Roller coasters

   

     My emotions have been on a roller coaster for the past 3 weeks.  I met my folks at IKEA for a hand off of children.  They were taking the kids for another fun filled week!  Doing things with my kids that I should be doing.
     Emotional roller coaster #1. I am very glad that my kids have people in their lives that can take them so that they can have these experiences.  But it is hard because these are things that Jarrad and I had always talked about doing.  Ok, so we aren't big on camping and amusement parks but we did talk about doing these things ONCE just for the experience! And sure, there are things that we can still do but . . . Honestly, unless you are in this life, you won't understand and for me to explain it would be a enough for a couple of posts.  It may seem like a cop out to say that but I refer you to my statement that unless you are in this life, you won't get it.  You just won't.  And I love you and I hope you never do.
     So.
    I had been looking forward to walking around the store and seeing all the neat things.  But IKEA on a Saturday is CRAAAZY!   And then I watched all of these couples and young families...Wow.  Just a sucker punch of what should have been.
     Emotional roller coaster #2.  So I pulled a deep breath in and tried to move on - because that is what you have to do.  Not should but have to do; to go into the past is a pathway to crazy town.
    So I went to another version of crazy town and went far into the future!  See, another lady in my support group lost her husband.  Every 3 months or so, one of the wives or girlfriends will post that they are leaving the group because their loved one has died.
    Jarrad hates it because I tend to get a little crazy.   I get on him to update our "in the event of something bad happening" folder.   But this time, I was more introspective.  I contemplated my impending widowhood.
    When you get married, you know in the back of your head the whole death till you part vow.  But no one thinks about what it really means.  At your wedding, it is romantic and sweet - you will be together for the rest of your life!  Awww.  You just don't think about that there will be death; as in, one of you will probably die before the other.  If you do think about death,  you picture Nicholas Sparks' The Notebook.  At least, that is what we did.  But when trauma happens, that idea of parting at death becomes less romantic and more real.
    The reality is that I will be a widow.
    This roller coaster has no silver lining of gratefulness.
    Which brings us to emotional roller coaster #3.
    On Monday, Jarrad was admitted to the hospital for kidney failure.
    He had been feeling off all weekend.  I went to meet my folks to pick up the kids after their fun filled week.  Monday came and he seemed fine if tired.  I went to work.  Usually, we touch base with each other during the day via text.  He told me that the wheel chair guy was there and then sent me a weird text.  So I texted back with "huh?"
   Silence.
   Sometimes, he is on a conference call and it takes a while  for him to reply but after an hour and no response, I called.  I called several times.  Finally, I called a neighbor.  She came over, woke him up and Jarrad called the doctor.  They told him that he needed to be admitted.
     Sidenote:  The wheelchair guy left a note that said, "Mr. W, I couldn't wake you up.  Please sign and send in these papers acknowledging receipt of parts." 
     WHO DOES THAT?
     Fortunately, he was "by definition" in kidney failure.  His creatinine levels were at 2.0.  High normal is 1.3.  Jarrad's levels prior to his taking the vancomycin were 0.7.  He was taken off the vanco and flushed with saline.
    And his levels dropped and he came home.
    Even after you get off a roller coaster, you still have the elevated heart rate, the fight or flight response brought on by fear, and the the whiplash from all the ups and downs.  It takes a while for all of those things to settle.  And the more loops a roller coaster has, the longer it takes.
     I hate roller coasters.

The awkward introduction

     It has been over three years since Jarrad was paralyzed.  Most folks who know us - know our story but there are always new comers to our lives who don't.  It makes for some awkward moments.  I mean, how do you bring it up to new coworkers that your husband is paralyzed?  How do you explain the answer to an innocent questions like -  Have you gone/been?  Do you? Why don't you? I could say yes (or no), but then there are the follow ups to that response and another question and, well, the list goes on.  My husband is paralyzed doesn't naturally come up in conversation. 
     Most folks take it in stride  - after you see it register on them.  It is actually quite interesting as you can see the thoughts being processed. Sometimes, that is all there is but eventually, there are questions.  I never mind answering them.  I was, am (?) a teacher.  I believe in answering inquiry.
    And eventually, the comments come about how brave, strong, devoted, fill-in-the-blank-compliment I am.  I say thank you and then I have always answered, I love him.
    The answer is so simple.  I love him.  The end.  That is all I need; that we need to handle all of the complications that come along with wheels.  
    But as I thought about my answer, I realized that I was wrong.  I did not come to this conclusion on my own.  I belong to a fabulous online support group.  It is an amazing group of women who all have men who are wheelers.  And as I read the various threads, it dawned on me that it doesn't matter how much I love Jarrad.  I could love him with all of my heart but if he didn't love me; if he didn't try as hard as he could, my love wouldn't be enough for our family.
    A marriage is not about one person carrying the other it is about working together.  I tried it.  For a measly 2 months, I tried to be enough.  It broke me.  I couldn't be like some women who try for years and years - I am a pansy!  It is exhausting trying to be more than enough for everyone.  And when I told Jarrad I couldn't do it, he stepped up because that is what you do when you love someone.  He loves me as much as I love him; otherwise we couldn't do this. "This" is hard enough.  "This" is extra expense, extra time, extra pain, extra patience, extra grief, extra disappointment. 
     We still fight, we still have "I don't like you very much right now" moments.  He is still (at times) a jerk but then so am I.   But he is here for me and the kids.  He is involved. 
     Yes, I love him so I am staying but he loves me so that I can stay and love him and not resent "this".

Hi...

    Hello... Hi...  I am still here.  Tired, sick with some crap that just sits in my throat but here.   The holidays are over, the kids are in school and Jarrad is back to regular work schedule (he was doing some training so it was not normal).  Everything is slowing back down. 
    Or is it?
    My folks came to visit for Christmas.  That was nice.  Christmas was good.  Jarrad was up and healthy. And even though we limit our kids gifts - 3 gifts and Santa fills the stockings - they still get a lot of crap toys.  Favorites were: Dinotrux, Snap Circuits, books, and a friendship bracelet maker.   
    Jarrad had training to do and so he was around more.  Work ... is ... good?  There is a lot of transition right now and you know me, I like consistency! 
    You would think that things would slow down.  And then you go to the doctor. 

     Around Thanksgiving, Jarrad developed a blister like spot on his left leg - the broken femur, the botched HO surgery, the infection removal and the 2nd infection removal and removal of the pin that fixed the femur,  the shattered hip bone leg.  Hmmm.  Weird.  Go to the doctor, she isn't sure what it is.  So we treat it like a pressure sore thinking that one of the "dissolve able" stitches (you know, the ones that I had to finally pull out like 6 months later) was rubbing its way to the surface or it was scar  tissue.  We have been using essential oils in a cream and massage so maybe it was something to do with scar tissue?  In any case, it was the holidays and there is NO time and his GP didn't seem concerned. 
    And he had an appointment to see the (good) surgeon in the 1st week of January. 
    It is another infection. 
    In the bone. 
    (head banging on key board  dsksf sldkf sldkfj  weoui kkkkwlllllwppppppppppp,,,,,,
...........................................................................................................................................
................................olo000000000000000000000000000000ddddddddddddddddd)
    So here we are, already breaking our 2015 New Year's Resolution to NOT have a trip to the hospital. 
     Sigh. 

     Happy New Year . . .

It's like this . . .

   After I had Emma, I experienced postpartum. I didn't know it at the time.  It was hard.  It is hard to describe.  Slowly, I came out of it.  I think I would have been better if I had some medication but sometimes, the symptoms are subtle.  But, slowly, it got better.  I had a good husband who did what he could to help.  He brought home a pump.  I cried.  It was better than roses or caramels (prefer them to chocolate). He encouraged me to get out. He kept her and got up with her.  And it got better.
    I remember the first time I left them alone.  I went to the library.  Keep in mind that it is only a 10 minute drive from our house.  I think I was gone for a total of 30 minutes.  I was so nervous.  I was jittery.  I got a book and came home.
    But I remember the feelings.  I remember the anxiety and nervousness.  The something catastrophic is going to happen feeling.
    But I went anyway because I knew I had to for all 3 of us.
    Jarrad has been driving for 3 weeks.  He has gone to work, movies with friends and a business type dinner thing.
    He has had some issues.  He parked too close to the line and someone else parked on the hash tags.  Fortunately, he was with a friend who was able to move the van back and he could get out.  We talked about what to do if he was alone and that happened.  Note - asking a complete stranger to move his vehicle is not what we are going to do.  Asking an employee of the establishment or asking for the owner of the car to come move his or her vehicle are more viable options.
    He lost his sliding board but someone was able to help him.  He also lost his balance a bit but he is getting better at transfers.
    But the feelings are there again - the no breathing, nervous, "how can I leave my baby???" feelings.  
    Last week, I took the kids to school before he was safely in the drivers seat.  I only breathed normally when I passed him on my way back into the neighborhood.
    He needed to pick up the kids from after school.  He needed to leave by 4:30.  I stopped breathing until he texted me and said that they were home safe.  I saw that I had missed a call and had a few seconds of panic until I saw that it was my mom who had called.
    The second day of him driving to work, he got busy and forgot to text.  Didn't breathe until he answered my own "Hi Honey, I hope you have a good day" and by the way, could you please text me NOW?!? text.
   I need a few weeks of him driving.  I know he is fine.  It is just me.  It is just my fear.  I need to get used to this new normal.  And I know that I will.
    I gradually lost the postpartum anxiety.  I learned to breathe.  I met other moms and lost the fear.
    Already, I don't worry so much when Jarrad drives to and from work.  He has done it enough by now that I know he will be ok.  We will be ok.
    And the more he drives other places, new places, the more I will be able to breathe. 

drum roll please (and it isn't even Christmas)....

     We have the van!  Yes, Max is home and Jarrad is driving.  In fact, he went to work today.  And no, I didn't follow him to work- even though I was tempted to!  It is not the first time that he drove to work.  He has driven that way before.  Driver Rehab let him set the routes and so he drove to places that he would frequent.  Today, work.  Tomorrow, movies with friends.  I don't know where else he is going to go but I told him to have fun this weekend!
    So let me introduce you to the newest, and very vital member of our family!

The driver's chair swivels so that he can transfer into it after he rolls up into the van.  The chest strap goes on his chest as an added safety measure. The remote turns the chair.  The chair goes up and down, back and forward and left and right. 

The stick shift looking thing controls the gas and break.  It is Jarrad's hand control. If you look closely to wear the foot pedals are, you can see a cover.  This is to prevent Jarrad having a minor spasm that causes his foot to accidentally hit the foot pedals.  The cover comes off and I can use the foot pedals to drive.  I am not licensed to use the hand controls nor would I want to.  There is also a foot rest that goes in so that it is easier for me to use the pedals - they thought of everything!  Jarrad has a turn knob on the steering wheel that clips in and out.  If I want to drive, it is very easy to take those 2 things off.  I just need to not be startled when the the hand controls move with the pedals! 

Transfer to driver's seat.

Adjusting. We have a griper in the van in case he needs to reach for anything.  I have to organize the van so that everything is right where it needs to be.  I will post that when we have figured out things but velcro, 3M and 31 are going to be a part of that!

Off he goes.  He did text me later and say he got there. Although, the sliding board slid off his chair (see why I need to organize?).  Thankfully, a coworker was there and got it for him.
I have been the only driver for 2 and a half years.  Now, my driving strike begins!
 

Update on Jarrad.

    My skills include:
    1.  Changing sheets while someone is in the bed.
    2.  Knowing how to change a wound vac.
    3.  Being able to flush a PICC Line.
    4.  Knowing how to handle a pressure wound.
    5.  Dressing changes
    6.  Multiple ways for taking care of constipation.
     What my skills do NOT include is a medical degree.  But if we keep going at this rate, I just might be able to pass my boards.  I feel like if it could happen to a spinal cord injury, it has happened to us.
1.  Roughly 60% of wheelchair users get carpel tunnel - guess who had carpel tunnel syndrome?
2.  About 20% of SCI patients have hetertopic ossification. And guess what? Yep.
3.  Osteoporosis and broken bones? That's right!
    Jarrad and I were talking and we came to the conclusion that the initial injury is still ongoing BECAUSE of the complications that come as a result of a spinal cord injury.  That makes it hard to say, ok, we got this now.

A new strap and new glasses

    Recently, we had a scare.  I was looking at his leg and one of his smaller incision spots was red and warm.  Not hot, and it blanched but after the last time, we were just scared.  It was nothing and I did some research and took a course of action AND made a doctor visit.  We were so afraid (paranoid) that the doctor was going to send us back to the hospital.  I don't think that Jarrad would have been able to go through the doors.  It would have been too much.  Fortunately, it was a surface infection and we did the right thing but that weekend was rough.
   Now, he no longer has the top of his right femur.  The shattering of the bone due to the unsuccessful surgery and subsequent infections has caused it to be non existent.  The consequence is that he is sitting crooked in his seat.  He is missing bone, after all in one hip, and has too much in the other.  We have tried to remedy this by putting a wedge under the one hip and "tying" him to his chair to help hold him straight but . . . He still leaning and that puts pressure on his spine.  WHICH contributes to his pain. 
    And there is nothing that I can do about it.

    The more I learn about the human body the more I learn that humanity is pitifully ignorant about the human body. 
     At least it isn't just me!  (Always have to find a positive).
    There is so much to learn and I have learned to be wary of doctors who think that all bodies are alike.  Each body is as unique as the soul that inhabits it.  In fact, I don't think that we should discount the soul in diagnosing the body.  I think it plays a large part in the why some things work for some folks but not for others.  But it is hard to study and hard to put into numbers.  Why, WHY do we persist in the idea of uniformity? 
    Sigh. 

too good to be true

   Remember in my last post when I said we actually had a date?  Remember my sarcastic comment that we might get it by Christmas? Remember when I said I wasn't going to hold my breath?
   So glad I didn't hold my breath!
   Yes.  It just might be Christmas before Jarrad gets to drive.
   Please just laugh with me now because otherwise I just might cry.  And I think that Jarrad is the one who gets to be frustrated and angry about the whole thing.
   Yep.  Apparently, they need more time to complete the modifications.  Modifications that were a part of the original discussion but never made it into the plan probably because of the time lapse issue.
    YEAH!
    Ok.  I know I said I would be patient so I am going to take a deep breath.
   But there is always that straw - you know that tiny little thing that sends the whole pile toppling over.
   Now we won't have the van and we are going to have to pay for a driver for 2 or more weeks.  Now I have to take Jarrad to his doctor appointment on the 20th - not a problem for me but he was kind of excited about doing it himself and I can feel his disappointment.
    But here is the straw.
    Instead of calling him and asking if he was available for the new date - he is kind of the most important person there; everyone else is not really necessary or they can skype in - no, really they could- a mass email was sent out with a fixed date.
    Um, no.
    You don't  ASSUME; you call and check the CLIENT first.  IT IS OUR VAN.  JARRAD will be the one DRIVING IT!  Don't assume that he is available whenever.  
    This is not the first time that we have run across the mentality that because Jarrad is in a chair, he does not need to be consulted about a schedule.  You know, because folks in wheels don't work and because they can get wherever they want at any time.  I am not being too sensitive about this "assumption" either.  I might try to down play it but the assumption is there and I have proof.  How do I know?  Because when the job is mentioned there is an "oh" that happens.
    A loaded "oh". 
    An "oh" that really says, "I didn't know that you were working.  I thought that you were disabled and therefore, you would not be able to hold down a job.  Wow.  My mind is blown with the concept that you work and/or that someone would hire you."
    Yes.  It is not as simple for Jarrad to get to work as he used to.  There are lots of things that have to be taken into account such as how to get to the office.  Everything else is a matter of schedule and tools - a lap desk, a bench to stretch out on (you don't sit for 8 hours straight), a parking spot where he can park, height appropriate tables, wide walkways, oh, and a bathroom stall that he can use (as in don't just use it because you like the bigger stall).  But other than that, he does a great job!  My response to the "oh" is REALLY?
    Wow.  I think I needed to vent.  

The Van - whose name is Max

      The kids named our vans.  Yep, the Mini Vandals named our minivans.  The blue - excuse me - "slate" van is Vanny.  And for some reason the green (cypress pearl) van is named Max.  I think it is because my BFF said it was "Vanny to the max".  The kids liked it and, thus we were named.
      In any case, about 2 weeks ago, "they" came to take the van for it's modifications!  YEAH!   Part of the bid for modifications was that they come and get the van.  The pick up time was between 1 and 4.  Yep, as bad as the cable guy and, just like the stereotypical cable guy,  they came at 5:15.
    BUT they came to get the van!
    Finally!
    On September 30, we went to Van Products for Jarrad's first "fitting".  We spent 2 hours there. He did two transfers, made adjustments on seat height and placement of all of the "things" - latches for chair tie down, accelerator, break, emergency break etc.  The mechanic was awesome - he was willing to take things out and learn to do new things (ie put the chair swivel switch on a remote).  He took lots of notes so that it will be "just right".   
     It has been a long time coming for us.  At least it seems that way.  And it seems like every time we turned around there was another hitch.  But finally, the good news, we actually have a date for the van to be DONE!  And we have a date for Jarrad's final driver training.  It is NOT Christmas!  Although, I am still not holding my breathe that we will get it. . .
     Sigh.
     So why has it taken so long?
     Well, we started the process in the fall of 2012.  Jarrad was supposed to get training that spring but that got delayed due to carpel tunnel surgery.  Then the state made policy changes - YEAH for bureaucracy!   That resulted in more paperwork and the delays that correspond with paper being sent to different places for signatures.
    FINALLY!  We were told that we had a van.  We finished the paperwork, took possession of the van and it came home.  And we enjoyed it.  And waited for more paperwork to be completed.

    The timeline, as it was explained to us, seemed pretty straight forward.  However, it is never that way.  What you need to account for is human nature.  Our engineer had a personal issue - that is understandable - but what isn't is that when we called about it - which we did after 2 weeks of not hearing anything - we were told that no one could get a hold of him.  This was a  trend that continued for a month until finally, another engineer said he would be out to do the evaluation and write up for us.  THEN the original engineer said he would get on it.  That still took 2 weeks.  So we got the van in April (I think) and now it is the very end of July and we (fingers crossed) should have it by the end of August. If the original plan had been followed, we would have had the van last year at this time.  But it was not and we have the van this year.  I will be grateful.  I will be patient and I will celebrate this new addition.
     Just in time for school to start. 

HOME

   Jarrad is home.  Finally.  I hope that this is the end of hospitalizations for a while.  I know it is not because we have another surgery to go through but I am hopeful that perhaps this one will not be as complicated.  Time for more research!
    So, the reason why we were in the hospital (6 days) for so long is because they needed to find out what kind of bacteria was causing the infection. It was a strep versus a staph infection Jarrad's was a strep infection.  Apparently, this is good as a strep has more antibiotic options. 
    This is where I am (again) grateful for my connections.
    Ok, I am fully aware that the human body is complex.  I am also aware that medical staff do not tell you everything - for various reasons.  They don't want to alarm you.  They assume you know.  They don't know - what ever it is.  So I am grateful that I have folks who are able to fill me in.  For example, one of Sam's friend's moms is a nurse.  She has offered to come over day or night if we need help (not a "fake" offer either - you all know what I am talking about).  She was able to explain that doctors/hospitals want you to stay until they determine what the bacteria is and what it will take to knock it out so that you don't have to come back in.  Now,  maybe Duke assumed that we understood it or thought that someone else had explained it or whatever.  I am not complaining at all about this.   It is a side effect of not being able to always be there with Jarrad and/or not being in the medical profession. I am just grateful that I have folks that I can go to for answers. 
    Home health is coming in tomorrow.  They will teach us to what we need to do for his antibiotics and wound care.  I will add it to the list of skills that I am acquiring and hope to never have to use again. 

undescribable

    There is this feeling when you leave someone you love in the hospital.  It is like you have no tether - no concentration at all.  It is the reason why folks pace.  And then, when you get the all clear, it snaps back into place and you are grounded again.
    I don't like waiting in the hospital for that reason.  I am a pacer.  I would be annoying!  Today, I have been cleaning out the closet, caulking the trim, moving paint to smaller containers, putting together my mending/small sewing projects to work on, weeding and doing laundry.  None of those things were finished - my version of pacing.
    And jumping every time the phone rang.
    Finally, at 3:22, I  got the call I was waiting for.  And I was grounded again.

PICC Line

    They opened the side of his leg and found infection.  It was deep and it did touch the hardware.  This is bad as they had to remove the pin and screws.  The good news is that the pin seems to have acted as a wall and prevented the infection from moving deeper.  It also appears that his femur has fully healed and they do not need to go back and put in another pin - which was a possibility.  They are "very hopeful" that they will not need to.  He did very well with the anesthesiology.  His hemoglobin was low again - 8.9 for my nurse friends which is down from 11 from last December.  I am perplexed and a bit concerned about that but no one else seems to be.  I am going to be more aggressive about this later.  So they did give him a unit of blood but I think that was more preventative than because he really "needed" it.  He will stay in the hospital till they determine the strain of bacteria - probably till the end of the week -and are able to give him the correct antibiotics.  He will have to have a PICC line - similar to the picture and has to have IV antibiotics for 6 weeks.  Home health will be out for that - yeah.  I think that this doctor is not playing around!  We have had Dr. Riley before and she is really good.  I wish that she would be willing to do the bisection of his HO but I understand why that may be more than she is comfortable with.
     Sigh.
    Well, that is it for now.  Don't worry, I will keep you updated! Thank you for your prayers and good thoughts - don't stop!   I really hope that this is not the precedent for year 3.  I just want it to get into a routine!

I got nothing

     May 19th.
     It has been 2 years since life as I knew it changed.  And today, I took Jarrad back to Duke.  He has an infection in his leg.  Probably been hiding since his bisection (heterotopic) surgery last November.  Tomorrow, he will have surgery to remove the infected mass and will then spend the next 4 days in the hospital receiving heavy duty antibiotics.
    I am trying to hold it together.  You know - just the date and the parallels.  How many times are we going to have to do this?  I am so tired of hospitals and complications.
    I have a lot of sympathy for Job.
    I will wait till later to have my cathartic cry.  And then I will play my new theme song.

 

Hey Babe - you need to add this to my power mix!

New arrival

    It's here - in our driveway.  It has been here for over 24 hours and we just drove in it today. 
    It is shiny.
    It is new.
    It is just a little bit scary.
    It is not ready for Jarrad to drive yet.  The bids are out and we are waiting to see who wins the privilege of  modifying the car. I guess that this is what you call the basic package - not customized for anyone.  In 2 weeks, they will take it away but for now, we can get used to the idea.

The color is "cyprus pearl" - it is a gray green.

The van actually tilts to the side.

Foot rests for those that sit in the back.

The ramp folds up to sit flush against the door.

Those tracks are for the tie downs for Jarrad's chair - so he is nice and secure. You ca also see one of the tie downs.  There are 4 and they are movable. 

A round of applause for the model! If you look at the above picture, you will see the passenger seat.  That WHOLE thing comes out and Jarrad can ride shotgun.  There is a seat belt attachment so he can buckle up properly too.

    It is just a little bit exciting.

ARGH!

    So as a cherry on the top of my not fun day, I find out that I missed kindergarten registration.  I know it is (probably) not a big deal - just register Sam sometime next week.  It is not like they assign classes before the summer is over...  still it just is ... perfect.  PERFECT! 
    Today, we were supposed to go see Jarrad's van.  He was going to get evaluated as to the specific modifications he needs.  THEN, we would pay for the van (and start payments to the loan company) and it would be OURS - in fact, it would come to our house and sit there for roughly 2 weeks while the bidding process goes on for whoever is to make the modifications on the van.  THEN it takes 6 - 8 weeks to make the modifications.  In that time, he will go back and check to make sure the modifications are correct.  THEN he will go  back a week or 2 later to again check out the modifications and a week after that, we take it home.  THEN he gets more driving instruction on his vehicle- roughly 5 more hours.  THEN he can drive it. 
    This process has been so convoluted.  We started it in September of 2012.  That was just for the paper work.  By the time that got approved, it was the holidays.  We had to have an initial evaluation for driving and vehicle.  At that time, Jarrad had carpel tunnel.  We made the mistake of telling them that and suddenly the wheels stopped turning until that surgery took place.  Then in June, we were told that there was a government policy change.  Yeah for more paperwork and approval process! 
   It is a wonder that I have hair left.  Jarrad and I go through cycles of who gets to be frustrated. 
   Finally, he took his driving lessons and got his license.  By that time, a whole year had passed.  And we hit the holidays again.  YEAH!  That added another 6 weeks to the process.  I am so a grinch because I hate last year's holidays. 
    And now, today, because someone dropped the ball with confirming, we didn't get to check out the van so it is pushed another week into the future. 
   Ok.  I am grateful that Voc. Rehab is there.  Their job is to help retain and train for employment.  It is cheaper for the government to do that than to pay out social security.  Right now, we are paying out of pocket for Jarrad to be driving into work 1 day a week. 
     Well, why can't you drive him?  Because it is a 45 minute drive to work.  And then I get to come home and do laundry, grocery shop, fix food, homework, housework and my own part time gig. 
    It is too much.  One day, between kids and Jarrad, I was in the car for 4 hours.  
   I know that I should be grateful that Voc Rehab is paying for the modifications.  That way we don't have to pay 65,000.  We are just paying what we would pay for a new van.  We could never afford this on our own.  Of course, before last June, we would have been paying the amount you would pay for a used van ....
   But the ineptitude of a paper shuffling government that allows for severe abuse of the system in some cases and ridiculousness of it's own self  - I mean, 4 months of passing our application around for signatures?  And when our signatures are needed, we have 24 hours to sign AND return? Oh, and THEY don't have to honor their original agreement with us?  COME ON!  REALLY?  
    I am beyond frustrated and about ready to give up hope that we will ever see the end of this. I will order cake (Ahem, ginger cake, H) and ice cream to celebrate if we EVER get it here. 
    But I think that is about as likely as having U2 play at my 10th anniversary.

Follow up visit . . .

     Jarrad went to see Dr. Dahners yesterday.  This was a 6 week (?) follow up visit to see how successful the surgery was.
    Ever since THE EVENT, I feel like we have been blessed with surgeries - they all seem to be successful and we have had great doctors until this one.  I feel like I should just prep myself for bad news every time we see this doctor.
    So yesterday - school was canceled so we ALL went to UNC.  At least I know how to get to all the hospitals now.  We dropped Jarrad off because the 4 - well, 5 when you count Wheels- in an exam room is about 3 too many.  He got x-rays and found out that there has been some bone regrowth.  We don't know if it has stopped or if it is slowing or if it is growing like a run away train.  To say we are disappointed would be an understatement.  And scared.  Very scared that it will keep growing again which means - perhaps - another surgery.  We know we have to do the left hip in November but we were kind of hoping that would be it.  Only one surgery this year.  And now, maybe another in 2015.  I really hate waiting. We are going back in October to get ready for his other hip. 
    Hey - we get to plan our lives around surgical procedures!  YEAH!
    Ok, good news.
    He still has all of his range of motion - inner and outer, up and down.  The pin in the top of his femur - you remember where the bone shattered - has not moved.  Whoo.  That is good and it is highly unlikely that it will move now.
     The wound vac is off.  Jarrad says he feels better with it off - no more pins and needles feeling.  The site looks great. The wound vac is truly amazing.  With it off, he was able to take care of himself without any help this morning.
     Now to evaluate Dr. Dahners.  He is very knowledgeable and takes each patient case by case.  We know this because we know someone else who has had this procedure done and what we were told is different from what that person was told.  He does research on newest techniques and information.  His is people awkward.  Not cold or unfeeling but awkward.  He doesn't explain why you should do something (ie lift the leg to move the blood around so it doesn't stagnate and get infected).  I think that he would benefit from better support staff as we have had to repeatedly ask for records to be transferred to Jarrad's GP (who is awesome) and she didn't get them even when she called.  However, when you talk to Dr. Dahners directly, he does it.  That isn't his job! That is his office staff's job. And that is where I feel the problem lies.  If he weren't the best doctor in this area for this procedure . . .
    So the lesson that we have learned here is this:  You have to like your doctor.  If you don't - go see another doctor.  Otherwise, you don't want to go!  And we need to have doctors - not all the time - but we need to have doctors we trust and like.  I love my kid's doctor, Dr. Fletcher, and Jarrad really likes his GP - Dr. Beck.  He also likes his urologist but we have found another urologist that may be more current with trends for SCI patients. 
   Whoo, I will get off THIS soapbox but we had 3 doctor appointments this week and well, you just need to have doctors you like and trust.  
     Just sayin'.
   

Food

    I have never been thin.  Well, maybe before puberty. . . I wish that I could go back to my pre- kid days and tell myself that my body was fabulous because I really wish that I were 25 lbs lighter. Sigh.
    When Jarrad was in the hospital, I lost 20 lbs.  I don't know how because I made sure I ate 3 balanced meals. I had to make sure because the night of  THE EVENT, I didn't really eat.  I did munch on a granola bar simply because my friend gently twisted my arm.  She was right - I needed to eat and drink water.  Funny, how things stick with you. Later, I was so light headed after I finally saw Jarrad after his 4 hour surgery, my knees wouldn't hold me.  I went down and all I could think of was that I couldn't let myself get to that point again.  I needed to keep it together and part of that was eating - even when I didn't feel like it.   
    That incident that made me  hyper aware of nutrients.  I made sure I had fruit and veggies and protein every day - 3 times a day.  Oh, and water.  Lots of water (and one large chi tea latte daily- the hospital did have a Starbucks).  I didn't exercise at all - unless you count the daily walk from the parking garage to the hospital.  Still, I lost 20 lbs.  Friends tell me it was my nervous energy.  I don't know.  I do know that others in my situation have also reported weight loss when their EVENTS happened.
   They also reported a 20 -30 lb weight gain when things settled.  Settled means that loved one is home and the nurses and therapists are gone.  It means doing all of it on your own.   I think I gained weight because I justified eating like this:  by 8 everyone is settled.  Jarrad and the kids are asleep and I haven't had a chance to eat dinner so I sit down to eat and keep eating because if I am eating, I am taking care of myself -nutrients-and therefore can ignore the laundry, dishes, dusting, sweeping, mail, bathrooms - everything.  Because it is only 8 and there is so much that I need to do but if I was eating, I was allowed to sit down. 
    I kept on eating because it felt good.   Food is energy and I was sooo tired.  And I gained 25 lbs.
     Sigh.
     So now I have to change my mind set.  Food is energy and I need to determine if I am hungry or just tired.  It is a hard habit to break.
   Especially when you are watching food competitions or reading about food that friends make (you know who you are!).  I don't like to cook but I love it when I make a beautiful dinner for my family.  There is a source of pride in it for me.
    I try to like cooking - I even try new recipes.  And sometimes, I find one I love.  Like the one pictured above for pork chops.  I don't like cooking pork chops - don't care for them BBQed and stuffing is too involved.    But I stumbled on this recipe - don't know from where - Spark recipes?  and fell in love with it.  YUM!  Quick,  easy and uses the grill so little clean up - love the grill!
    A heavy 1/4 cup of honey
    3 tbs of soy sauce
    6 cloves of minced garlic (or I do 4 tsps. of the minced in a jar)
    6 pork chops
    Mix together the honey, soy and garlic.  I like to heat it in the microwave for 30 seconds to warm up the honey - makes it easier to pour.
     Pour over the pork chops and let marinate over night.
     Grill until done.
     You can boil the left over honey soy sauce for dipping if you like.  2 minutes folks - rolling boil!
    Serve with Jasmine rice, baby peas and peaches.
    And wish that you had doubled the batch! 

• Calories: 204.3 
• Total Fat: 5.7 g
• Cholesterol: 48.4 mg
• Sodium: 518.2 mg
• Total Carbs: 18.4 g
• Dietary Fiber: 0.2 g
• Protein: 19.9 g

just can't seem to get started . . .

   I have started 5 (5!) posts and haven't finished one of them!  I just can't seem to get started.  So here is a brief run down of our week.  Perhaps this will kick me into geer.

     Monday- kids are home from school.  Fed a neighbor's chickens and got to keep the eggs.  Gave half away and still ended up with 18!  A couple from church stopped by with a rotisserie chicken just because they wanted to.  Isn't that nice?
     Tuesday - Lots of cooking.  Fed the chickens and got more eggs.  I had a "moment" because I am crazy and want everything to be just right.  Jarrad stepped, well, rolled in and made cookies with the kids so I could get stuff done.   I need to find a way to relax so I don't freak out at times like this.  Maybe it is poor planning or stress - who knows!  I will figure it out later.  At least we had dinner for that night! Later, we went and looked at Christmas tree lights.  This was the first time Jarrad had been out of the house since he got home.  Usually, we go to Christmas Eve service and eat at a Mexican restaurant with friends but their kid was sick and we were still being careful of Jarrad.  However, the tradition will resume next year! 
    Wednesday - Ahh, Christmas Day.  We started in bed - opened a few gifts and then the kids wanted to play with what they got until after breakfast.  No, really it was their choice.  I know, weird.  Had breakfast and opened stockings.  Finally convinced Jarrad that the breakfast casserole he always had as a kid for Christmas day was no longer going to be made.  The only one who likes it is Jarrad.  I feel bad but after having it for 9 years, I think I can say that I really tried.  I think that kids have also had enough "no thank you" bites to say that they have tried.  New tradition next year.  We then opened more gifts - all great - thank you everyone!  And then, took a nap!  My favorite gift on Christmas day is that there are so many new toys that I can take a good nap.  Friends came over for dinner and we all had a good time talking and playing Star Wars Operation.

       Thursday - Jarrad's follow up appointment - dun dun duh!!!  Everything looks good.  Finally!  I feel like with this doctor there is always the other hand.  He will see us in 4 weeks for x rays.  We will probably wait until next November to do the other hip.  We need to wait a year just in case we need short term disability again.  Jarrad and I talked and we both need time to recover.  We also discussed that while we were as prepared as we could be - research, talking with others; we are going to be even more prepared this next time so that *hopefully* we won't have the complications that we did this time.
    Friday - Did a little shopping.  Found an organizer for my side of the sink - whee!  It is the little things that can make a girl happy.  CLEANED UP ALL CHRISTMAS DECORATIONS!  Yep, all put away!  Go me - go me!  I like to start the new year that way.  Had friends over for pizza - tried a new place - mah.  It was ok.  But the company was great!
   And now it is Saturday - a whole day of potential!   

Jarrad is home (again)

   This adventure has lasted 30 days.  I can't believe how long it has gone on.  And it isn't even over yet.  We go back to see the surgeon on the 26th.  This means that we will probably have the wound vac till then.  At least it is just the size of a small purse. . .
    I am tired.  Jarrad is tired.  The only ones who aren't are the kids.  Of course!
    I wish that I could say that this is it for us but we have to do the other hip in the spring.  Jarrad is sitting up straighter and looks so much better.  He says he isn't in as much pain and if his face and eyes are anything to go by, I believe him.  I think that we will be more cautious next time.  We will plan more for things to go wrong as opposed to going perfectly.  We will also know more.  I think that we may insist on a transfusion next time.  And really force the issue of home health visits.  
    As for Jarrad, physically, he has a huge hole in his thigh.  It is about 1/4 inch deep and as round as a quarter.  The wound vac is supposed to keep it dry by sucking any seeping blood out.  Somehow, the vacuum also speeds up healing.  We just have to make sure he gets lots of protein.  Then we have to make sure we massage the area to reduce scar tissue.  He also needs to get a lot of iron.  When we left, his HGB (hemoglobin) was at 9.  He did lose some blood when he was in surgery.  Still, 9 was higher than we left with the first time we came home.  Emotionally, he is just glad to be home.  He knew he needed to go and he knew he needed to stay but he was ready to leave on Saturday.  Mentally, he is ok.  He is on short term disability for the rest of the year and he plans on working hard with OT and PT to recover his lost strength from being in the hospital.  Did you know that for every day you spend in bed, it takes 2 to recover?
   The kids have their programs this week so he needs to save some strength for attending those.  They should be a lot of fun! 

Update # 4,598

    Blah -  I hate this. All of it.  I have been putting off writing this because my brain hurts when I think about it - I don't understand all of the information that I am told.  And sometimes, I feel like Jarrad and I are hearing 2 different things because I am not always there when the doctors/nurses come in.  I also hate the fact that I am relieved that Jarrad has round the clock care that isn't my bumbling self.  I hate the fact that he isn't home and is stuck in a hospital that is far away.  I hate that the house is a wreck and that I can only sleep when I am exhausted.  I hate that is December and he isn't here to enjoy my determination to do everything right!
    I will try to convey what I know and understand so far.  On Wednesday, it was decided that they were going to debreed the incision - that means clean it out surgically.  The doctor thought that the bone was creating a bowl and that the blood was pooling in it - like a stagnate pond.  Oh - and did you know that blood separates like milk?  Maybe I did a long time ago . . . anyway, the stuff leaking out was the plasma part and the rest was settling into the "bowl" and becoming a breeding ground for bacteria. When we went home the first time, the doctor told me to lift Jarrad's leg to 90 degrees when he laid down to push the blood out.  Ok.  The first time I did it, blood went squirting out everywhere!  Yeah.  It was gross.  I don't know why I thought it would stay inside . . . but then it started seeing out on it's own and bleeding through the bandages . . .  that is when we went to the GP and consequently to the ER.
    Back to Wednesday, December 4th,  Jarrad went into surgery around 3 pm.  Fortunately, there wasn't much of a bowl and the infection had just started.  They were able to clean it out.  Unfortunately, in the original surgery on the 20th, some of the bone on the top of the femur broke off.  I am not sure what or how but it is probably because Jarrad has osteoporosis. I am not sure how bad that fact is...
    The incision looks good so far.  They hit Jarrad with a broad spectrum antibiotic because they aren't sure what the bacteria is.  Jarrad is hooked up to a wound vac which sucks the blood out so it won't pool like it did before.  It will even come home with us for hopefully just 2 weeks.  Home Health is going to come out and change it and check it (like we wanted them to the first time. . . )
    Jarrad looks pink and not gray.  He is ready to come home.  I am ready for him to come home and I feel like I will be a better person because I know that someone who knows what they are doing will be coming in to check on him. 

Happy Thanksgiving

   You want to know what I am most thankful for?  That it is over. 
    I tried.  I really tried.  I tried to be thankful for "in the moment things".  I made a turkey - and tried to be thankful that the butcher was kind enough to give me a Butterball at the generic price all because I asked him about thawing the generic one.  I made stuffing and tried to be thankful that Jarrad introduced me to it because it is AWESOME! I tried to be thankful that the kids had fun tearing up the bread for it.  I made gravy and tried to be thankful that it was the best gravy I ever made and that I am the only one in my little family that likes it so it is all mine!
     I tried to be thankful for people.  I tried to be thankful for my family - I have beautiful children. I have awesome parents and siblings.  I have some pretty adorable nieces and nephews.  I tried to be thankful for friends - had a girl's night out last night  - salted caramel martini's and laughter with some pretty awesome women. I tried to be thankful for my community - long distance friends, church.
   I tried to be thankful for things - a house, car, food.  
   And then I looked at Jarrad and try as I might, my thankfulness disappears like the frost did this morning because all I can do is worry. 
   Today, he spent the day in bed.   His incision is oozing blood and his pressure sore has some broken skin - just a top layer as if you had skinned your knuckles. Bad, And I thought it was getting better... He is shivering sometimes and his hip just looks nasty.  I don't know what I am doing wrong; I don't even know if what I am doing is right.  I don't know what to do.  It makes me cry and snappish. 
   I am just thankful that today is over and tomorrow, I can take him to a doctor and maybe they can give us some direction. 
   My worry is overwhelming me and I don't like the person that I am right now.  So I guess it is a good thing that I binge eat when I am stressed because I have finally found something I can truly be thankful for - the left overs.

Post Surgery #1

    Woo Hoo! We are home.  I am so tired of hospitals and everything that goes with it - ugh!   Ok.  So here is how it went.
    We got to the hospital. They took him back  and a little under 3 hours later, he was back.  I talked to the doctor.  It went something like this.
   "He is ok."
    Hmmm, ok?
   "There was a lot of blood." 
   Um, I knew that there would be - we were warned.
    "There was a lot of bone."
    Again, we know.
    "I was able to bring his leg up to 90 degrees and to lay it flat.  You can't really tell the difference between the good bone and the bad bone so we scrap off layers until we see (medical gibberish).  We scrap away the bone and add wax to stop/slow the bleeding.  There was a lot of bone.  The anesthesiologist kept his blood pressure low because that helps with the bleeding.  There was a lot of bone.  When he lost 2 units/liters, I decided we needed to stop.  The body holds 5 and I didn't want to go lower than that.  I want to avoid a transfusion.  There was a lot of bone - more than usual.  He is going to need a couple of months before we can do the other hip.  I am going to need a couple of months before I can do the other hip. There was a lot of bone." 
    And yes, he said "a lot of bone" a lot.
   So this is what I learned.  I called my BIL to ask how long it takes to restore the missing 2 units.  He was concerned as to why they didn't just do a transfusion.  This is what he told me (he is a nurse by the way) or rather what I understood.  They put fluid in but it dilutes the blood or the hemoglobin. Ok, now I get it.  I don't know how long it takes to get it "undiluted" but it is probably a month or so.  This is important as blood carries oxygen as well as all the other good stuff.  And because his blood is "thin", he will be very tired for a while until it gets "thick".  Hence, more red meat and leafy  greens and other things that will be good for him.
    But why not a blood transfusion?  Because your body will see it as "foreign" even if it is your blood type and this can lower your immune system.  As a paraplegic, Jarrad is more susceptible to things like pneumonia.  They wanted to avoid that because even though a small fever is good because it gets the antibodies revved up to fight off infection, you don't want your "forces" to be divided. 
    In summery,  the doctor did not get as much bone as he wanted off.  There is still a lot of bone left.  Usually, they want to bend the knee to the chest.  That did not happen.  If Jarrad wants to, he can go back and have another surgery to remove more bone.  We are going to wait and see.  There is the possibility that the HO can grow again.  In most cases, it doesn't

but it is always a possibility.  Jarrad is a little disappointed that more bone was not removed but the difference is amazing!  We are going to take it easy for 6 weeks while it heals but after that, his quality of life should be much improved. 
   You can see from this picture, the closer leg had surgery.  It now lays flat while the left leg is at an angle.
   The right leg is floppy.  We have gotten so used to the stiffness and now it moves.  Jarrad is going to have to figure out how to balance all over again and how to move but already he can tell a difference in how he sits - it feels better.