Thursday, October 2, 2014

Set Backs Suck!

This has been another eye opening week.  This week we had one of Kevin's doctors sign a form that basically stated that Kevin has a catastrophic illness or injury that would result in his death within 12 month if he did not have continual medical care.  

Just wrapping our heads around that whole thing has really taken a tole on all of us.  It seems like Kevin has had a rough couple of weeks.  He has been having these, for lack of a better term, tremors.  The left side of his body will just shake.  When this started Kevin called his surgeon immediately.  They ordered a stat CT Scan (why a CT Scan verses an MRI is beyond me).  Kevin called the doctor on Friday.  The doctor actually had a day off and his medical assistant called him right away.  They got the CT Scan approved by the insurance company and we got a call on Saturday from the imaging center to schedule the test.  Kevin had another appointment with his pain specialist on Monday, the CT Scan on Tuesday.  (They tried to get him in on Saturday, but we missed their call.)  Then he saw the surgeon today.  

The surgeon said the CT Scan looked good.  Yet, when they did a physical exam on Kevin he could not control the constant twitching of his left leg.  The doctor tried to get Kevin to lift his left leg and he couldn't.  He just twitched.  The doctor was totally beside himself and said he was not sure what was going on.  He told Kevin he wanted him to see a Neurologist.  The surgeon basically, in not so many words, told Kevin he wanted him to see this Neurologist in Scottsdale that he totally trusts.  He said this doctor attended Harvard, and just happens to be a Professor at Boston College.  He said he knows this doctor will get to the bottom of things.  He basically told Kevin that he didn't think the Neurologists in the local area would get to the bottom of this as quickly as this guy in Scottsdale.  I mean doctor in Scottsdale.  (Guy!  Who calls a man who went to school for almost half his life a guy?  Oops!  Sorry about that.)  Which I totally agree.  They are a little slow and we want answers as fast as possible.  So, we are going to take the surgeon's advice and see the doctor in Scottsdale, even though the drive will not be fun for Kevin.  The surgeon told Kevin to discontinue all physical therapy, stay in bed, and see this specialist as soon as he can get you in.  So, now the waiting game begins. 

Kevin scheduled an appointment with the Neurologist.  Kevin said the appointment scheduler told him that they usually research the referrals before they even schedule but since he was a patient of Dr. Song's they just scheduled the appointment.  The appointment scheduler said as soon as they get the surgeons notes on Kevin they would be calling to bump up the appointment to a sooner date.  As it is, the appointment is scheduled for November sometime.  But the appointment scheduler said most likely we will be seeing you a lot sooner.  She felt Kevin would be worked in at another time for sure.  

Kevin has been a mess through all of this.  He is scared to death, which I do not blame him.  At first he was scared they were going to do surgery #5.  Now he is scared of the unknown again.  For the past several days I have been catching him in bed and in tears.  It's been hard seeing my husband this way.  I did point out to Kevin this afternoon that there was some good that came out of this visit.  He will not be having surgery #5!!!  That is a wonderful thing!!  I reassured Kevin as much as I could.  I've been able to stay positive through this whole thing until it all hit me yesterday.  

Kevin had a really rough time the night before.  He shook so much that he bounced himself right out of the bed to the floor.  He had Kyle pick him up and get him to bed, but he was in so much pain and he was literally gritting his teeth all day.  Keep in mind, Kevin is on enough pain medication to drop a couple of horses.  He takes two kinds of Oxy, one every 4 hours, the other every 12.  Then he takes Soma or Valium on top of that.  PLUS...Gabapentin on top of that.  Gabapentin alone would drop a horse.  Then when you add the other three medications on top of that.  Well, I can't even believe Kevin can lift his head from the pillow each day.  It's nuts!!!  So much medicine.  For Kevin to be in pain after he takes all of this is really bad.  Even the surgeon could see it in Kevin's face and simply by taking his blood pressure that his pain level was through the roof.  Kevin normally has excellent blood pressure except when the pain sky rockets.  

Yesterday was a bad day for me.  I walked out of Kevin's room a complete mess.  I was crying.  I did my best to leave the room without Kevin seeing me.  (The last thing he needs is to see me not handling this well.)  I walked out and told the boys I needed to get out of the house right away.  Curtis got in the car with me and we headed to the grocery store.  We needed a couple things anyway.  I also don't want my children seeing me a mess like this either, but I couldn't control it.  I have held it together through this last surgery, through his recovery, through those moments when Kevin would get angry and/or down.  I have been very proud of myself for not losing it.  Until yesterday.  It was a number of things that did it for me.  

We had one of Kevin's doctors sign a form that basically stated Kevin had a catastrophic illness or injury.  This form was something I needed.  It's not everyday that we need a form like this filled out, and it certainly is not the easiest.  I guess I never thought the doctor's would sign something like this.  I guess I was in denial.  Well, without hesitation, the doctor signed the form.  I was beside myself when I sat there in the doctor's office and he just read the form, didn't ask any questions, and just signed it.  That is when it all hit me!  That is when I finally realized exactly what we are dealing with here.  

Honestly, until that very moment I never thought this whole thing could be the reason I could lose my husband. Sure, I thought it.  Sure I knew it.  But until you actually see it in print, it still is not a reality.  So, after our afternoon visit with this doctor the rest of Monday was pretty much a blur for me.  In fact, the rest of the week has been that way.  I'll be honest with you...I am seeing things a whole lot different now and I am really scared!  I hate to admit that, but I am officially scared.  I tried and tried to be strong and have no fear.  I really did.  To be honest, I still believe that everything is going to work out.  But in the back of my mind, this is taking over and I don't like it.  I was so proud of myself for being so strong and maintaining a positive front for Kevin.  Now this!  So frustrating.  A set back.  

I told my son Curtis that I think this is why I gravitate to weddings and things like this so much.  Weddings are happy occasions.  I never really understood my obsession with weddings until today.  Now I get it.  I guess I needed to be around some happy things.  Funny how that works out, isn't it?

Let's talk about something else.  My niece had a baby today.  This is her first.  A little girl!  She is a cutie.  I'll post pictures later, after I get the okay from Mom and Dad.  :)
Congratulations Amanda and Wade Johnson!!!  


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