Another day...

For the first time since I started this blog, I'm not even sure where to start or what to say.  I'm exhausted.  Saturday Jeremiah spent nearly the entire day in his broken recliner.  Didn't even want to eat.  That evening I sat with him to really observe and check up.  He said he just wanted "to listen to the game, not watch" and he couldn't feel either arm.  I poked and pinched and he had no response. I asked him to make fists with each hand, and he only accomplished a sort of fist about 25% of the time.

Around 3 AM Saturday night/Sunday Morning, he used the wheelchair to get into the bathroom. When he came back from that I could tell something was wrong. He wouldn't stop moving all over the bed, even almost falling out. He was moaning in pain and there was clearly a lot of pain in his trembling voice. He managed to tell me that his neck and shoulder hurt.  I assumed he must have slept on it wrong and tried to find a knot.  He screamed out in pain as he wasn't even able to tolerate the slightest pressure.

He said he wanted to go sit in the chair, thinking sitting upright might provide some relief. about 2 1/2 hours later (around 630 AM by now) he came back into the bedroom and said he was not able to sleep at all and couldn't take it anymore, he needed sleep. He transferred to the bed where he immediately started crying out in pain.  He asked to go to the ER as the pain had spread down his chest and rib cage and it hurt to take a deep breath. I called his mom to come to get the kids and we went right over.

We got to the ER a little before 9 AM Sunday. And we would spend the next nearly 10 1/2 hours there.  They did a bunch of tests, as usual, we waited for neuro for about 6 hours.  And then again another for pharmacy as they sent his scripts to Florida.  Must be a subliminal message.

At any rate, they finally decided that the pain he is having is similar to what other's call "the MS hug" and it can be very painful.  They said he has two new and very active lesions on his C3 and C4 and that is what is causing the pain.  They told him very bluntly they do not want him on narcotics for the pain, and he would be in pain after the ER. But they don't want to mess with narcotics on top of everything else.  It's like putting a band-aid on something that needs to be fixed, not covered up. 

So he came home with a ten-day course of gabapentin and another course of steroids - this time an oral version.  He goes back in tomorrow for occupational and speech therapy.  He will go ahead with the second dose of the Ocrevus and we will touch base with his neuro team at some point this week as well to see if there is more to be done or changes to be made.  

The older two kids asked me today if dad is going to die from MS soon.  I still don't know how to answer that.. You'd think after having the same children ask me if I was going to die from cancer when they were 2 and 5 would have me better prepared for this. But it didn't.  

I also want to say a heartfelt thank you to everyone who has prayed, sent cards, shared our journey and anything else in between.  The big gestures and the small events, they are all appreciated and we are grateful.  I also want to encourage everyone to continue to pray, but to also find a small random act of kindness to give to a stranger.  You don't know how much of a difference your compliment or your buying their lunch could make.  And think of the domino effect you could be starting. 

A special thank you to those who have been supporting my business.  I can and am working by the besides these days! And it feels good doing both! Thanks again, friends! ❤