Four Weeks too long!

   Today marked Todd being in the hospital for four weeks.  If you would have told me four weeks ago, he'd still be there, I'd tell you were crazy.  The worst part is, he's worse off now than he was four weeks ago.  

   Since the seizures on the 1st of Sept, he really isn't talking any more, except a few words here and there.  He doesn't sing with us anymore either. He's stooped over and doesn't stand up straight.  He's eyes are cloudy and empty (I'm sure from all the drugs they give him).  He's still not sleeping. Only about an hour or two a night even with all these drugs they give him to try to make him sleep.  They again have changed what they're giving him.  Nothing has worked so far.  He just remains busy all the time, pacing up and down the hall ways, getting into other people's rooms, just being busy, busy, busy.   The last two days during visiting hours, he's paid little attention that Kristi and I were there.  He'd maybe sit with us for a few minutes then he was up and back to walking the hallways.  Today I asked if I could take him down to the outdoor patio next to the cafeteria, for a walk in some fresh air.  This is first time he's seen the sun and had fresh air in  four weeks.  He seemed to like being outdoors, and almost fell asleep on me on the walk, but when we got back to his room, I asked him if he wanted to lay down and take a little nap before supper, and he said, "No."  I tired, but he just wouldn't lay down.

    Tonight during the visit, he pulled his sock off (which he does over and over) Kristi said, "Mom, look!" I looked down, and his toe nail was gone off his big toe.  When he seizured, he had hurt his toe and it was pretty banged up. I kept telling the nurses that his toenail didn't look right.  I showed it to the CNA that was helping with Todd tonight, and a little later, she found his toenail in the hall way. :-(  He doesn't act like it's hurting him, so we're hoping it's not.  

    They've gone State wide in the search for a facility for Todd. The latest possibility is over three hours away, and it's still a pretty big 'if'.  I keep praying that something would open up locally so Kristi and I would see him daily.  

     I can't begin to tell you what it's like to see someone you love so much slipping away from you. Everyday, more gone.  Sometimes, I can hardly remember what he was like normal, sometimes, I wonder where my Todd is at.  Tonight I watched an old home movie of a concert Todd and I did up in Kenmare 21 years ago, right before we left.  I have to say, we were pretty good. Always were a good team.  It was so wonderful to hear his voice, and hear him talk.  So thankful for the amazing invention of a camcorder!  Years, later we can still watch and remember.

    Today I also did something that I've put off for a long time. Canceling his cell phone.  Todd really hasn't known how to answer his phone for about a year now, but I've kept it for a safety thing, like if he got lost, maybe he would answer, or someone could help him call me.  I can hear some of you saying "that's not so, he answered when I called."  Well, if he answered when you called, it's cause I (or Kristi) was right there, and told him what to do, or opened his phone and put it up to his ear for him.   I didn't realize how hard that would be for me, I was crying while taking to the Verizon Rep.  Felt like another part of me was torn out.  I know that may sound dramatic, and a little emotional, but to be honest, it is emotional, when you have to do something you wish you weren't having to do.  

     It's been one day at time here.  Always hopeful that tomorrow will be better.  We are also waiting for that call from Tulsa to come in saying our new grand-baby is here. But as of today (10th)  it hasn't happened yet.  We're praying for Sarah and baby to have a safe delivery.  

     Thank you again for all who have prayed and said kind loving words.  Todd is such a great guy, and I can truly see how well loved he is by so many.  Thank you all for your support and love!

    

Sept 6th morning Update on Todd

While on the Medical floor they let Todd wear his hat, made him feel good. They won't let him have it on the Psych Ward.

How can I begin to describe what has been going on this week with Todd and I.  As I've posted in previous post, early Sunday morning, Todd had two seizures.  He was in ICU for a while then moved to Medical floor.  The staff there, was for the most part doing great with Todd, always having someone with him. (except when I was there, then they let us have our time together, but was always there, to assist if I needed help).  

   On Tues, I came home from the hospital to make some lunch for Kristi and I and after lunch, I told her, I didn't feel well, like my whole insides are shaking.  She encouraged me to just go lay down for awhile.  I did manage to sleep for maybe 20 minutes.  Shortly after awaking up, I got a very disturbing phone call.  I guess someone out there, doesn't think I'm doing a good job with Todd, or just wanted to be spiteful and mean.  Who ever this misinformed person is, they reported me to Adult Protection Agency saying I was abusing and neglecting Todd.  I was like WHAT?!!!  Amazing how in this country, you don't have to identify yourself to report someone, and that person reported is guilty until proven innocent.  I'm not sure where anyone could even get the idea of abuse and neglect with Todd and myself.  Lets see, I 24/7 watched him, bathed him, wiped his butt, cleaned up his messes, help him brush his teeth, helped him shave, provided good delicious food (way better than the hospitals)  laughed with him, cried with him, prayed with him, sang with him, up all night with him, trying to get him to go to sleep (I won't bother to continue, I think you get the picture).  But I guess in someones eyes that's abuse and neglect.   

    Todd has made improvement since the seizures on Sunday, and is back to walking better and more like he was before the seizures. His tongue is still swollen, but is healing, and he's eating much better now, and can finally feed himself again.  

    Then yesterday afternoon, while sitting with Todd in his room, and nurse came in with some papers saying "I just need your signature, before the transfer."   I said, "We're going somewhere?"  She then replied "No one's talked to you?"  I said I hadn't had a doctor talk to me since Tues. (yesterday was Thurs)  She got up and left the room.  One of the social workers came in to speak to me (not the doctor, who still has not spoken to me).  He (the social worker) said they want to move Todd back to the Psych Ward cause it's a locked unit, so he can do his wandering with out their worry of loosing him.  The Psych Ward is NOT a good place for Todd, I know cause that's where he's been for the last 3 weeks.  He's not crazy and does not have a psych issue. He has a brain injury with dementia symptoms.  What really makes me mad is no doctor spoke to me, and also on Monday (or was it Tues) the Neurologist told me he would not go back to Psych cause this is not a psych issue, this is a medical issue.  There's something  else wrong.  They have stopped the Parkinson's medication as they no longer think this is the issue. I never did think it was.   He is still on anti-seizure meds.  And of course they keep him doped up hoping he'd sleep.   When he got moved to the psych ward, I did speak to the Social Worker there, and told her how upset I was with this move, and the care (or lack of it) he's gotten on that floor.  All she could say was she'd speak to her supervisor.    

    All I can say, is in this country there is little place provided for the brain injured.  If you're mental retarded, there's provision. If you're elderly and have Alzheimer's, there's provision. But if you're young (I still view Todd and myself as young) and have a brain injury, there's not much out there.  People don't want to be bothered with you, and most people just don't understand it at all. 

    Now that Todd's back on the Psych Ward, I have very limited time I can visit him.  There's only one hour time slot in the afternoon, and 2 hours in the evening I'm allowed in.  I REALLY hate this!  

    On the home front, Kristi and I started our home school the day after Labor Day (when all schools should start by the way) and this makes the 21st year for me as a home school mom.  Kristi is also taking Band and Art at Century High School.  Tonight she'll have her first pep band performance at the Century football game. (don't ask me who they're playing cause I haven't a clue).  Kristi has been such a trouper, getting her work done here at home at CHS and also visiting her Dad.  Yah, she's still the same, she doesn't say much, but when she does, you better listen cause she has something usually profound and insightful to say.  Love that girl!

   The boys (Tyson and Philip) along with our wonderful daughter-in-law, Sarah, have kept in frequent contact with me.  Both boys wish they were here to support, but it's totally impossible, as Phil just started his internship in Colorado Springs, and Sarah is about ready to have her baby any day now. (her due date is 9-11)  But babies come when they want to.  I so want to be there for the birth, but know that might not be possible. Sarah's mom, Amy has promised to Skype or FaceTime me when the baby is born so I can see our new little bundle of Joy. (Tyson and Sarah live in Tulsa).  I can't brag enough on my kids, how they've supported me, and love me and their father so much.  I truly feel blessed beyond words.

   About 1 am this morning, I awoke, and was thinking about Psalms 23.  It keeps being a repeated theme over the last month for me.  But I got to thinking about it from not so much a shepherd and sheep, but maybe a cowboy's perspective.  So this is what I came up with:

The Lord is my cowboy, I don't have to worry about anything, cause he's got all my needs covered.

The leads me to lush green pastures,(rotational grazing of course) and makes sure all my water tanks are full.

He gets all my thinking straight, and leads me to places that are good for me.  I brag about him all the time.

Even when we're walking through rattle snake infested country, I'm not afraid, cause He's right there beside me, His rope and 6 shooter there to protect me.

He prepares my food all summer so I always have lots to eat.  He anoints my head with stuff to keep away the flies and fleas.  His care is nonstop 24/7 he's got me covered.

His cowdogs "Goodness" and "Mercy" follow me around, always getting me to barn where I'm sheltered and safe all my days. 

Sept 2nd Update on Todd

Came down to the hospital this morning to see Todd about 9 am.  He was still sleeping and had slept all night! I'm sure it still was a very drugged sleep, but at least he was sleeping.  We got him up when breakfast came, but he had a very difficult time eating as his tongue is beat up from the seizure.  He did manage to get down some scrambled eggs and oatmeal.  After breakfast he was transfered to Medical floor.  There will be a nurse by his side at all times.  He wanted to get back in bed and instantly feel alseep.  His body so needs to catch up on some sleep!    He did seem a little more alert this morning, but still very groggy.
   They did start the meds for Parkinson's this morning.  I can't say I'm convinced that this diagnosis is correct.  He does have some 'symptoms' of Parkinson, but they are also symptoms of other things too.  I keep praying for clarity and wisdom in all this for me and the doctors.
   Several people have asked if I got some sleep last night, and yes I did.  We got home from the hospital and I told Kristi lets put our pj's on and watch a movie and then go to bed.  I didn't quite make it all the way through the movie (Jungle Boook), (I missed my favorite part. LOL) I do remember Kristi getting up and turning off the TV and the lights and walking out of the room, I awoke again about 10 pm and headed to my bedroom to sleep. I was kind of afraid I wouldn't sleep again, but I did! Halleleujah!  Yes, I still feel tired, but I'm better than yesterday. :-)
    Thank you again everyone for your love and support for Todd.  Your kind remarks and prayers have been a great encouragement to me.

Waiting in the waiting room

Waiting rooms are where you wait.  That should be a profound statement, but today it only brings exhaustion and fear.  For today I sit in the waiting room of ICU.  I got a call at about 1 am that Todd had had a seizure and had fallen in his room.  A few hours later that call came again he'd had another one. This time he was transfered to ICU.  A CAT scan was done.  I can't tell you all the medical terms and such, cause I don't understand them, but they 'think' there may be some fluid in his brain.  So they did a drain from his spine.  They had to sedate him to keep him still during the procedure.  Thankfully he's sleeping now, something he did little of all weekend.  ( I think it was only an hour or two total).  

So I sit and wait, and pray, and wait some more.

"They that wait upon The Lord will renew their strength..."

I'm so thankful for my loving family that sat and waited with me for several hours, till I told them to just go home and rest.  Mom and Dad, Deb and Kim and Kristi you have shown love beyond measure.  Thank you to all the others that have texted or called and those that are praying.  Words can't seem to express my gratitude.