John using his special glasses that have a bluetooth mouse built in. He clicks and double clicks with his teeth!
John using his special glasses that have a Bluetooth mouse built in. He clicks and double clicks with his teeth!

It’s been a crazy couple of weeks.

First, John’s feeding tube pulled out partially and the fluids that were being put into it actually was going into his gut. They had to do some minor surgery to put in drainage. They also had to remove the tube until everything has a chance to heal. Meanwhile, he’s got a feeding tube in his nose which he does not like at all.

At the same time, they discovered that he had a urinary tract infection. He was really not feeling well and running a low grade fever.

Meanwhile, the kids were starting school in south Georgia. Griffin has never been in school before and Phoebe hasn’t been in since that short period during kindergarten. And of course the top off that week, after finishing the second day of school, my boy broke his wrist playing kickball in the front yard.

I spent a large part of the week with the kids but called the hospital (200 miles away) for daily updates. I finally returned to find John sticking to bed because of an upset tummy due to all the antibiotics.

I stayed a couple of days and then had to dash back to take the boy to get his arm casted and then I was forced to stay another 4 days because of a bad cold with fever and chills. I went to urgent care where I found out it was a sinus infection but I’m still not feeling very well.

This week, John had good lung volumes and weaning can finally begin. He was off the vent for just a few minutes on Monday – he started coughing and couldn’t catch his breath. Then for most of the days this past week, he managed to be off vent for two hours each day.

The plan is to work him up to 4 hours off vent and then work up to 8 hours off. Then they’ll let him plateau a bit and put him back on vent at night to let him fully rest until he’s ready to come off the vent completely.

Mechanical ventilation is required for about 30% of folks with Guillain-Barre syndrome and last for anywhere from a few days to many months. The risk now is John getting too tired and it’s a very very fine line between rehabilitation and recovery and relapse.

Physically, he’s begun to have some real movement in his left arm and a little bit in his right arm. Recovery tends to go in reverse of the loss, i.e. the last thing he lost (facial movements) is the first thing he got back and the first thing he lost (legs) will likely be the last thing to come back.

His speech therapist and I agree that’s he’s probably got about 80% of his facial movement back. He still can’t wrinkle his nose or raise his eyebrows but the rest of his face is pretty much back to normal. She plans to do a swallow test Tuesday to see just how effective his swallow is. This involves running a tiny camera through his nose and down to where we can see his vocal cords. Then she feeds him something like pudding or Jello and looks to see how much is actually going into his lungs versus his stomach.

I think his left arm is at about 30% and his right arm about 10%. He doesn’t have any real meaningful movement in his hands but he lost those before he lost the arm movement. He can slightly move his left thumb and can twitch his right thumb.

It sounds depressing probably but I am pleased as can be. I can SEE him coming back. And it’s not just wishful thinking. His therapists, who are constantly measuring and evaluating, are remarking about it too.

Most importantly, he is more himself. His sense of humor is coming back. He’s always had a very expressive face and that’s more and more visible.

All of them want him to be able to talk to us – the vent doesn’t allow speech at this point. They all want to know his thoughts, know who HE is. I truly have never seen folks who care about their patients and SHOW it than at Shepherd.

We hope to bring him home this fall. I’ve started a GoFundMe fund to start fundraising for a powerchair accessible van. I have had so many people ask how they could help and this is truly what we need the most help with right now. There will be doctors appointments and therapy and all kinds of things that we have to do when he gets home. My greatest wish is to give him the ability to see the world beyond hospitals and ambulances.

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