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Tuesday, July 24, 2012

the saga continues

...all the events I described in my last post happened about a month ago so let me catch you up with the rest.  After the second surgery, hubs spent one nite in the hospital & then they sent him home.  With 2 sets of staples in head & a 4" long incision down the back of his neck.  My hubs is very tall - 6'4" - and with a newly shaven head he did remind me a little of Frankenstein.  don't ever tell him I said that!

This has been a very long, messy year for us so far.  Let me recap:  in February, my daughter had a procedure that did not go well & she ended up on a feeding tube for several months.  VERY stressful!  I had my own extensive surgery on May 1.  VERY stressful!  My daughter had just gotten off the feeding tube & I was starting to recover when the downward spiral for the hubs began.  VERY stressful.  But wait!  There's more!  Right around my hubs' first surgery, my daughter had an appt to see a pediatric orthopedic surgeon.  Her scoliosis has gotten very bad (up to 20% curvature, docs say don't worry; 20-40% curvature, docs say watch but don't do anything; beyond 40% curvature, docs say its bad and surgery is likely. my daughter has a curvature of 60%.  seriously).    The curvature is starting to impact her internal organs and it only gets worse from here.  Even tho' she's just about to turn 10, she's already had several surgeries but this will be the most extensive.  the most scary.  Basically, they will cut her open from neck to butt crack in order to put in rods, screws & wires to fuse her spine as straight as possible.  They may even fuse her hips as well.  Imagine the recovery process from that!   Knowing how long it took to get this appt, I left my hubs in one hospital and took my daughter over to Children's Hospital.  I was trying to mentally prepare myself for the likelihood that I had surgery in May, hubs having multiple surgeries in June & my daughter would have a huge surgery in July.  trying & failing to prepare for that possibility.  VERY stressful!!!  Thankfully, doc said that yes, she will definitely need fusion surgery but her scoliosis seems to have stabilized and surgery is not imminent.  HUGE sigh of relief.  I know its coming, but tomorrow is another day, Scarlett.  I'll worry about that later.

By the time he got home, I was spent....but I had to return to work (hello, sole breadwinner & provider of health insurance!) plus I had to now figure out to care for our daughter.  For better or worse, my little family is rather fragile.  brittle.  We only work as a family unit if both my husband & I are shouldering our respective responsibilities.  I pay the bills & he cares for our daughter.  But in his condition, he is not able to carry his weight.  I  know myself well enough to know that I can't cover day-to-day care for the kid and work and travel and stay sane for any period of time.

We have no family in Denver so I did something very hard - I called my sister-in-law in Kansas City & asked if she could take my daughter for a few weeks.  Nerve wracking for both of us.  She's never watched the kid for more than a few hours.  However, she is a nurse & is working as a school nurse right now which means she has the summer off.  For me, I'm making the decision to split up my family.  I have to send my daughter away because I don't trust my husband not to half-ass his recovery.  I believe that if she was around, he would try to do too much, too soon and likely do more damage or prolong his recovery.  He can't do that - he needs to get back to 100% ASAP so we can move onto my daughter's spinal fusion.  After much discussion (and annoying drama with his extended family), my daughter is sent to KC.  As of right now, I haven't seen her in about a month.  I can't describe how deep that cuts.

After the second surgery, he's home for a few days before I have to get back to work & back on the road.  Sales meeting in London I have to attend.  Tired just reading this?  I was a mess & operating on sheer stubbornness and adrenaline by this point.  Traveling is distracting - in good ways & bad.  As crazy as it was to hop a plane to the UK at that moment, it was good for me in a way.  I got some distance (literally) and could take a deep breath for the next hurdle: recovery.

Two weeks after the second surgery, he had a follow-up with the surgeon.  A CT scan soon after the first surgery still showed blood on his brain & he was still having headaches.  It was feeling like we had been through a lot but it hadn't worked.  fuck!  Doc said its now a waiting game - it takes time for the blood to dissipate & of course, he's still having headaches....they just cut open his neck & head. duh.  those incisions need to heal before we'll know if the leaking has stopped.

Truth is is that I am not a particularly nurturing person & we've had so much drama this year that my reserves are all gone.  I know he will require a long recovery but I don't have it in me to provide it.  Also, his mom is too sickly to come out to Denver because of the altitude.  Through all of this, she's been back in her tiny Kansas town freaking out (his dad came out for a few days to help but ended up staying over three weeks.  in my 900 sq ft house.  with one bathroom.  VERY stressful!!!!).  So, I totally guilted him into going back home so his mother could spoil him.  He wasn't keen on going.  I didn't give him a choice.

Right now, he's been back in Kansas for about 2 weeks and hanging out with the kid in his hometown.  He's feeling better and hasn't had any headaches for a few days.  He is behaving himself and letting other people care for the kid.  Next step is to ramp up his activity bit by bit and see how he reacts.  Keep your fingers crossed that he continues to improve.

I'm in Denver now. I was gone on a business trip when family friends with a private jet came to take him back to Kansas.  When I got home to an empty house, I collapsed on the couch.  utterly spent.  an empty shell.  This has been a such an emotionally difficult time for me.....coming face to face with some of my worst fears.  While he was in ICU, I asked him what he would take away from this too-near brush with death.  He just kinda blinked at me with that "what'cha talkin' 'bout, Willis?" look.  Not a deep thinker or particularly reflective man so I doubt he'll take much from this experience.  But wouldn't you know, I'm having trouble processing it all.......

However, that is the subject of the next post....


Monday, July 23, 2012

Serious, scary shit

Hello all,
I've posted pretty regularly in the year and half since I got the band and then -poof!- disappear for over a month.  Miss me?  Worry about me?  Well, you should worry - there's been some scary shit going on in my life.  My husband nearly died.  no joke. no laughing matter. no shit.

I'm sure this will take a couple posts to get fully caught up so lets get it going.....

As I mentioned in an earlier post, my husband has been having headaches since about Easter.  These headaches are positional which means they are a little better when he's laying down & much worse when he's upright.  Turns out these headaches are caused by leaking spinal fluid.  Over the course of a few months, we got kicked from specialist to specialist, test to test & treatment to treatment.  Then things went to bad to worse to dire in just a few short days.

He was leaking so much fluid that his brain was scraping around inside his skull and it caused a subdural hematoma - or bleeding in the brain.   He was already in the hospital due to dehydration & for pain management and was scheduled for surgery to plug up the holes.  However, the afternoon before surgery, the doc came by on rounds and felt my husband was "sicker than he should be for this issue" and ordered a CT scan out of curiosity.  Thank goodness for his suspicions!   The operating plan quickly changed from plug the leak to drilling holes in skull to relieve the pressure and flush out the blood.  That morning before surgery, I could not rouse my husband at all.  Shaking him, yelling at him, slapping his face - none of it produced any response.  I do truly believe that if he hadn't already been in the hospital and that if the surgeon hadn't been suspicious, then he would have likely slipped into a coma that day and I'm not sure we would have gotten him back.  Also, its difficult to think what might have happened if they'd gone ahead and done the original procedure to open up his spine with an undetected brain bleed. <<insert panic here>>

That morning was probably the scariest of my life....and considering everything I've been through with my daughter that is saying a lot!  The anesthesiologist mentioned that this was the most unusual case he'd ever seen.  great.  As they were wheeling him off the operating room, the pre-op nurses started giving us hugs & I could the tears in their eyes.  wtf? <<insert panic here>>  After seeing that, I walked about 10 steps before completely melting down and falling to pieces.  I am never a mess & I rarely cry but in that moment I was a bawling disaster.  <<insert panic here>>

After brain surgery, he spent a few days in ICU where he was markedly better - although he did lose about 5 days. doesn't remember them at all but he was speaking & eating again.  One week after the dealing with the blood in his brain, he went back under so the docs could try to plug up the leaks.  Films had shown the leaks were really high up in his neck at C2-C3.  Doc opened him up there (yikes!) but couldn't actually find any holes or source of the leaks.  fuck. He went ahead & pumped him full of superglue as a shot in the dark.  Now we wait and see if that did any good...

gotta run but I'll post more tomorrow.