An unexpected visit to the ER

Last summer (2018) I left my work conference in Washington DC a day early – I took the greyhound home because it was the quickest I could get back.  Chris described his symptoms to me…he was crawling up the stairs, his legs were extremely painful – inexplicably painful that he could barely walk.  He had numbness and tingling spreading up his legs.  Chris went to urgent care where the doctor couldn’t really explain what was going on, but took several gallons of his blood to test for various things including Lymes Disease.  The doctor sent him home and told him if it started to spread up his body to immediately go to the Emergency Room.  I made it home and it was clear Chris was very ill, with what exactly we had no clue.  It was all very worrying.

The next day when Chris woke up the numbness and pain had started to spread to his hands and arms, so we sent Aviana off to daycare and headed to the nearest ER.  It was there that Chris was admitted into hospital for tests and observation.  The doctors were very concerned and he became that patient that would have had House M.D. appearing at his bed.  It was a mystery.  Each day they ruled out various diseases with tests and observations, new doctors and specialists appeared with their theories and hypotheses.

It was very difficult for me to leave Chris in hospital and go home to look after Aviana in the evenings. It was difficult for Aviana to understand why daddy couldn’t play with her.  The hospital is generally a terrifying place for a toddler, beeps, noises, wires, strange people etc aren’t overall very welcoming.  I had friends who helped to look after Aviana whist I visited Chris in hospital.  Of course this all happened when our regular sitter was out of town otherwise it would have been a whole lot easier to handle.  It made us realise how far away our family is in a time like this. Of course we were all worried.

Eventually Chris was discharged and told it was probably a virus and one of these things that happens. (Ummmm yeh, just one of those things???!)  When he became an outpatient Chris had some nerve tests done which confirmed he had nerve damage in his legs…and so was diagnosed with acute inflammatory demyelinating polyneuropathy, also known as Guillain Barre syndrome.  It is basically an autoimmune disorder where the body’s immune system mistakenly attack the outside of the nerves and damages the myelin insulation.  It is often triggered by an infection of some sort (he had some kind of stomach bug thing a few weeks before), but it can happen to anyone, anytime. They don’t know why it happens. Scary. Chris was told his recovery could take from 6 months to a year.  He was off work for several weeks, exhausted as he slowly gained his strength back.  He also suffered from a lot of ‘brain fog’ as well, so mentally he has had to build his strength back up before going back to work. There are still unknowns if this would ever come back again (chronic form), but so far, it’s looking promising.

Chris was lucky that this did not spread further to their parts of his body and that the damage did not require him to need physiotherapy nor need much longer hospitalization.

So that’s where I was and where I went to.  It was a crazy summer and I decided to take some time off blogging to focus on my family.  Then I got busy with learning how to sew and knitting blankets for local families who lose their babies (that’s another story for later).

I miss blogging but I have also been thinking very carefully about this blog and what I write about here.  At the forefront of my mind has been Aviana’s privacy, especially after reading an article about a kid asking her mother to stop blogging about her and her mother refusing to.  I don’t want to be that kind of parent, but at the same time I want to share my experiences as a parent. So I will return to this blog!

(Ps. the post I posted the other day was SOOOOO old and incomplete, sorry about that- I have a lot of draft posts I have yet to finish!  My goal is to finish them within the month!)

Goodbye 2018, you have been full of highs and lows.  Hello 2019 – what will you bring us this year??

Happy New Year Everyone!!!!

15 thoughts on “An unexpected visit to the ER

  1. Amy M. says:

    I’m so sorry you guys went through that. Years ago, my now ex was diagnosed with Guillain Barre syndrome. His was a bit scarrier… he said one morning he was having trouble breathing, and his inhaler wasn’t helping. I thought he was being dramatic (as he was often) but he begged me to call 911. He deteriorated fast, and when we got to the hospital they put him in a medically induced coma to get his body under control and do testing. Unfortunately he has the chronic kind, and is on disability for life. I really hope Chris (ironically, my ex’s name as well!) Makes a full recovery and never has to deal with this again!

    Liked by 1 person

    • Dani says:

      Oh wow that must have been terrifying. It’s sudden onset from nowhere is very scary. Chris really was lucky it wasn’t worse than it was-its horrible. Chris is extremely worried about getting it again 😢 it’s very rare to have the chronic type so we think by now it’s unlikely he’ll get it again (fingers crossed!)


      • Amy M. says:

        Yeah hopefully not! My ex was in a coma I think s little over a week, then he was finally diagnosed and woken up for treatment. Transferred to a better hospital, there for over a month, and then had outpatient treatment and therapy for months. It’s definitely a scary disease! Fingers crossed that once he’s better, you’ll never have to deal with it again!


    • Dani says:

      Thank you! Yes…it’s been a while 😳 I’m keeping up with instagram more (and I’m following you ☺️) because it’s easy but I miss blogs because there is more intellectual discussions than IG!!!

      Liked by 1 person

  2. Nara says:

    Oh Dani!!!! That’s so scary! I am glad you were able to take the time to focus on your family. I hope Chris makes a full recovery. That must have been so stressful.

    I agree with you about blogging… That’s why my blog is sort of vague about a lot of personal details and I try not to post identifying information. I’m the same with fb – I don’t share photos of B with my entire friend group; just a subset. And I’m thinking of culling my friends list. Not to be petty but just more conscious of what is out there. You just have to do what works for you.

    Hope 2019 is kind to you. 💕

    Liked by 1 person

    • Dani says:

      Thank you! We survived- just about, I can’t imagine what would have happened if it had been worse for Chris, we count ourselves v lucky!

      I’ll have to share some pics of A with you because I use 23Snaps instead of fbook for same reason as you! I don’t trust Facebook or myself to get the settings right to limit them! It’s such a terrible thing we have to think like this though 😔

      Liked by 1 person

      • Nara says:

        Aww yes, that would be lovely! I am so glad you are okay, but it sounds so scary. I don’t know how you cope! I still remember the bombing!


  3. ourgreatestdesire says:

    Chris is the 3rd person I’ve heard of being diagnosed with this in the last year or so. One of J’s good friends from HS got diagnosed with it last year or the year before but she looked and was feeling much better when we saw her at his hs reunion in October. I had a friend from CT that was also in the hospital this summer with it. Praying he makes a full recovery and it does not end up being chronic.


  4. RJ says:

    Oh man Gillian barre is so scary. I’m so glad he’s not affected too badly. Make sure to verify his ability to get the flu shot in the future (or any other vaccines). Sometimes there are contraindications to getting vaccines with a history of GB. Good luck to him and a speedy recovery!


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