my hubby’s neuro-nightmare

Hello, friends!

I wanted to post a blog today about what my little family has been going through for the last month or so.

I’m overwhelmed at the thought of typing it all out, but I also don’t want to be one of those bloggers that acts like it’s always sunshine and rainbows and easy.  Cuz it’s not.

I could keep this blog to cute outfits and recipes and updates on my little pumpkin, but that’s just not my reality right now, and I never set off to make a blog that was anything but genuine.  So today, I’m going to share what’s been going on in our life and what my reality has been.  Let me lead off by saying that this is obviously from my perspective so it’s going to sound a little me-centered, but I can only explain what’s been going on from my perspective and what I’ve been feeling and thinking.

Here is my reality (vs. the outfits/recipes/Isla posts you usually see):  first and foremost, I have been caring for my sick hubby who has been unable to be unsupervised for the last few weeks due to a brain infection.  And as for cute outfits and food – I’ve been running around in yoga pants most of the time lately (thankful to grab a shower at some point in the afternoon), cooking about half as much as usual, and chasing after my super active little Tasmanian devil – all whilst trying to keep everything exactly as it always is around our house to keep my (literally, not jokingly) OCD husband from stressing about one more thing.  <–longest sentence ever.  OH.  And since my husband is obsessive compulsive, he gets something in his head and until it’s off his plate, he thinks about it constantly… so what has he gotten in his head since he’s been home almost 24 hours a day for weeks?  Me starting (and completing) Isla’s playroom (that was supposed to be my fall project).  This sounds like the silliest of things to be concerning ourselves with at this point, but it was driving him insane, so at any point over the last couple of weeks that I had a moment of free time, I was working to get that done so it was off his mind and one less thing for him to be worrying about getting done around here.  Again, I know how needless it sounds to be working on that, but it was something to try and take off his (mental) plate and I felt like one of my main jobs was to help him relax and if it took that to do it, so be it (insert eye roll :)).

So anyway, these last few weeks have been exhausting.  Like get to bed at the end of the longest days and your body starts falling asleep before your mind does kind of days.  This isn’t a boo hoo, poor me thing… it’s an honest moment of saying I’ve been burning the candle at both ends and have luckily had people to help and support me in the moments I’ve needed it the most.  I guess I should explain what happened…

A month ago, Eric started having some dizzy spells and bad head and neck aches for a few days.  He didn’t feel quite right but nothing was so alarming that we thought he should go to the doctor immediately, so he scheduled an appointment for the following week.  That weekend, he had some weird “episodes” start happening.  He lost feeling on the entire right side of his body at one point, but then it came back completely after about 15 minutes.  He then had some mental confusion and couldn’t remember or recall things that were easy to recall, but then seemed fine.  Then headaches started, that then led to migraines (which he’s never had in his life) and he was in excruciating pain.  The first time we went to the ER, he was sent home with a clean bill of health and just told he was having migraines and needed a muscle relaxer for his neck.  He seemed fine.  He continued to have headaches, but nothing crazy.  The next day was when sh*t really hit the fan.  First the numbness started, then slurred speech, then confusion, then lack of recall.  He was getting worse by the minute.

It was crazy because he had a clean CT scan, blood work, and EKG the day before – so I didn’t know what to do!  After calling my (doctor) uncle Rick, he told me I needed to get Eric to the emergency room immediately and he needed to see a neurologist, get an MRI at the very least, and be admitted.  Everything moved so fast but I remember him saying, “Tess.  Do you have someone to care for Isla?  Is there a neighbor or someone that could take her?  You need to get someone to care for Isla right now and get him to the hospital immediately.  He could be having a stroke.”  Needless to say, I was terrified.  Why hadn’t I taken him sooner?!  I thought it was like the few days before and it’d just pass.  Had I neglected him?  Eric insisted he wasn’t going to the hospital and he just needed to go to sleep (which was what I could gather from piecing together his sentences), but after noticing him worsening and talking to my uncle, I knew this wasn’t ok and he needed more medical attention.

The long and the short of it is that he just got worse and worse.  By the time we got to the hospital (which was only a matter of about 15 minutes thanks to great friends that took Isla in for the night), I realized that Eric walked in with only one shoe and didn’t even know it.  The nurses started asking him questions like what my name was, who the president was, where we were, his daughter’s name… He knew none of the answers.  He didn’t know his birthday, his last name – it was so scary.  He was kind of laughing about it and smiling and in good spirits, which was my only solace for that moment.  I realized that he was saying “yeah” as an answer to everything and had to then explain that for the next 12 hours to every doctor and nurse because they’d ask if he was feeling better and he’d go, “yeah” (which obviously gave them hope).  But then if you asked if he was in a ton of pain, he’d have the same response.  He couldn’t say no and couldn’t formulate full sentences.  Because at the time that we took him in, he had full motor functions and nothing showed up on the new CT scan, the ER doctor first tried to tell me it was a migraine and they were going to give him some pain medication and send him home.  I told them (and only had the gumption to do so because of talking to my uncle) that I was NOT taking him home without him seeing a neurologist and getting an MRI.  I swear, they acted like I was just being a pain and they’d seen it all before and he just had a bad migraine.

Thankfully, a neurologist eventually saw him (via a robot from a different hospital, no joke) and he failed the neuro exam pretty quickly.  So much time was passing but they finally got him the MRI.  During it, the ER doctor came and got me and had me get on the phone with the neurologist who was viewing it as they were doing it.  I had a feeling it wasn’t great when I wanted to stand for the phone call and she said, “no you’re going to need to sit down for this call.”

They told me that they saw (what they believed to be) a blockage in his brain and they couldn’t give him medicine to clear the blockage (stop a potential stroke) because too many hours had passed.  They needed to do an angioplasty through his groin to see what was going on and clear any blockages and try and prevent a stroke or another stroke if he’d already had one.  At some points, they told me they didn’t know the damage and if he’d ever go back to normal.  (I said “long and the short of it,” so you can imagine how long the long version is).

He was going to be air lifted to the hospital in Chicago but the air conditions weren’t good enough so we had to go via ambulance an hour away for him to have the procedure done.  Talk about the longest hour of my life.  Originally, I thought that childbirth was the longest, but I at least knew something wonderful was going to come out of that… sitting in that ambulance not knowing if the situation was dire or if my husband was just rapidly declining behind me was sickening.

Once we got to the hospital, he actually seemed to have mild improvement.  They did another CT scan and still felt the angioplasty was necessary.  It was a fairly quick procedure and they found that there were no discernible blockages (so no stroke), so either there weren’t any or they’d already cleared themselves.  So… WHAT WAS WRONG WITH HIM IF IT WASN’T THIS?!  That’s just my inner dialogue yelling.  They didn’t know.  They said they would be running more tests to try and see what was happening.

The next day is a real blur because I never slept and was running on adrenaline and lattes (which I never drink so I was oscillating between slurry tiredness myself and jittery “I can take on the world” moments). * He was in and out a lot because they had to sedate him at one point because of a bladder situation – I won’t get into the details, but let me just tell you, my husband is one STRONG fella.  I’ve always known him to be really strong, but he like Hulked out and had to have 8 nurses and doctors restraining him (with sedation) at one point.  During this time, I saw that Eric seemed to be no better with his cognition and he was forgetting what you’d tell him within seconds of explaining something to him.  It was then hard to do exams on him because he was SO tired/sedated.  The doctors did an EEG to monitor his brain activity and see if he was having seizures, a lumbar puncture to check his white blood cell count in his brain, and a different kind of MRI (with contrast) to rule out tumors and check inflammation etc.

What they found over the course of the next few days in the neurological ICU was inflammation of the brain and a ridiculously high white blood cell count (coupled with his really bad constant headache).  They diagnosed him with a really rare disease called HANDL syndrome and viral encephalitis (basically your brain has a viral infection).  Basically there is no cure or treatment for it, all you can do is take it easy and hope you don’t have these “episodes” again.  They can never happen again or they can happen for the rest of your life.  They told us the next 6 weeks would be critical and for him to take it easy.  They released him with no medication and told him to just take tylenol when headaches come on.

I think we were just so happy to have some kind of diagnosis and answers (and Eric seeming to feel a lot better) that we just accepted that this was our new normal.

Once home though, Eric had more episodes over the course of the next few days, and we realized we couldn’t sustain this without getting at least another opinion.

After his 4th (and worst) episode in as many days, and one that left him completely numb on the right side of his body for almost two hours, slurred mixed up speech, migraine, and confusion, we went to a new neurologist.  This neurologist said that she believed he had viral meningitis/encephalitis (which they did say he had when he was hospitalized) and it was leading him to have a cycle of something called “complicated migraines.”  These migraines can lead you to have stroke-like symptoms, even temporary paralysis.  She gave him different medications to kick the cycle out of his system but gave him a lot of restrictions in the meantime.  Because of how dangerous the temporary numbness/paralysis/confusion could potentially be, she said he was not to be unsupervised for the next two weeks (and not allowed to drive and have a restricted diet).  And that I had to monitor his symptoms and severity of them and not to rush him to the emergency room unless they persisted past 2-3 hours.  Seeing the love of your life being in such excruciating pain or seeming to be having a stroke and being told to wait and see if he gets worse is a very helpless feeling.  You don’t want to be an alarmist, but you don’t want to be neglectful if it’s something different.

The next week was really tough because he started having migraines that left him in crippling, screaming pain and laid out for 24 hours at a time sometimes.   The medicine helped but couldn’t prohibit him from having these migraines come on.  Additional medication was added and that did seem to help.  It was also tough because I couldn’t leave him for even the smallest of errands (those mindless ones like picking up a gallon of milk for your baby when you need it), unless he was supervised.  I am so grateful to the friends and family that helped us during these last few weeks.  Dinners were brought/sent, errands were run, Eric’s parents and brother and our future SIL came here and took care of Isla so that I could run around and clean or do laundry or whatever.  (Having a 13/14 month old and taking care of a sick hubby and trying to get anything done is nearly impossible, I learned :)).

What I also learned is to be willing to count on others.  I’m an incredibly proud person and always think I can do everything myself.  So not only will I not ask for help, I will usually refuse it even if I need it 🙁  I realized, very quickly, that I needed to just say yes and accept the help and I’m so glad I did.  We have had an outpouring of love and support and I am eternally grateful for all of the thoughts and prayers.

Eric is on the mend now but it’s really up and down.  He has some good days/hours but seems to continue to have a lot of hard/painful times too.  We got out of the house for some appetizers for an hour the other night, and he was laid out the rest of the night and up sick throughout the night.  It’s been kind of an uphill battle for my babe.. but it seems like every day he is getting even just a tiny bit better.  He was finally cleared to be unsupervised and drive yesterday, but hasn’t been feeling well enough to do so today.  He had some medications added and we are hoping they will start kicking in soon.  We have complete faith that Eric will get back to himself completely and have a full recovery and that one day, this will all be a distant memory.  But for now, we are just in one of those crazy rough patches that feels kind of endless, and is incredibly frustrating for such an active guy like my guy.  He’s in pretty much constant pain of some sort but the doctor is hopeful that this is just a part of his illness and that he’s on the upswing.  If you could keep him in your thoughts and prayers, we’d really appreciate it.

This entire experience has brought so many emotions to me.  It’s been very humbling and also brought a great deal of awareness to me.  Just to have him home with me now feels like a miracle.  Him remembering my name is a miracle.  Him being able to pick Isla up is a miracle.  I feel like I’ve taken so many little things for granted and I am trying to take it all in and appreciate it now.  I can’t explain to you the vast array of emotions of the past few weeks – but when he was in the hospital, all I could think was, “he has to get better. he has to be ok… he is our everything.  He is our EVERYTHING.”  I won’t keep divulging, as I’d probably start sobbing.  But this man of mine is our everything, and we are so grateful he is home and on the mend.

So that’s what the last month or so has looked like, and it looks like it’s going to be a bit of a road to full recovery, but we hope that we have been through the worst of it.

I love blogging and sharing tips with any of you all out there reading this and hope to get back to it more soon.  For now, I’m taking care of my brood and taking it easy when I can.

I’ll be back though <3

Thank you for reading and for the love and support!

 

* Just wanted to give a little shoutout to my family that drove up from hours away first thing in the morning to get Isla from her first sleepover and take care of her for days so that it wasn’t even a second thought for me.  I was able to focus on my husband and not worry one bit about her because I knew she was in such great, capable hands for that time that he was in the ICU.  Thank you Emmy, Dad, & Cindy for that.. and to my mom who was basically packing her bags to be on the next round if Eric had to stay in the hospital longer.

And thank you to Eric’s mom, Vicki, who came out to be with Eric and Isla so that I could get out or get things done!

We are so grateful for family!!

Love,

tess

2 Comments

  1. Jim & Gloria
    October 11, 2017 / 10:42 pm

    We’ve been thinking of you guys a lot. Our thought and prayers go out to you all. Give Eric a hug from us.

  2. Chris
    October 12, 2017 / 7:57 pm

    This was a wonderful post about real life. Thank you so much for the update and for your transparency! I know this could not have been easy to write, but I am so happy to hear that things are (slowly) improving…baby steps! I will continue to keep all 3 of you in my prayers and hope you can get some much-deserved rest!

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