October 31, 2012

Welcome change

After several days of Erik being withdrawn, struggling with pain or fatigue, today was a welcome change.

When I went to see him at lunch he was eating well and seemed comfortable.

When I sat with him in the hallway afterward he was calm, alert, looked at me and smiled a bit.  This was precious.  You miss eye contact when it's rare.

His leg didn't seem to be bothering him as much and he wasn't as tired.  In fact, he was awake most of the morning, I was told, and was still awake when I left.

He pointed to various people as they walked by.
He noticed some balloons down the hall and pointed to them.
Erik said "Hi!" to a nurse at the nurses's station.  I'm jealous.

But the BEST thing that happened was...we were sitting in the hall visiting with some ladies and FOUR therapy dogs dressed in little costumes came to see us.
A little smile from Erik.  This collie was all dressed up as a fairy.
So sweet.
This one kept kissing Erik's hand.
I loved watching Erik tilt his head to look at this face as he stroked her.
What a blessing they were!

Erik's glasses were dirty so I went to clean them and came back drying them with a towel our sister gave him.  It's embroidered with a football and his name.  He seemed to like holding it and showing it to people.  I'm grateful that he seemed a little more like himself today and was more aware of the world around him.  Rejoicing.  :)

October 19, 2012

MORE Pajama Drama?

One of the nurse aides in Erik's wing is B.  She's a joyful, fun person.   She saw me this morning as I was heading to his room.  She smiled and told me that Erik has been "pushing her buttons."  She will get him ready for bed, dressing him in the hospital gown they regularly use and wouldn't you know, Erik really doesn't seem to appreciate this bedtime attire.   B walks by his room and sees him sitting up, signaling with his index finger "come here!" She'll go in, find that he's taken off his hospital gown and rolled it up into a ball.  She puts it back on him, talking to him nicely about how he needs to leave it on.  But I ask you, does he?

I have Erik's old, threadbare blue pj's folded in my laundry room right now.  Sometimes I see them and remember what a power struggle we had with them.  And I think, "Well, I guess he's forgotten all about these pj's."   Well, now I wonder.   

Did I ever tell you what Erik would do with pj's when he was little?  He loved his pj's so much he would roll them up and stuff them under his pillow when he got dressed in the morning.  Then at night, he'd get them out and wear them to bed.  My mom never caught on that they weren't showing up in the wash.   Until one day a horrible smell permeated his room and they were discovered under the pillow.   Erik was upset to see them promptly going in the wash because they had become so soft and he liked them just as they were.

You may remember how particular Erik is about pajamas.  (If not, visit this post or this one

Another nurse told me today how she found Erik sitting up Indian style in his bed.  He's not tried to get out of bed by himself, thank goodness - I don't think he'd make it on his own.  When he's awake and alone in his room he clearly makes his presence known.   Sometimes he lets out a strange wail or yell "Hey!" as someone walks by.  The other women in the hall tell me they've gotten used to it and it doesn't bother them.  I sure hope it doesn't.   Another nurse aide walked by Erik today as we were sitting in the hall.  She leaned down close to him, curled her finger around his finger, kissed his head and sang, "Erik, my Erik, my Erik and me!"  She said that's their little song. I love that. I love it that Erik is receiving such sweet care in spite of his little protests.

October 14, 2012

My Rock

I think Erik's feeling a bit better lately.  A week ago I wouldn't have said that.  The leg with the blood clot was swelling up bigger every day.   I didn't like it and I'm sure he didn't either!  I went to feed him lunch last Tuesday.  He was very agitated, upset and NOT hungry.  And so unlike Erik, he screamed at me at the top of his lungs over and over as I tried to feed him.  It made me cry.  Just felt helpless and confused.   But his nurse came in and I was able to urge her to look into the swollen leg issue.   She did and that's why I think he's better. Two days later I went to feed him lunch again. I didn't try to engage him in conversation, I just sat and helped him eat.  It went better, maybe because his food is being mechanically ground now so it's easier to swallow, I really don't know.  Here he is that day before lunch arrived.

He even smiled and laughed later on.  Wow.  My husband and I saw him on Friday; he was alert, seemed more at ease and engaging more with the people around him.

I just never know what each day will bring; I tease Erik all the time -- that he's just a mystery and that life with him is a roller coaster.  This afternoon he was snoozing away in his bed, looking so restful.   

The past 6 weeks have been some of the hardest we've had.  But I'm grateful for the things I've learned and that Erik is ok and that our mom will arrive tomorrow to see him.

Not long ago I was worrying constantly about sweet E.  I knew I needed to trust the Lord and I'd try -- but find myself worrying again.   Then I think the Lord gave me an idea.  I needed to latch onto a character quality of God for the week.   Whenever I'd get overwhelmed or worried, I'd remind myself of that truth about God.  The first week I picked His Power.  Last week it was His compassion.  This week it's His faithfulness.   This has been a Great Rock for me to stand on.   Also one day I read a devotional and it spoke to me so much about God's ever-present care that I wrote it down, taped it up, took a pic for my phone so I could see it all over the place.  Now you can see it too.

October 7, 2012

Accept today

Before now I hadn't spent lots of time in the company of those who were feeble or real advanced in age.  Erik is only one year older than me but that's how I'd categorize him today.  Before his 3 seizures he wasn't bounding with energy; but he did swim in our pool only last July.  And we'd often throw the football back and forth in his room.  We teased each other and laugh a lot and sing.  That now seem so unattainable.  I'm missing those times. 

Erik today is very centered on sitting in his chair, holding his Cowboy hat (or football) in his hand, napping, taking his meds, trying to eat and sort of stroking his left leg which, I believe, bothers him often.  He's not in rehab anymore, but moved to the 24 hr nursing care wing.  When I'm there, I'm not sure he's able to connect me with any memories.  But I want to see him anyway, hold his hand, help him in any way I can.  It's hard to know what to do to brighten his day.  I've been playing some of his favorite songs on my phone but now even that doesn't seem to register with him.   I'm learning to accept whatever today gives and that's ok, but not always easy.

This stage of his life is not headed towards recovery.  But Erik continues to amaze me.  The Lord uses him to teach me about compassion and simplicity.  Those who work with him in Long Term Nursing Care every day humble me and fill me with gratitude.  Erik has been loved everywhere he's lived and that's still the case now.  I think certain nurses and helpers get special smiles from him.

Erik really likes this football
I caught him napping this past week with his soft Cowboy blanket.  He was sleeping so well.
If you think of it, please pray for Erik's leg, that the blood clot would be resolved, he'd not be in pain and for him to eat better.   Thank you.

To end on a happier note, let me share pictures of this dude, living life to the full.

Erik dressed as Elvis for a talent show.  I think he sang Blue Suede Shoes. He won first place!  How could he not?
another talent show, Erik giving it his all.
Colorado fishing and Erik hooked a good one.
 Love, Liz

October 1, 2012

What's going on in rehab?

Happy October, everyone.
Erik's days have been filled with therapists, nurses, visits from family, eating and sleeping.  Sometimes it seems like he does more sleeping than anything else.  One day his weight was needed for some new medicines so he was weighed on a sling scale.  (He's pretty wobbly to stand.)   The machine hoisted him up over his bed and slung him like a big fish.

He's been so tired.  Often I'll find him slumped over in his chair after a meal or during a meal, sound asleep.

One day last week his therapist was getting him ready to go for a walk.  In the hall outside his room, she strapped a belt around his waist to grab onto in case he fell.

She asked me to try and get him to stand up.

I didn't have any luck.  But his therapist did.

Time to rest after all that walking.  Erik's having no problem with this part of rehab.

Last Friday I was hanging out with Erik in the hall near the nurses station and a woman came over and said, "We need Erik for a glamour shot!"   

Here's how he looked. He smiled at her as she took the picture.  So cute.  It was good to see him starting to sit more upright.   Before he was slumping over a lot.  I think he's not in pain as much now, which helps everything.

After the photo shoot, it was time for a walk.  Erik did well.  
I was told today that this morning he walked around the building using a walker for the first time.  They said he strolled around with a huge grin on his face the whole time.  love that.
Quick update:  His picc line has been taken out after 2 weeks of receiving those strong antibiotics.  He is being treated for a blood clot in his leg.  He has developed an upper respiratory infection and is having breathing treatments for that.   Seizures appear to be under control.  He's still not eating well and will not feed himself an entire meal, maybe only a few bites.  His weight is being monitored closely.  Our sister came last week and helped out, which was so wonderful.  All in all, he seems to be stabilizing in some areas, which gives us relief.   This week he will be moved to a semi-private room so he'll get a roommate.   I so appreciate your prayers for Erik and for me, that he would adjust well to all the changes he's experiencing.  And that I would have wisdom in balancing my care for him and in all decisions.

All for now, love from Erik and me.