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.