Tuesday, October 13, 2015

A post I was hoping not to write for a while

Well it has been a doosey of a week. (Doosie? Doosy?) Last Thursday and Friday Jon was having a bit more trouble breathing than normal. He needed the big mask you see in this photo in order to feel comfortable, and even then it wasn't perfect.

Jon's last masked selfie! Taken this morning.
Normally he uses the nasal pillow you see in this photo. (My friend Debbie thinks this outfit makes his nose look big.) This hasn't been a bad deal. Not too intrusive and he could still talk and eat. 

Looking good in his fancy candy cane jammies.
Before his gallbladder (hear after referred to as that damn gallbladder) decided to go wonky in August, he looked like this. (Although slightly less dopey. This is a picture from the ER when he was getting his kidney stones taken care of.) So handsome!

Blissfully medicated while passing a kidney stone.
That damn gallbladder probably set Jon back at least 6 months. The progression of ALS is relatively constant...it does't really speed up or slow down. It is just relentless. However, when other trauma to the body happens, the ALS trajectory dives at the same time. Even though he is back to his previous progression, he just couldn't recover to where he was before that damn gallbladder went bad.

Which brings us to today. It turns out that Jon did indeed have pneumonia last week. He simply doesn't have the diaphragm strength to cough well and get gunk out of his lungs. So there it sat... in a nice, warm, moist (eeeewwww) environment just begging to get infected and become pneumonia. And even though they are clearing up the pneumonia, he still doesn't have the strength to clear his lungs.

So today Jon will be having a tracheostomy placed (a breathing tube in his throat for a ventilator). I'm not gonna lie... the last couple of days have been tough. Sunday I cried myself into a ridiculous headache. (Thank you, Becca, for the ibuprofen and chocolate...cleared it right up. As an aside, I find the best friendships are built on a solid foundation of chocolate.) 

But here we are. We knew this day was coming. Jon does have ALS, after all. And he made the decision months ago that a tracheostomy is the right choice for him (and I completely agree). We had hoped this wasn't going to happen for a long time, but we don't always get what we want. And that's OK.

While this is an emotional transition for us, I believe it will be a great physical change for Jon. He won't have to deal with all the stuff on his face, and we'll be able to suction the gunk out of his lungs. The downsides, of course, are that talking and eating will be difficult to impossible. But again, the ALS had already largely taken those things.

Our kids are thrilled. They're just excited for dad to look like Frankenstein. Just in time for Halloween!

9 comments:

  1. My hugs and love to you wonderfully strong people.. You are such a positive lesson for us all. I am here for you any way you need.

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  2. 'Damn gallbladder' indeed...(LOVE the use of that word btw very appropriate..Personally I would have gone stronger, but I am a liberal European !! ;) ) What an emotional time. So glad you have great friends there ready with chocolate and 'drugs'. We love you and you are always in our thoughts and prayers.

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  3. So strong and full of true joy inside and out

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  4. So strong and full of true joy inside and out

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  5. Thanks for sharing your story. It gives me the opportunity to think of you (Jon and family) and feel for you and pray for you as well as contemplate what is really important. You are a blessing to me. Love to you old friend and your family too.
    Aaron Sanns

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  6. All my love. Wish I was right by your side to keep you stashed of chocolate. I hate being this far away from you all. Damn travel expenses.

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  7. you are in my thoughts and prayers.

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  8. God Bless You, Anne. It is so hard to sit by and watch a loved one. Jon is so brave and I enjoy reading his story. He IS an amazing man and you are an amazing family. God Bless him too with his trial here on earth.

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