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