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.