Thursday, February 28, 2013

At long last, part deux

Don't faint - I'm still here, still alive, still reading, but haven't posted much.  I thought by doing a post with "Part Une" in the title in early January, I could peer pressure myself into posting sooner that I have.  It's been almost 2 months, and while the scary and unexpected things about the holidays I alluded to in my last post have settled down, I just haven't felt like putting figurative pen to paper.  But I need to.

I think I overwhelmed myself by saying I'd post shortly about the other "big event" that shook up our family holiday gatherings (besides my FIL's passing, which I did write about) - though it didn't begin unfolding (quietly and seemingly innocently) until Christmas Eve.  That day, nor in the next few, I had no idea that odd things were brewing in my middle child, Stephen, and neither did he, though he did start noting some weird physical sensations to me.  Being a nurse, the vague symptoms sounded potentially concerning, but easily explained away by recent physical activity he'd engaged in.  Being a recovering catastrophizer, I kept telling myself to calm down and stop always going to a bad or worst case scenario.  But a few days in, it became clear something real was happening.

The day after Christmas, Steve said the bottoms of his feet felt numb and tingly.  Also that his calves were very painful, but we attributed it to the fact that he'd gone out a run a couple of miles in the freezing cold (and he doesn't run), just for exercise.  Concerning the numbness, I asked if it was really both feet, and he said yes.  A wisp of adrenalin puffed into my gut, because as a nurse, I know bilateral neurological stuff is significant.  But I reminded myself to not get crazy or worried over essentially nothing.  He didn't mention it again for a day or so, but then he told me that his finger tips were tingly and numb, and his arms ached.  "Both arms?"  Yep.  Shit, more bilateral symptomology.  More adrenalin.  More talking myself off the cliff.  Yet he could move everything fine.  "How are your legs and feet?"  His answer was, "Probably worse."  I told him I was going to make a doctor appointment for him the next day, and he told me to not be ridiculous.  HAH!

By now it was New Year's Eve, after 3 p.m., so I figured we'd deal with it, if necessary, on Wednesday, which was Jan. 2nd.  Well.  That night, he had friends over, which he later confessed was because he felt too weird and crappy to go anywhere.  I was asleep by 9:30 while hubby lay next to me and watched the various NYE's going ons on tv.  Tuesday morning I was out of the house by 6:30 to go to a 7 a.m. AA meeting and then breakfast with friends (New Year's Day), and when I walked into the house at 9:45, my husband called out that Steve's "medical condition" had gotten worse.  I flew into the den, and Stephen was sitting there looking entirely pissed off with Tom (hubby), and told me to disregard what "Dad just said".  I asked what was going on, and it turns out his face was feeling "wooden", his tongue was "thick" and he was having a hard time swallowing food.  His speech was even slightly slurry.

Into HIGH GEAR - I said we were going to the ER.  Stephen said no.  I said that I'd call 911, and he said for me to go ahead but that he wasn't going, and then I SCREAMED, "GET YOUR SHOES ON...WE'RE GOING NOW"... and off we went - me driving, Tom next to me telling me to slow down while Stephen reminded me I wasn't driving an ambulance.  I was terrified, even though Steve could walk, he was definitely having some kind of neurological event.  What it turned out to be had actually occurred to me a couple of days earlier, but is such a rare thing that I was sure my mind was being crazy.

He got taken back quickly, and at this point I will try to make a very long story less long by saying that he had a million tests.  All blood tests and CT scan of the head were normal.  And then a neurologist was called in, and that man will be my hero forever.  He did a full neurological exam on Stephen (with me present, since Steve said it was okay), checking reflexes, strength, asking countless detailed questions.  It was during this exam where I became the most scared, terrified really, because I could this doctor was sharp, good, and knew his stuff.  I knew this doctor would figure out what it was, and that was both terrifying and reassuring.

After he finished the exam, he told Steve that based on everything up to that point, he felt fairly confident that what Stephen had was Guillain Barre Syndrome.  This is a very rare condition that you can read a brief description of if you click the link.  Essentially it's an auto-immune response where the body begins attacking the nerves as the exit from the spinal cord.  Cause is unknown, but it often occurs after a respiratory infection or receiving a flu shot.  If you've ever gotten a flu shot, you've seen the condition listed in the consent form you sign prior to getting the vaccine.   I won't go into all the details of this, except to say that it's considered a medical emergency because it is a progressive paralysis that can (but does not in 70% of cases) actually cause a paralysis of the chest muscles that aid in breathing.  It can very in intensity and seriousness, and in worst cases, can actually (though rarely) cause death. 

After the doc told Steve what he thought his condition was, he said that the diagnosis was confirmed by a spinal tap and looking at the spinal fluid under a microscope.  The presence of protein in the fluid is the only way to definitively know for sure.  You can imagine that Stephen was thrilled to hear that, but was a champ for the procedure.  We had to wait a couple of hours for the result, and while we waited, Steve researched the condition on his phone, and his symptoms were essentially a textbook definition of the disease.  Fortunately this condition is treatable, and in the majority of cases, the patient recovers fully.

Turns out, if you hadn't guessed or aren't friends on Facebook, that Stephen did have GBS, and ended up spending 4 days in the hospital in ICU (because he had to be monitored during treatments and for possible chest involvement), for the condition.  It seemed that his symptoms had peaked by the time we got to the ER, because he never got worse.  During his time in the hospital, his facial involvement (recall his lips feeling wooden, face stiff, etc) made it hard for him to even use a straw because he couldn't seal his lips around it.  Crazy, huh? Yet he could always walk pretty well (though his legs also felt "wooden") and really never lost motor function.  Most of his symptoms were more on the sensory end of the nervous system - more what he felt and sensed, rather than how he moved. There is so much more about all this that I won't bore you with (probably too late for that!), but he did well in the hospital, got fantastic care, had lots of company, and tolerated the treatments well.  After discharge he ended up staying home for an extra 3 weeks before going back to working on his cousin's farm in Kentucky.

So this all happened while our daughter Jean and her boyfriend Cesar were here for the holidays.  Obviously it sort of changed a lot of our plans, but Jean and Cesar shifted gears and hung out with Steve in the hospital, and we still had a good time together.  We were all so thankful that Stephen seemed to have a mild case of this syndrome.  It all felt quite surreal, and while we were relieved that his diagnosis turned out to be something entirely treatable and one from which he will fully recover, it definitely was a very scary experience.  Stephen soldiered through well - Mom, not so much.  On the surface I kicked into competent nurse/mom mode, grateful, optimistic, and the family spokesperson.  Inside my tendency to catastrophize and be anxious got very triggered, and I'm still working on regrouping, almost 10 weeks later.

I talked to Stephen on Saturday, and he says he feels pretty good.  He still tires more easily - especially in his arms and legs, and he has the tingling fingers and soles of feet when he first wakes each day.  But after moving around a bit, he says he feels pretty normal.  We are so grateful that this happened while he was at home, rather than while he was at the farm.  The doc said we caught it earlier than a lot of folks do, and that will further ensure eventual full recovery.

I'm sorry for this long post.  Believe when I say it could be MUCH longer, but if I want to publish it before midnight, I have to keep it brief!  Or at least less than a novella.

My food/weight/eating is in about the same place it's been for many months.  I haven't gained, but I haven't lost.  Up and down between 5 pounds.  I'd like to say I'm ready to get this weight off once and for all, and of course I am.  But I don't seem to ready to do what it's going to take, which is get consistent about it.

Writing all this has been exhausting to my emotional reserves - so I'm not even going to proof it.  I intend, hope, and plan to get back to more frequent blogging, but I've said that before.  But at least I've posted once a month, so far, in 2013! 


  1. My gosh - what a scary thing to wonder it took you a while to process this! Thank goodness you could see the symptoms for what they were, and I'm so glad to hear he's recovering well.

  2. I did see your FB posts and I was praying for all of you. I'm so glad it turned out well.

  3. How incredibly scary. I had my youngest get Bell's palsy at age 4 and thought she was having a stroke, so I can relate a tiny bit to what it must have felt like as you realized it was all over his body. So glad to hear from you. Maybe it was good for you to write it all out and sort of reflect.

  4. Oh my, Leslie. I'm glad to hear that he's doing well. What an experience - I'm certainly glad you stood your ground re: ER trip. It's good to hear from you :-)

  5. Geez! I would have been an aboslute wreck the whole time! You did great Leslie. So glad he's o.k.

  6. Hi Leslie! Wow, how scary for your family! This reminds me of when my youngest daughter got a tiny cut on her foot that got infected that landed her in the hospital, and the doctors couldn't figure out what it was, as she got sicker and sicker. They talked to me about a possible leg amputation and tested her for heart damage. It turns out that she had something like scarlet fever. But she also turned out okay. Thank goodness for modern medicine!

    :-) Marion

  7. Yikes! Being a mommy is hard work! So glad to hear from you and I'm glad your boy is recovering well. It's hard to focus on yourself when you have other things like this going on. *hugs*

  8. My goodness, Leslie! What a scary time for all of your family. I'm so glad that your son is on the mend, but GBS is serious. I'm so glad that your nurse/mom skills kicked into high gear!!

    Thanks for stopping by my blog. It was good to hear from you. I also had a dry spell in terms of blogging last year. I seem to do better when I don't write about my weight so frequently, so I'm now writing posts about other things that cross my mind.

    My best to you and family, and I'm so glad that your son is recovering. Take care...

  9. Wow! I am so sorry you guys went through that! Terribly scary stuff and I am so glad you insisted he go get it checked out. It is awful when you can't fix what's hurting your child, even when they're grown. Prayers for you and your family and I am glad the outcome looks like it will be good.

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  11. Hey, you. I'm still alive and kicking right along with you:)

  12. Thank God you have your medical background and the sanity of all your years sober to be taken seriously by your family so that he was able to get help in a timely manner. What a blessing that you are a nurse - and an attentive mom.

    Keep coming back, Leslie.

  13. Thanks for the detailed post Leslie - I follow you on Facebook, so I knew kind of what was going on. Thank goodness you guys did catch it when you did!

  14. Oh my gosh I felt emotional just reading that! Glad he is doing much better and I hope you are doing okay too :)