up we could see him there. Which we did, but after a while of waiting and being told his room wasn't ready yet my sister and I decided to head home to take care of our kids. My mom stayed, we planned on coming back later. At 6:00 I got an urgent call from my mom that I had to come back. Things had taken a drastic turn for the worse.

June 29th--- The Stroke

I started this blog for friends and family who want to follow my father's progress after his stroke on June 29th. My goal is to leave most of our emotions out of these updates and to not get too personal but to get to the point. I also thought when my father recovers----it will be a good journal for him to read.

So as I mentioned, my father had a stroke on June 29th. Thank God my mom was home and was quick to call 911. She saved his life. He was at the hospital within 1/2 hour of showing stroke symptoms. They were able to give him TPA (a clot busting drug) since it was within the 3 hour time frame. We watched in amazement as it worked it's magic right before our eyes (I wanted to add that his grandfather had this same stroke at 62 and his mother had the same stroke, although later in life). He spent the next few days in a room a step down from ICU. They found out that his carotid artery on the right side was open less than 1mm. They put him on heparin. My Dad's options were surgery to clean it out or a stent. He chose a stent. They decided to wait a few days to give him some time to recover a bit before the procedure. He was fine. The day he went in for surgery he was listed on his charts as "independent". Walking around, eating, writing, reading, talking, laughing, etc......no symptoms from the stroke other than some weakness.