Tuesday, November 19, 2013

Just when I thought...

You know, sometimes life rolls along smoothly. And then sometimes you just can't catch your breath to get back on your feet.
Our daughter decided last night that we are calling this year, year of the plagues!
It has been like that.
Yesterday, as I was biking our youngest to school, I could hear a weird cough and wheezing going on. I turned her around and we went back home since she said she had had a hard time breathing and her chest was tight when she was running.
To the Dr we go. Yep, exercise induce asthma.
We spent the morning at the Dr office then picking up scripts and stuff to get her healthy again.

Then, last evening, we found a little worm on our cat. After some research, it looks like we get to take the cats to the vet today too.
I so didn't need this.
Our other daughter is congested, but seriously, no one is allowed to get sick.
I can't take it. Really I can't!

I swear, we are having the biggest New Year's Eve party ever this year. So tired of the year of the plagues. That is... If we are even still around by that point.

Sunday, November 17, 2013

The 8 Day MRI saga

 A week to remember, that I hope we forget. We went to the hospital on Wednesday for the MRI under sedation, and when we got there, we were told that they couldn't do it if my husband was having seizures.  (But they said they weren't seizures since he wasn't blacking out). After much frustration, they told us that they were speaking directly to the doctor and that he directed us to the Emergency Room since he was on call there, and could see us there, and that they could do the MRI there.

Unfortunately, they were very busy. My husband was put on a stretcher, had a bunch of calming drugs pumped into him and left in the hallway for 10 hours. Finally, after 11 hours, he was admitted into the hospital for "involuntary contractions" which weren't technically seizures, but pretty darn well looked just like them.  I timed them.  He had 19 in 1 hr. 10 minutes.  It was horrible to see.  Fortunately, I'd made arrangements for our kids after school with a friend and she just took care of everything they needed.  What a blessing!

Jeff got situated in his room for the evening and I headed home for a few hours of sleep.  Picked the girls up and got them off to school, headed back to the hospital.
I spent the day there as my husband met with many different Dr. aides, a few doctors, and had lots of tests done. After the EEG, they moved him from the 4th floor to the 9th floor, to a much nicer, spacious room.  A friend picked up my girls, and another friend picked them up and brought them AND dinner to us in the hospital.
I took the girls home when a friend came to visit my husband, and went for a quick bike ride in the morning - except that it was a really slow ride - one of my slowest ever!  The girls went to school, and I packed a bag to stay the night when my husband called and said that he'd had a horrible night, an invasion of his privacy by a nurse that was very traumatic, and that he had wished I'd stayed.

We had a great nurse, and several friends stopped in to say hello, one even brought me lunch (she's a keeper).  The Dr. group was pretty cruddy.  In the ER, we'd asked that they contact our Dr.  They never did.  They asked if we minded if they 'consulted' along with our Dr.  We thought they would put their heads together and confer.  Nothing even close to it.  They completely erased him from everything and decided to take their own direction without consulting us or him.  At one point, the neurologist was ready to send my husband home - without the MRI that he'd been waiting for!  We threw a bit of a stink, and finally the Dr. came it to speak with us (we'd never even met her - she didn't seem to have time to meet the patients, just to send them home after reading someone else's opinion and impressions of them...grrrr)

My husband went for 24 without sleep due to some medication, and started to seize everytime his body tried to sleep.  Finally, late Friday night, they came and got him and he had enough drugs in him and was tired enough that he was able to make it through the MRI without seizing.

On Saturday, after waiting for an eon. The neurologist's assistant told us that they hadn't seen anything in the MRI. As far as they could tell, everything looked great.  So, we waited for another 5 hours for the discharge Dr. to get there to sign discharge papers.  
What we know: nada
We have a couple of referrals for some doctors - including a neurologist who focuses on movement and seizures.  Guess I'll start calling tomorrow and working with our insurance to make sure everything is covered.  
We are so grateful to all of our Florida family, church, and neighbors for their support and love.  We've had dinners brought in, cookies brought in, visits, phone calls, messages and so much love.  There aren't words to describe.  
Where this will take us, we don't know, but we know all things are in the Lord's hands, and we trust that things will turn out according to His will and time frame and pray for the faith to make it through.  

Tuesday, November 12, 2013

Drama Drama Drama (pronounced with a Irish accent)

Really.  It never ends.
We've had some really rough days lately.  6 to be exact.
My husband had an EEG last week for his tremors and saw a neurologist.  The neurologist said he thinks my husband has temporal lobe epilepsy.  WHAT?
They used strobe lights as part of the EEG, and somehow triggered something nasty inside of my husband.  Now we are fiendishly trying to find the off switch to put the beast back to sleep.
Since Thursday pm, he's been in a state of frequent seizures.  As in, hours at a time of waves of seizing - not blacking out, but convulsing out of control.  Can't walk, can't talk.  At least it isn't very painful yet.  Ugly.
Not what I voted for.

On Thursday the Dr. office was supposed to set up an MRI.  Monday rolled around and we still hadn't heard back from them, so I called to see if it had been set up (nope) and I set it up.  The Dr. office said they'd tried for 3 days but hadn't been able to due to insurance issues.  Whatever.  I distinctly told them South, the 3T machine, with epilepsy panel.  Ok they said and set it up.

I called the Dr. office yesterday am first thing to tell them that my husband's previous tremor a couple of times a week had morphed into an angry blood sucking monster.  They basically gave me the equivalent of 'that's nice dear, and patted my hand' and told me after the MRI, they could see when the Dr. could see him.

I called this morning to ask about sedation for my husband since he is seizing so badly (went through it again with them) during the MRI.  They couldn't recommend that I gave him an anti anxiety medication he had on hand from his first hospital experience when this all started 6 months ago.  And they didn't really want to mess with trying to set up a sedation team for the MRI.

We showed up 30 min early as they had asked.  My husband started convulsing, so they led him to someplace to lie down and were going to get ready to do it.  Then somehow, they looked at the script and came and told me that the procedure had to be done at South, because they didn't have the 3T or epilepsy protocol (yeah - the one I'd requested).  Yeah, what a pain.  They tried to fix it but after two hours, couldn't.  My husband did score some Xanax though.  At least that was something since he was freaking out.  They also informed us there was no way that he could have an MRI in his current shaking condition.
They called the Dr. office, and they recommended that we go to the ER.  What a mess.

Eventually we left, and tomorrow we will try over WITH a sedation team (he's going under), and at the correct facility, with the correct diagnostic panel.

What a ride.  Hoping against all hope that we can find some answers very soon.

Friday, November 8, 2013

Good news

Lots and lots going on these days.  Trying to keep up.
On Tuesday, I missed going to my book club even though I had fiendishly read to finish the book in time. However, as part of book club, we usually share our good news.  I'd been thinking through the day (Tuesday) about what I could possibly share.  We are very blessed, but I couldn't think of any good news that seemed share worthy.

I finally found my good news and inspiration today:
While at the Dr. this week, in an answer to our prayers, the Dr. actually saw first hand some of the health issues my husband has been having, and was inspired to go in a different direction than he'd been headed.  With his help, we were able to get in to see another Dr. and will hopefully have some definitive answers soon.  If you didn't know - 2013 has been the year of bad luck health problems in our home. I won't spell it out, but it hasn't been pretty.

Our daughter just texted me to let us know that her audition last night (that she thought she had tanked), wasn't so bad, and she will be able to participate in the all county band.  Not 100% sure what it is, but she's excited about it.  I'm sure it means more schedule jiggling and running around for me, but I think that comes in my job title - or something like that.  

Finally, our washing machine broke.  My in-laws have been in town, and so my father in law was able to unhook the old one, and (I only assisted a little - he's pretty handy) install the one we've been storing in the garage for the past year, for such a day as this.
Hooray - soon my children may have clean clothing to wear!  And the mountain of laundry in my bathroom will be conquered. No. I won't post pictures.

We did celebrate the day of the dead also.  That's an accomplishment - I've been trying to find the energy after Halloween for that one.  I found some fun pumpkin recipes and we had a pumpkin palooza dia de los muertos.