Wednesday, March 11, 2020

Jason's Hospital Journey

Hi there! Long time, no blog. I promise I have a good reason, stay tuned to find out!

Jason's hospital journey began on the day we were leaving Walt Disney World. It was a Tuesday and he woke up with a pins and needles feeling in his fingertips and toes. Jason thought he slept funny or something random, so he didn't mention it to me. (We realize now how big of a mistake that could have been, but in this situation it was ok.) After arriving home that day, we unpacked and attempted to return to the groove of things. It was that evening when Jason told me about his symptoms. I was concerned (of course) but didn't want to panic so I told him if it worsened, I would take him to the ER. Honestly, the fact that it was his bilateral hands and feet threw me for a loop. I'm an oncology nurse so that didn't ring "tumor" in my head and I just didn't know what to think. (Let's be honest here - because oncology is my specialty, every time one of my family members or myself have a symptom, the first thing going through in my mind is oncology symptoms!)

The next day was Wednesday and Jason said everything felt exactly the same. We were both so confused about what was going on and again, I told him if it worsened we would head to the ER.

Enter Thursday morning, the day everything changed. Jason woke up and was incredibly wobbly on his feet. I was still home, thankfully and hadn't yet left for work. He also said that the "pins and needles" feeling had increased to the palms of his hands and the soles of his feet. True to my word, we headed to the ER at the hospital where I work.

We spent a total of 11 hours in the ER between Jason being poked, scanned, and examined. He had blood work, CT scans, a lumbar puncture, and MRI's and after the ER provider spoke with the neurologist on call, they decided to admit Jason to the hospital for two nights at minimum. Their fear was that he might have a rapidly progressing syndrome called Guillain Barre. It's rare, they don't really know why it happens to some people and not to others, and it can cause respiratory paralysis. In short form, they basically told Jason that if GB is what he had, he was likely exposed to a virus somewhere and his body turned on itself and started attacking his peripheral nerves. Thankfully, his version of GB was caught super early and never progressed beyond his hands and feet.

Over the course of his hospital stay, he was blasted with crazy does of IV steroids. The neurologist on call did a full exam and told Jason he would be fine "in time". Because we were dealing with nerves, who knew how long "in time" would be. On Saturday of that same week, after two nights in the hospital, Jason was discharged home, still feeling the exact same way he was when he arrived and the providers were pretty much shaking their heads because all of his testing returned normal. His physical symptoms in his hands and feet were there as well as a lack of reflexes (super weird) and  difficulty walking up and down stairs (think spaghetti legs here).

We also didn't feel the need to just sit in the hospital when there wasn't anything anyone else could do. Instead, I began researching additional provider options. You see, the neurologist Jason saw in the hospital was very good, but it's near impossible to get an appointment at his office due to the crazy amount of patients he sees. I knew our next course of action needed to be an out of town neurologist, so I began to dig.

I believe that some things happen for a reason and I do believe our paths cross with others at certain times for a reason, too. So, as we were leaving the hospital on a Saturday, I randomly happened to bump into my physical therapist who was just returning to her car from a run. She shouldn't have been around work that day and neither should I but there we were. When I explained what was going on with Jason, she asked if I'd looked into the Neuromedical Center in Baton Rouge. At the time I had not, so that's where I began my focus. Around here, people tend to point to Houston for any and every medical problem and that's great for some things - but I just didn't have a peace about Houston. As a nurse, I know that following your gut feeling is important and Baton Rouge was where my gut feeling was leading me. Along this journey, I also had two additional confirmations about the Neuromedical Center in Baton Rouge, so I knew I had made the right call.

Once home from the hospital, I specifically asked on facebook for prayer for a quick appointment and you wouldn't believe how shocked I was when I called on Monday morning and was offered an appointment for Wednesday afternoon of the SAME week. During our appointment, I was discussing Jason's case with the neurologist and he asked why we traveled so far to see him. (It's literally 2 hour trip there.) When I explained about our situation with the home neurologist, the Baton Rouge one said "we're not much better here!" I told him I had literally called two days ago to make the appointment and his response was, "well, sometimes things just open up!" WOW.

By the way, the Neuromedical Center is HUGE. It's literally like the same size of the hospital I work in and they see neurology alone! Wow! 

After a lengthy discussion and evaluation from the Baton Rouge neurologist, Jason was diagnosed with something called AIDP (acute inflammatory demyelinating polyneuropathy) which is essentially Guillain Barre. Currently scheduled are appointments for a nerve conduction study as well as physical therapy with the PT who recommended the Neruomedical Center in the first place! He was also told that this will be a "wait and see" game, so that's what we are doing. Waiting, seeing, and praying!

Since all of this, the tingling/pins and needles feeling has changed and now Jason feels a tightness or pressure type feeling in both hands and both feet. Also, normal functioning and sensation has returned to three of his fingers, but he still has a bit of a ways to go. Nerve endings can be slow to regenerate and that’s the place we are in right now. 

Throughout all of this, our family, friends, and church family have been phenomenal. Jason had so many visitors while in the hospital, people offering to bring us food, flowers, even a deck of cards! Our church sent a bouquet of flowers that were purple and yellow for the LSU Tigers and after they were delivered, our children's pastor and his daughter (also our friends) arrived with a yellow LSU tiger balloon animal (complete with lumbar puncture wound on his back)! Funny thing is, they had no idea that what type of bouquet had just been delivered!

Even though we have walked through some deep waters with all of this, I have literally felt God's had on it all. We are believing for a full 100% recovery so life can return to normal around here.

What a way to return home from vacation, huh? Jason says we probably shouldn't vacation to Disney anymore...and I just think he's crazy! (He's joking, of course!)

If you guys could keep us in your prayers when you think about it, that would be wonderful! We appreciate all of the prayer that has gone up on Jason's behalf so far and we definitely feel the love. God bless!


  1. I'm glad you guys have a diagnosis for Jason but at the same time sad that he's - well, both of you - going through this. Sending all good thoughts for a full recovery!

  2. Hang in there. It’s a challenging journey but he will get better. Make sure and contact the GBS/CIDP Foundation for information. They also have my contact information in north Louisiana if me or my wife can help y’all.
    Thanks- Shane Sumlin GBS Survivor

  3. Oh definitely be praying for you and Jason and for a full recovery! Have they said what causes this?

  4. I hope Jason has a full recovery soon! Best wishes!


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