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Looking back....stroke to today....12-13-08 to 6-14-10


ruthpill

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William stroked on 12-13-08. This will be a date that is etched on my brain. it is like my birthday.

 

He was reading Ezekial preparing for Sunday school. He was reading out loud. He stopped reading. I looked over and he appeared to have nodded off. This is odd. I went over and checked...his breathing is labored. I asked him to standup. I told him that we need to go to the hospital now. He said" give me a minute". He couldn't do it. I called 911 and said "I think that my husband just had a stroke". It felt like an eternity for the ambulance to get to the house and for us to get to the hospital.

 

I am on the phone with my son (a resident MD in NYC). He is advising me to get TPA if William is eligible (ischemic stroke vs hemorahgic). He is calling one of his friends who advises on the merci retrival. We get to the hospital and I realize that this is not where I want to be. But, he has arrived and they will not transfer him now.

 

Later, while the TPA is dripping, he is transferred downtown to the medical center.

 

It is planned that he will be put on a regular floor. By the time we reach the floor of the hospital...the EMT notices that William is not stable. He is rushed to NICU (neuro ICU). He stays in ICU for 3 days or so. That part is a blur.

 

We get to a regular floor and are told that the 1st days are critical. He is monitored closely. I am told that he needs to have a sitter with him at all time. They hire a CNA to be with him while I am at work. They have put in an IV and nose tube for feedings. William inadvertantly pulls the nose tube out and has his hands tied down to the bed. They do not want that tube to be touched. I release the bonds while i am in the room with him. The nurses do not like that. I also have the nurses turn him every 2 hours. This is a chore. While I am there, I help. because it takes two people to turn him. William at this point doesn't open his eyes and move at all. The doctors come in and want to check his eyes. They have to hold his eyelids open. He cannot do much of anything.

 

PT comes and wants to get him up. Well, he can hardly move. They bring in what is called the cadillac chair. they put him in this contraption and tie him in. He cannot hold up is head. it is as if the muscle in his neck do not function. His chin is on his chest. I hold his head up. He still does not like to keep his eyes open.

 

We get moved to a different building. He stays here for awhile. We are told that he is not strong enough to go the rehab unit. William has been diagnosed with congestive heart failure and an arrythmia. His ejection fraction is very small. It has since improved with medication. We are transferred to SNF (Skilled nursing) for 2 weeks. Finally SNF kicks us out and we are allowed to temorarily try the rehab floor . This is on a conditional basis. Let's see if william is strong enough to endure therapy. PT on the SNF is once a day. They come in and teach him seated balance. This is just sitting on the edge of the bed. Can you imagine? This is difficult. It takes a couple of therapists (Andrew and Warren) to hold him upright at the edge of the bed. William can still remember seated balance (what a term). Still no food, on the nose feeding. The tube is accidently pulled out again. This time I plead that they keep it out. William gets to start eating pureed food and thick liquids. We move from super thick to moderately thick to chopped. We don't get to regular food until we have been home. He passes the swallow test

a month so after he gets home. I get rid of the thickener...I hate it as much as William. Thick water did not taste good.

 

 

Hard and difficult and scary...but worth it. No more nurses and doctors barging in all of the time. No more mashed potatoes and gravy. The chopped diet was getting boring.

 

I start with home therapy. That lasts 1 week. I change to regular outpatient therapy. I feel that he needs more help and I can get him to an outpatient facility. Unfortunately, I choose one that does not specialize in strokes. They don't tell me this until I change because of the poor therapy that he is receiving. They do not realize that a brain injury is treated differently from a broken leg.

 

We get home in February. I finally find a good stroke rehad place.

In May, I start his water therapy. I am the water instructor for William. At the beginning he can only stand at the edge of the pool. We have a chair lift that drops him into the water and gets him out.

He is afraid of the water.

We try accupuncture for 3-4 months. This does not help. William hates needles.

The only outings that we have are to the doctor, Therapy and church. Church has been our regular weekly outing from the beginning.

 

We use OT and PT until the year is used up. I find a clinical study (lokomat). This a robotic treadmill. this is an amazing study. It gets William into wanting to walk. Perhaps he is finally strong enough to really participate in rehab.

 

I get William fitted for a custom wheelchair. It is still being authorized. But, unfortunately, my insurance has changed.

 

William after 13 months of water therapy with me...is able to put his head under water and is able to actually try to swim.

 

We go on bus trips (day trips) with the YMCA. William has the stamina to go for an 8 hour outing.

 

We no longer use the wheelchair in the house. William is able to walk with assistance. I move his left leg and give him a little support. I switch and he use the hemi-walker, quad cane, walking stick, single point cane. William never knows what is going be passed to him.

 

William is able to use the urinal , while he is in bed. This means that I do not have to get up 3 times a night.

 

Things are looking up. William is able to follow TV programs. He loves the civil war. I can put on a civil war program and William is engrossed for hours. He has no problem with concentration or understanding. We had problems with TV at the beginning. William was just confused. HE could not watch TV for any period of time. He could not read and concentrate. Today, he is able to read and concentrate. Yes, he is improving. But, it has been along journey.

My goal is to get him to walk without assistance. I am getting there in the water. I just hold his hand. He does not use a belt. At the beginning, I supported him, totally in the water. Yes in looking back we have come along way.

The change is so insidious. I spend so much time with William that I don't notice changes. This black and white chronology is good for me.

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Ruth, I enjoyed reading William's journey. I can relate to some of it. He is so fortunate to have you in his life.

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Ruth:

 

Willian's journey reminded me of my initial journey. During those time having loving spouse who will be in control & incharge of things when I was totaly out of it. William is fortunate

to have you in his side.

 

Asha

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Ruth: thank you for William's story. Often times I refer back to your info since Bruce is just 3 months after William and I have a gauge, which is most helpful. You and William are an inspiration and I thank you for all the support and sharing. Debbie

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Hey William & Ruth,

 

Man, you are the greatest in my book. So glad I got to meet you, member meeting member, I'll be contacting you all soon again!

 

Let me add this tidbit about walking and making the weak leg much stronger. I'm in PT and my therapist tells me I'll be walking without my cane by the end of July!

 

Now that William is walking, driving his truck is just around the corner soon!

Okay, go from sitting to standing, putting more pressure on the weak leg muscles. Then when he sit down, it is slowly, not a plop down, squeeze the butt muscles getting up and sitting down several times, like 10, then rest.

 

Now, Walk with the cane, but make wide steps with both feet while you assist so he don't fall. You will see improvement in one week.

 

I'll be down there to help and show you with exercises they gave me on sheets of paper. It works for sure, he is a candidate now with how he has improved.

 

I'm proud of him and you assisting him like my wife does me. Call me if you need more info, OK?

 

Congratulations!!!!progress is great!

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